Tom's Blog

Hi all,
I dont post very often but browse your posts with interest.
Just thought Id mention that recently I have had a nasty flare up of PA
in my nose joint. I have never heard of this or experienced it before.
It was extremely painful and swollen for four days.
My remedy ...ice packs and increase dose of Mobic 7.5 to 15mg for two days and
it settled.
Has anyone else ever had PA of their nose.....just interested ?
Dianne.
Canberra.Australia.
[Editor's Note: This is a new one on me. I didn't know the nose even had a
joint. I have certainly heard of severe flares of Psoriasis in the nose which I
understand is very painful and also creates a lot of swelling, but I am keen to
learn something new. Kathy F.]

Melissa,
Kathy F. is right. I am currently on Remicade and UHC and I do not
pay that kind of co-pay. It may vary from state to state and with
your company, but that sounds way high. I get my infusions every 6
weeks. UHC is billed $14,000.00 per infusion by the Dr., but the
negotiated amount is $5400.00.
I did talk to Centocor and they do have assistance available.
Fortunately I didn't have to use it - but it is there.
Good luck! Remicade has been a god-send for me!
Marion

Hello all,
Well I got a call from my rheumy's office and apparently the good news is my
remicaid has been approved by UHC, however the bad news is I supposedly have
a 100.00 deductible and then a 10% co-insurance for each treatment which
equals roughly 600.00 per infusion every 4-6 weeks (sometimes I got to have
mine closer together) The nurse is going to go over it with the lady who
does the billing, and have her call me and make sure what she read was
correct...I am so furious. There is no way I can afford that... no way. So
I guess its back to raptiva and PRAY it affects my bones as well as it does
my skin. They will pay 100% for my raptiva.... I dont get it... I truly
dont get it.
Melissa
[Editor's Note: Melissa, I don't think the numbers can possibly be right. For
it to be correct, Remicade would have to cost $60,000 p.a. but I believe the
actual cost is closer to $25,000. A deductible is usually an annual hurdle and
once you've met that, it doesn't have to be paid each time. My understanding is
that Remicade would cost about $2500 per sesssion for, say, a 154 pound person),
so 10% of that would be $250. Although $250 is STILL very expensive, it is a
lot less than $600. Centocor has a patient assistance program to help provide
discounted medications to people who qualify, based on income levels and other
factors. More information about this program can be obtained by calling
866.489.5957.
I hope they get to the bottom of this and that the final cost is within your
reach. Kathy F.]

How long - on average - does it take for Enbrel to kick in? I've had
two doses and figured it might take time for it to start working.
Just wondering how fast it worked for others....
Patty
[Editor's Note: It varies from person to person, but it is not unusual for it to
take 2 - 3 months before it will really start to take hold. Two doses is not
enough to indicate one way or the other if it will work for you. Kathy F.]

Hi everyone,I haven't in awhile. For all of you that are not familiar or haven't
heard of me my name is Goldie, I live in Alberta Canada and I am a 23 year old
female.
I've been diagnosed with PA since late 2004 but have had P since birth. Taking
Celebrex and Sulfasalazine since diagnosed. ( discontinued now)
I was just wondering if anyone has heard of "Buergers Disease" being
associatedor caused by PA.The doctors tell me its a smokers disease but also
commonly associated with P and PA. I personally have never heard of it.
I wrote back in Sept or Oct I think about ulcerations I developed on my left big
toe. It was until Dec that my GP sent me somewhere for a second opinion after
numerous antibiotics .
I eventually was sent to a vascular surgeon and after numerous tests it was
proven that I had 2 major blockages in both legs from the knee down.
They tried doing bypass surgery on my left leg 3 weeks ago but unfortunately it
was unsucessful; so I have to get my left leg amputated below the knee.
I had surgey on my right leg last Monday and that was thankfully sucessful; they
were able to save that one.
Sorry for rambling but I really would like to know if anyone has heard of this
disease being associated with PA.
God Bless,
Goldie

Hi and Welcome to you, Peggy & All our new members,
I'm looking forward to getting to know you all and giving support as
needed.
Peggy,
I am sorry to hear about your brother's death. 46 is too young but
then again any age is too young to say good bye to our loved ones.
I can relate to your trouble with the Drs. not believing you since
they look for "sauage fingers". I have this trouble. My RD has never
asked me my true ring size. If he would, he'd find out that my finger
size is 5 not the size of my wedding ring--size 7. On the rare
occations that the swelling leaves my hands, my weddng ring actually
falls off my finger. I have very little noticable swelling in my hands
but I know it's there.And I feel the pain and stiffness too. For a
year my DR. was passing it off as Osteoarthritis. Truly frustrating to
me! Now he is wondering. Why? I had to go off all meds. for 7 months
to "prove" it is more than Fibro or Osteoarthritis. My first
diagnosing was when I was 12 then it was dismissed since I went into a
remission then showed little signs of the disease. Maybe one day the
Drs. will actually listen to us...
It is nice to meet all of you new members. I hope we can learn
together what this disease does to us, and tips on coping with it.
Welcoming Hugs,
KarenCorie

I am so upset I had to change insurance. I had to get my meds pre
approved now a week and half to get someone to give me an answer
approved or not. Well still getting the brush off and now I have
missed a dose of humira. I am also in the middle of a flare I was on
predisone and it did not even stop just some relief. Like I told the
the insurance company that yes this is medically necessary there
answer was well they are awful expensive. AHAHAH!!! What does that
have to do with my health. I have enough of a problem getting covered
because of the PA. This is so infuriating. I even have humira
involved. I just needed to vent.
Sandra

Wow, Peggy,
You've really had a run of it haven't you. I am glad you found this
place. After you have been here awhile, perhaps you can write a play
that encompasses the personalities you will find in this group. I have
found that we are quite a diverse bunch that is held together by this
incredibly powerful (sometimes overwhelming) and complicated disease.
I look forward to your postings: with your writing skills, you may help
us define ourselves more clearly. Wallowing in self pity seems not to
be your style, that is good. Peace be with you. Brent

Hi Kathy,
It may be something called Costochondritis, it is the inflammation of
the cartilage where the ribs attach to the breastbone. I have had
this and it hurts awfully just to breath and sneezing makes you
almost pass out with the pain. Nothing showed on my x-rays and it
lasted for a few months. I now know what it was and that it can be
related to inflammatory diseases. If you do a search within this
group you will find quite a few of us have had this. I am pretty
sure I got the spelling right so if you google it you will also find
a heap of info.
Hope you get some relief soon.
Janice

Yes I have heard of it. Before we knew what I had, I also was taken to
emerg as I couldn't breathe and when I did, it hurt. Same thing. When I am
not on my Prednisone, I can get this back at any time. Is your voice
hoarse? I also have this, as the inflammation is also on my vocal cords.
Heather
Ontario

In a message dated 20/12/2006 16:35:53 GMT Standard Time,
itchy_itch69@... writes:
Hi Everyone, I am so happy at the moment and just had to share with
you all my good news. I don't know what I have done to be so lucky
lately, but my guardian angel created a miracle.
Hi Janice,
That's great that you managed to get a diagnosis and can now see in what
direction to go. I hope things improve for your sister in time. Hopefully she
will
eventually be able to accept her condition...............but not accept it so
much that it takes over.
Just reading on through your subsequent posts. (I'm still way behind! lol)
Don't ever think that it is a problem for you.......................or anyone
else..........................Are you all
listening?......................Especially you newbies. lol........... to come
on and vent when you need to. I
feel that a major function of this group is to make sure anyone just joining
gets to vent as much and as long as they want. Watch how often someone sends out
their intro post and they sound like they are in utter despair but just
joining and being in touch with others who can identify with what they are going
through pulls them up out of it. Weeks later they can sound positively chirpy!
lol That is why I try to answer any intro posts just to make sure they know
that someone is acknowledging them. Trouble is I am usually so far behind
nowadays that by the time I answer they probably think I'
M new! lol So, I hope if someone wants to contact us to tell us how good or
bad they are feeling at any particular time, they don't hesitate to do so.
Reading on, You said:
I am glad that it
showed the inflammation absolutely everywhere in black & white
though, so I know it is not in my head and have some proof to show if
i ever need it.
Well, I'm glad that you don't have inflammation in your head. Then we would
have had to call you 'Big Head' lol
Just read about you having to stop the MTX. I'm sorry about that. I hope the
Sulph works well for you.
Best of luck to both you and your sister.
Take care,
Martin

In a message dated 13/12/2006 16:14:19 GMT Standard Time,
cecepage75@... writes:
my husband has been diagnose with PA 6 months ago, after 2 years of
wasted time between doctors that did not have a clue or did not want to
make THE decision.
Hi Cecile,
A very late welcome to the group. I hope you have taken Kathy's advice by now
and already seen a Rheumatologist.
I'm glad you found us but sorry that your husbands condition means that you
had to. He is a lucky man to have you behind him trying to help. I hope he can
get on to the meds that will hopefully help him.
Take care,
Martin

In a message dated 12/12/2006 01:10:36 GMT Standard Time, tpiret@...
writes:
Hi all,
I am searching for a support group to join over the internet. I
don't get out much with my PA and Spondylitis. I just celebrated my
38th birthday and feel like i'm 138. LOL
Hope all of you are doing ok today.
[Editor's Note: Tpiret, at 138, that makes you one of our older members.
Kathy F.]
Hi Tpiret,
Yes, Kathy is right. Most of us only feel as if we are in our nineties lol
Search no more, you have found us. A late welcome to the group. Hope to hear
more from you.
Take care,
Martin

In a message dated 1/31/2007 4:23:01 A.M. Pacific Standard Time,
dmccr1000@... writes:
Our poster may have been for profit and on the shady side, but there is a
reasonable
amount of data from basic studies and peoples own experiences to suggest
that some of
us might benefit from a change in diet and the regular consumption of some
anti-
oxidants.
Hi there...I am always looking for all options...medications and
otherwise...and read a lot to keep myself informed. Last year a pretty good
book came
out written by a phd in nutritional medicine/pharmacology I think, the book is
called Inflammation Nation. It was written not as an arthritis or
autoimmune diet but as a diet to reduce overall inflammation.
It seemed like there was good science behind the book...and it explained
which foods help reduce inflammation, how they do it, and why. It doesn't tell
you much that you don't already know (cold water fatty fish helps a lot) but
it does get at the science behind why and gives a good overview of helpful
foods (in case you get tired of eating salmon). It also specifies beneficial
vs. not helpful salmon (wild, living in cold waters vs. farmed), etc, to help
you make wiser choices.
My theory is, while alone it doesn't do enough to alleviate my symptoms, it
can't hurt (and certainly there is proof it could help my heart).
Anecdotally, there are a few of us on the board who do better with less
wheat/gluten in our diets. There is some partially substantiated web
information
if you go searching under paleolithic diet + autoimmune. There is also some
common sense info here...the basic premise is that 500 generations ago, our
ancestors weren't farming and therefore weren't eating a lot of grains and
dairy, they were eating a lot of vegetables, legumes, seeds, and shellfish,
with the occasional bit of meat. Our modern diets are heavy in grains and
dairy, and 500 generations is not that long in evolutionary times, so our bodies
are not as adept at processing our modern diet. Not to mention all of the
processed foods we eat...
In conjunction with the gluten issue is the fact that celiac disease (gluten
intolerance) is heavily under-diagnosed in this country compared to Europe.
Given that many of us are of European ancestry, it is likely that we have
more celiac here that is attributed to chronic fatigue, irritable bowel, etc.
Celiac is an autoimmune disease, and as some of us know, we are pre-disposed.
So it's never a bad idea to ask for the initial screen, which is a search
for gliadin antibodies via blood test.
Sadly, I make my living these days by drinking a lot of caffeinated dairy,
and I love to bake, so I don't practice what I've learned on a regular basis
(remicade and its relief have made me less diligent about healthy habits), but
during a flare, if I cut out the dairy and gluten I do a bit better.
Hope that helps...
Rachel

I recently reduced my prednisone to 20 mg per day (it was ranging from
60 to 80 mg per day). Anyway, I started feeling really bad and then it
began to hurt to breathe (like I couldn't take a deep breathe).
Eventually I went to the ER where they ran all the tests (chest x-rays,
blood test, ekg.) and the dr couldn't find anything but suggested that
I was suffering from inflammation in my chest wall due to the PA. Has
anyone ever heard of this?

Hi everyone,I haven't in awhile. For all of you that are not familiar or haven't
heard of me my name is Goldie, I live in Alberta Canada and I am a 23 year old
female.
I've been diagnosed with PA since late 2004 but have had P since birth. Taking
Celebrex and Sulfasalazine since diagnosed. ( discontinued now)
I was just wondering if anyone has heard of "Buergers Disease" being
associatedor caused by PA.The doctors tell me its a smokers disease but also
commonly associated with P and PA. I personally have never heard of it.
I wrote back in Sept or Oct I think about ulcerations I developed on my left big
toe. It was until Dec that my GP sent me somewhere for a second opinion after
numerous antibiotics .
I eventually was sent to a vascular surgeon and after numerous tests it was
proven that I had 2 major blockages in both legs from the knee down.
They tried doing bypass surgery on my left leg 3 weeks ago but unfortunately it
was unsucessful; so I have to get my left leg amputated below the knee.
I had surgey on my right leg last Monday and that was thankfully sucessful; they
were able to save that one.
Sorry for rambling but I really would like to know if anyone has heard of this
disease being associated with PA.
God Bless,
Goldie
[Editor's Note: Goldie, I know I speak for everyone here when I say that I am
very sorry to hear that one of your legs has to be amputated. I won't in any
way pretend to know how you feel but I know that it can't be easy being you
right now. Our prayers and best wishes are with you. Unfortunately, those of
us with P and PA are very prone to severe problems with our extremities due to
severe inflammation (fingers and toes) and nail deformities. This can create
blood clots in the feet and hands that, if serious enough, can become Buerger's
disease. My understanding is that Buerger's disease is most often found in male
smokers (you are neither) and, more rarely, in people suffering from autoimmune
diseases. That, of course, includes P and PA so unfortunately in rare cases
people with our disease can develop Buerger's disease. So, while it is
extremely rare, there is a link in some people between Buerger's and autoimmune
diseases. Please feel free to come here at any time if there is anything we can
do to help. I worked with someone who lost his leg in an auto accident and I
can tell you that Joe has been able to live a full and happy life and he was
even able to resume sports after about 18 months of significant PT and a
well-fitted prosthesis. Kathy F.]

Hi Rachel,
Why 8 years!!!
You didn't give us much info but...
Here is a little direction that might make your visit more productive
You should ask yourself some questions? not the Rheumy.
Why are seeing the Rheumy now?
Is your condition, better than, worse than or the same as last visit?
What is your daily pain level?
If you are taking any meds, are they working?
If not, do you want to try meds to treat your PA?
What have you tried already?
What do you hope to accomplish by the appt?
I hope this helps.
Stay Well,
David

Janice - so sorry to hear about the bummer report! I'm surprised you
have to wait so long between rheumy appointments, also. I went every 4
weeks (not months!) the first 6 months and now am at every 6 weeks. Is
it because of a shortage of rheumatologists there, or what?
I hope the meds will work for you. Be sure to report any side effects
right away, since there is a family history of sulfa allergy. My
daughter and I are both allergic to sulfa also. For both of us, it
showed up as hives.
I wish you better times very soon,
sherry z

Hi Everyone,
I had my second Rhuemy visit this week and got the results of my bone
scan. Was a bit of a shock I must say. I certainly didn't expect to
have so much degeneration already. I only started my first major
flare in October. Prior to this I often had aches and pains but
usually localised to one area and always put it down to ageing, not
exercising enough, bad sleeping position etc etc. I am hoping that
my degeneration must have started long ago as surely you can't get
that damaged in a few months can you?
Both shoulders, both elbows, both wrists, most of my finger joints,
both hips, both knees, both ankles and several toes. Also my lower
back and a couple of discs. Far out, this was a shock!! I have never
had pain in my hips so that really surprised me. I am glad that it
showed the inflammation absolutely everywhere in black & white
though, so I know it is not in my head and have some proof to show if
i ever need it. Now I know why I am in so much pain anyway. I was
in too much shock to ask the Rhuemy most of the questions that I
wanted to ask, so will have to wait until the next one in four
months. I wanted to know which of the 5 forms I have but I am
presuming that I have got the sudden onset everywhere one, great!
I have been off MTX for 2 weeks now and am so upset that my psoriasis
has come back with a vengence. It was really clearing up and I kept
showing everyone my beautiful hands (to me they were anyway - LOL)
Now they are worse than ever, horrible acne on the top and water
blisters and ugly yellow blisters covering my palms and fingers. Back
to hiding my hands and wearing gloves. In the short 4 weeks that I
was taking a small dose of MTX it had also managed to reduce my
inflammation levels to a normal range which impressed the Rhuemy.
Unfortunately I did have an allergic reaction to it and the Rhuemy
will not let me take it anymore. I was that desperate I said that I
didn't care and would just put up with it, but she said no way and
rattled off something about my lungs and severe damage. Oh well,
thems the breaks. (Thanks Cathy from ma for enlightening me here or
I could have ended up in hospital)
She has started me on Sulfasalzine and I am into my third night with
it. I have had a horrible headache since I woke up the first morning
with it. I don't get normal headaches much and this one is a bit
different to normal, my head feels so full and heavy and my teeth are
aching. I haven't had any other side affects yet (no nausea - yey!)
and hope this will go away over time, just a yucky taste in my mouth
and my coke zero & chocolate treats just ain't the same. (thats
probably a good thing) It is making it hard to work though etc, and
I have been taking heaps of pain meds to get through the day which I
suppose isn't good but I am hoping it is all just temporary. I had to
take 3 panadeine fortes today to get moving at work - had to it was
pay day - important stuff money. Is 3 too many? I didn't get any
effect from them other than dulling the pains. And no actually the
other side effect I am having is extreme pain in one of my arms,
mainly the elbow, but all the muscles too. I am presuming this is
because the drug is doing its thing and attacking my inflammation, so
it makes me feel like it is doing some good. I was nervous about
taking this one as both my mum and sister are allergic to sulpha.
But so far so good and I sincerely hope I get some relief and it can
slow down this damage that is going on.
I remembered to ask about Enbrel etc, but as I thought there are alot
of requirements here in Oz to be able to go on it. Sounds like I
might be lucky enough to get on in by the time i am doubled over and
in a wheel chair. Just really have to learn to be patient but it is
scary how quickly things can happen. It wasn't that long ago that I
was normal. I wanted a referral to a pain clinic, but will ask my GP
when I see her next about this. I can't believe the new normal for
me and sometimes don't think that this is really happening to me.
One funny thing the bone scan showed up is that I broke a rib a few
years ago when I lifted my daughter onto my shoulders at a concert.
I thought it was broken and so did my Dr but the x-rays at the time
showed nothing! I have also had a couple of breaks in my little
fingers that I don't remember. The Rhuemy said that a rib shouldn't
break so easily and told me that I should have a bone density test
for osteoporosis, but she didn't organise it, so will have to ask my
normal GP for that too. I already have a long list for her and I
will feel bad as I am starting to feel like a hypocondriac. I am
only 37, isn't that too young for osteo?? Her copy of the bone scan
results also stated something about osteoarthritis and wear and
tear. I said to the Rhuemy no way I am too young for that. she said
that the person writing the report doesn't see the person so they
don't know. This has confused me a bit, is she saying I also have
osteoarthritis or not? Will have to ask next time I see her. I am
to have blood tests every 2 weeks. This seems quite frequent
compared to others on here. I wish I wasn't such a sook with
needles. I get very faint and dizzy but it passes. will be an old
hat at it soon I suppose.
I wish I could say things in fewer words....but that's me.
Take care everyone
Hugs
Janice

Monday I posted because I have a boil in my armpit and
was confused about which doctor to see....
Several of you posted recommending a call to the
rheumy as a first step.
Wonder of wonders - not only did I get an immediate
answer (come in and I'll check it out) I got an
immediate slot (during my lunch hour) and the visit
took 3 minutes (took longer to write the co-pay check
and take my shirt off!) it is (as I suspected) a
minor infection. Dr gave me a script for broad
spectrum antibiotics. He told me that calling him was
the RIGHT thing to do.
I hate calling on ANYONE over what I consider 'small
stuff', but I felt reassured that he did want to be
involved in such minor issues. Even if I did
inturrupt lunch for Nurse and Dr....
Of course he sent the 'script to the wrong pharmacy,
but that is a minor annoyance!!!
Whew. I feel very lucky to have found such a pearl
among rheumys....
What is new in my life: a new furry child! I have
custody of a 11 month old yorkie to keep company with
my ten year old poodle. Their antics keep me smiling.
Question for the list: I am taking Humira every two
weeks - on Mondays. I have noticed that the four days
before my shot are like a mini-flare. Aches and brain
fog and fatigue - bad enough that I resort to taking
pain pills during that four day period. Have any of
you experienced that?
and, FYI, I think Humira is a miracle drug for
brain-fog and fatigue. I am back to my normal levels
of energy and concentration after a slug-like summer.
And this didn't take months to happen. It happened
within 24 hours of the first shot!!! It's improvement
and I'll take it!!
(See Kathy,it is possible to create a post with
nothing negative!! VBG!!)
CMPete
Quilts With Poodle
'.....now times are rough and I've got too much STUFF!!'
J.D. Buffett
I have a blog now!! And there is ACTUALLY stuff on it!
http://cmpetequiltspoodle.blogspot.com/
[Editor's Note: Phew, thank goodness, LOL! Taking things in the order of
priority: Congratulations on the newest addition to your family! May you, the
poodle and the yorkie have many wonderful years together. Second, it must be
very reinforcing to know that you have such a responsive rheumy. He sounds like
a keeper and I'm glad the infection turned out to be minor. Third, when I was
on Humira, I often started to hurt by the end of the second week. Your rheumy
might be able to switch you over to a weekly 20mg injection instead of 40mg
every other week. I ultimately switched to Enbrel which is usually given
weekly, but I am taking a smaller dose twice a week instead of the larger dose
once a week and for me this smoothes out the gaps. You might want to write this
down on your "things to discuss on my next rheumy visit" list. Kathy F.]

I just wanted to say a big thank you for all your responses and support...I went
back and got a chest xray...No pneumonia...but lots of inflammation and was put
on steroid dose pack..I feel so blessed to be in this group with so much support
and knowledge that abounds in here!! I pray for you all everyday..Thank you!
God Bless,
Vickey
tamilulu2 <tamilulu@...

PA suffers I have read a few of the posts on the contribuitor who was trying to
push some
kind of supplements as a treatment for PA. I am a Professor at a major medical
school and
have a basic understanding of what is known about what goes wrong in the joints
of
people like myself who have PA.
I have not read all the posts, yet is seems like information that indicates that
oxidative
stress leads to a proinflammatory response, while vaild, was being oversold as
the cause
of PA.
It is not likely that oxidative stress is the cause of PA, yet there is a large
body of data that
indiciates that systemic inflammatory resposes involve cytokines (TNF-a) and
oxidative
stress. Pro-inflammatory cytokines and oxidative stress trigger common signal
transduction pathways that lead to amplification of the inflammatory cascade.
Furthermore, pro-inflammatory cytokines, particularly TNF-alpha, and oxidative
stress
promote each other generating a vicious circle that leads to the death of cells
involved in
joint homeostasis and bone morphogenesis. It is also clear that cross-talk that
arises
between pro-inflammatory cytokines and oxidative stress greatly contributes to
amplification of the uncontrolled inflammatory cascade.
Current treatments for PA like Remicade, Humira and Enbrel target the
proinflammatory
cytokine TNF-a and aim to reduce its levels in the synovium.
Drugs like methotrexate actually inhibit growth of cells that grow in response
to the
excess TNF-a in the synovium.
My body seems to respond to TNF blockade, but I can't seem to get enough Enbrel
in it to
wipe out the effects of the inflammatory fire that burns in my joints. In
addition,
methotrexate makes me have dramatic mood swings, so I can't take it. Therefore,
inspite
of all the high tech drugs we have, my body is breaking down at a fairly fast
rate.
Therefore, to help the Enbrel, or soon to be Remicade do its job, I have just
started to
consume a few foods and supplements that are purported to act as sinks for
oxygen free
radicals.
This very well maybe a waste of time, but there are numerous recent posts on
this site
from folks who claim diets that contain anti-oxidants favorably impact their
disease state.
In addition, the NIH is actually funding a clinical trial to determine the
effects of a so called
anit-inflammatory diet on folks health.
Our poster may have been for profit and on the shady side, but there is a
reasonable
amount of data from basic studies and peoples own experiences to suggest that
some of
us might benefit from a change in diet and the regular consumption of some anti-
oxidants.

Karen, I would urge you if you can afford to see the heart dr. or your rheumy or
gp might could order an mri..To see what is going on internally..This could be a
number of things that might be minor or really major...Please get checked and
let us know what you find out.
Vickey
KC <ladyspeed@...
Does anyone know how true the inflammation of the aorta is? I was told
that
this is found in 15% of patients. Why I am asking is that I have been having
a tightening sensation that starts near the spleen area and runs up past my
shoulder in to my neck. This has been happening on and off through out the
years but just recently has become worse. Has anyone ever experienced this?
Could it be muscles only? My Dr. said she doesn't know what it is--without
running any form of tests. My mother is urging me to see a heart specialist.
Think this is right? Thanks for any opinion and/or experience related.
Kathy F. hang in there. I think you are doing a great job taking care of
this group and it's members. Opinion is just that an opinion. Thank you for
all your hard work here.
Hugs,
KarenCorie
--
SPEEDY :-)
Meds:
MTX 15 mg; Prednisone 5mg; Leucovorin 5 mg; Armour Thyroid 60 mg
Supporters:
MSM; DHEA 25 mg; Omega3 fish oil 8 daily; Vit. C; Vit. D; B-Complex; Vit
B-12;
Lithium Ortate; Osteo Comlex; Glucosamine & Chondroitin; and Essential
Minerals, AND CALCIUM 1500 mg
"Love endures all things."
great MSN animations:
http://groups.msn.com/TheAbyssOfAnimation/

This is my first experience with this or any group, but I do have a
question. I was diagnosed with PA 3 years ago. I thought it was a
nail fungus gone wild, but then the ring finger on my left hand became
extremely swollen and is now bent inward and spread to other fingers,
toes, ankle...the ususal from your postings. What seems to be
different is that I have absolutely no evidence P anywhere, except
under my nails. Will the skin problems follow?
Thanks for sharing your insight and experience.
[Editor's Note: Ginny, I was misdiagnosed for a number of years because I had
no P symptoms anywhere. Eventually, I developed a nail fungus under one finger
and that corresponded with a huge arthritic flare. My PCP treated me with
antibiotics. A few months later, the fungus had cleared, but my nails developed
ridges and waves and it was at this time that I also had an appointment with my
rheumy. He took one look at my fingernails and changed the diagnosis to PA.
Eventually, I developed P on my elbows and occasionally on my face, private area
and elsewhere. So, in my case, the P has spread, however, since I have been on
DMARDs (MTX, Arava, Humira, Enbrel - LOL, not all at the same time), the P has
not spread. P usually precedes PA, however, there are a number of us for whom
the converse was true and, yes, P can spread to other places. Kathy F.]

Does anyone know how true the inflammation of the aorta is? I was told that
this is found in 15% of patients. Why I am asking is that I have been having
a tightening sensation that starts near the spleen area and runs up past my
shoulder in to my neck. This has been happening on and off through out the
years but just recently has become worse. Has anyone ever experienced this?
Could it be muscles only? My Dr. said she doesn't know what it is--without
running any form of tests. My mother is urging me to see a heart specialist.
Think this is right? Thanks for any opinion and/or experience related.
Kathy F. hang in there. I think you are doing a great job taking care of
this group and it's members. Opinion is just that an opinion. Thank you for
all your hard work here.
Hugs,
KarenCorie
--
SPEEDY :-)
Meds:
MTX 15 mg; Prednisone 5mg; Leucovorin 5 mg; Armour Thyroid 60 mg
Supporters:
MSM; DHEA 25 mg; Omega3 fish oil 8 daily; Vit. C; Vit. D; B-Complex; Vit
B-12;
Lithium Ortate; Osteo Comlex; Glucosamine & Chondroitin; and Essential
Minerals, AND CALCIUM 1500 mg
"Love endures all things."
great MSN animations:
http://groups.msn.com/TheAbyssOfAnimation/

Thank you, Kathy F., for your handling of the "negative comments"
correspondence.
I, like a number of your other correspondents, am new to the group,
and seem to have come in on a spate of controversy. Like you say,
though, it is as well that we have this induction of fire so that we
know what a big bad world it is out there ... although most PA
sufferers are already well acquainted with the host of often well-
meaning woo-woo merchants who have an instant and surefire cure or
remedy.
We are also pretty good at finding things out for ourselves (through
experience, doctors, websites and any other means we can), and I hope
that this group will turn out to be a way of sharing our knowledge to
our common good. After less than a week of belonging, I have already
learnt a great deal (especially things that seem to be common
knowledge in the US, but have not yet reached me here in the UK), and
after a little more research, I'm sure I'll have a number of
questions to put to the group that must rank as one of the best-
informed about PA on the planet.
No doubt I'll get conflicting advice, just as we all have widely
differing symptoms from this [expletive deleted] illness, but that
doesn't make it any the less valuable - so long as it is sincerely
and given, without ulterior motive.
Full marks for a group that is welcoming, sympathetic, and amusing,
as well as being informative.
Best wishes to all,
Marcus
[Editor's Note: Welcome to the group, Marcus and thank you for your comments.
I'm sorry that you dropped in on us while we are airing some dirty linen, but
hey, you might as well see us at our worst. We'll have the house tidy soon.
You are right - with respect to some treatment regimens, the US is ahead of
Great Britain while GB is light years ahead of the US in providing a healthcare
system that embraces all its citizens. We look forward to hearing from you
whenever you have a question, comment, need to vent or want to share a funny
moment. Kathy F.]

Hi Sandi,
I hope you get some relief very quickly from your condition. In the
meantime, you could buy a single white rose and put it in a glass
vase, then you will know that everyone on this list is thinking of you.
Keep the light shining,
Ian.

Hi Kathy,
I just glanced through the web site you listed on "quacks" and noticed one on
"organically grown" food. My opinion on organic is that the crops are
fertilized
with maure straight out of the barnyard while other crops are ferilized with
chemicals
derived from manure out of the barnyard. Poop is Poop, right? Just my
short-sighted
opinion. LOL. Have a good day.
Janet in Ca
[Editor's Note: Thank you for the poop on poop, Janet, LOL. Kathy F.]

Excellent site, Kathy! Thanks for the link.
sherry z

Hello everyone,
I have been away from the boards for a while and do not know if
I will ever get caught up on the forum. I am over 30 days behind.
I wish I could say it was because I was so busy during and after
the holidays. But the reality is the holidays came and went with
little to no fanfare from me. I have just been TIRED and achy. I
have had 2 episodes of migraines the last of which lasted 9 days.
Last week I went and saw my OB/GYN for my annual check-up and he
noticed a few things during my check-up. At his suggestion we ran
blood tests for Lupus. The tests came back confirming that I do
indeed have antibodies in my blood. We have to wait a few weeks and
rerun the tests to be certain and it is up to my rheumy to make the
final call. We will wait and see what happens from here.
At first I was upset, but the more I looked into Lupus the more
it explained the totality of my physical complaints. Maybe now I
will get on some medication that will improve my quality of life.
Waiting to see what happens next
Sandi

To all our new people, here is a wonderful site that you can refer to if you are
uncertain about
whether claims people are making are true. Does it sound like anyone we've
seen here?
http://www.quackwatch.org/01QuackeryRelatedTopics/spotquack.html
Kathy F.

It is so hard for the new people in this group (me, me, me) to know
which information posted is fact/fiction/just individual beliefs. I
feel so very overwhelmed and very much appreciate your efforts in
blocking those that choose to deceive. I am naive to this disease
that wreaks havoc on us. I really want to do the things that help me
take control of my body again and not feel this disease has control.
Thanks....
Sandy
Pacifica, CA
{Editor's Note: I'm sorry that you had to see any of this, Sandy, but it is a
good reality lesson - there are people out there who are out to help themselves
- not you. The overwhelming majority of people on this list are genuine,
sincere, giving and supportive and they will share with you their experience to
the best of their ability. They will not attempt to deceive you and they will
not get angry if you say that this treatment didn't work for you even if it
worked for them. Most people are here to help you. Please make extensive use
of our archives as they contain a wealth of value information. Please ask lots
of questions and then use your own innate intelligence to make decisions for
yourself that you believe are the right ones for you. Kathy F.]

A poster recently claimed that this site did not allow other points of view
to be heard. However, we allowed her to state the following in a post:
"My greatest concern regarding
And this:
"Research has shown several connections between food, nutritional
supplements
We took great pains not to edit this person's posts despite her making
utterly unproven claims that oxidative stress causes arthritis, that foods cause
arthritis and there was even one post in which she emphasized all the ways in
which we could be boosting our immune systems - despite the fact that we
already have overly active immune systems and the only things that have worked
on
the majority of people are those medications that work to modify the immune
system - not boost it.
We did not edit a single word in any of her posts so claims by her that we
were not allowing her views to be heard were patently untrue. In other words,
she lied. The problem is not that we didn't allow her to tout her views -
the problem is that we disagreed with her and said so quite emphatically. This
got me to wondering, why would this woman lie and get so nervous when we
disagreed with her?
This woman's sole purpose is to try to hook you into going to her website.
Once you get there, she will try to convince you that you need to buy from
her "A specially formulated Vitamin and Mineral Product; a very powerful,
specially formulated antioxidant; a specially formulated Essential Fatty Acid
AND,
a specially formulated Calcium/Glucosamine". In other words, this person did
not join this list to help anyone. She joined the list to make money off
our members.
This person is a fraud who came here to try to take your money. She will no
longer be allowed to post on this list.
Kathy F.
Moderator

Kathy F.,
When I joined this site, it was to gain knowledge about your experience with
this disease
as well as the many others who post here. To me this site has been more than a
support
group, it has felt like a group of friends trying to help each other. I do not
like to see a
bunch of "snake oil" theories promoted here because they can be found all over
the
internet. One never knows if you believe most of what they claim. When someone
like
Brent, Mr. Nicholas or you state something or quote it from an article, we know
that is
information that can be relied upon. I propose we concentrate more on helping
each
other over the rough spots and being a loving support to those in need than
trying to out
doctor our doctors. We all know that some doctors are wonderful and some are
not,
some drugs are a miracle for some but not for all, and some foods and
supplements are
helpful for this or for that, but we can find that info else where. If it works
for a person,
let that person testify to it's properties, we don't need the Dr. quote or the
page it was
taken from in the medical journals. I much prefer to stick with the human side
of this site,
I love to read the posts from personalities like Ian, Betz (who I am really
worried about),
Sherri Z. and Cathi from ma. I thank you all for your knowledge of this disease
and so
many other things, but mostly, I thank you for being HERE when the newbies post
for the
first time so afraid of what their body is doing to them. Or, even when a tough
old woman
like me needs to hear something funny to brighten my day a little. Sorry if I
am a little off
the mark in stating my preferences here, but this is too valuable a place to
come to have
anyone mess it up by messing with our prestigious leader. Love ya K.F. God
bless and
prayers for everyone.
Janet in Ca
[Editor's Note: Janet, I can't say how much your post means to me.
Unfortunately, I had to read more assaults and smears in a post early this
morning from someone else, but I won't subject the rest of you to more of this
silliness. I had almost decided to walk away from the site rather than be
subjected to personal attacks and smears if I dare to speak my mind to someone
who doesn't like it. None of us needs to read the childish nonsense of name
calling. I hoped I left that when I left the 4th grade. I moderate this site
as a labor of love - and no one is forced to stay here if they don't like it or
don't like me. The site is not about me. The site is about helping people find
the things that really work - it is not about people thinking they can take
potshots at others whenever someone challenges what they say. I learned years
ago that when someone disagrees with you, if you have good information to
respond with, you do so. Some people, however, get frustrated if they can't
"win" by intelligent discussion, so they make pithy personal attacks instead.
That is not helpful and neither are they and all they do in the end is abase
themselves.
So, thanks so much for the cyber pep talk. This group is the success that it
because of the people who post - most of whom are thoughtful, giving, caring and
in need of real answers - not babble, not theories and certainly not pejorative
nonsense from a few individuals who get nasty when disagreed with. Let's get
back to helping others and being the loving and supportive group that almost all
of us are. Thanks, again, Janet, for giving me the boost that I needed. Kathy
F.]

Melissa - you're on my prayer list. Praying for big-target veins!
best,
sherry z

Hi Janice and Laura,
I worry about my memory too. I don't know if the concussions I have
suffered are causing it, or whether it is the fatigue from PA - or just
plain dementia. My memory is lousy, but not nearly as bad as was when
I was taking Enbrel - I have had some improvement, but I still can't
remember names like I'd like to. Even though I do psychometric (IQ)
testing as part of the many things I do in my work, and I know for sure
that my memory is still above average for a person my age, I still know
that it is far less than it used to be. I never used to forget
anything; now, I have to make lists of, of,... well just about
everything. I also make many typos that I don't catch until I read
what I have written a day or two later. So, if you notice any, don't
worry, I'll see them tomorrow - and I'll feel frustrated. ...brent

Hi Pete,
It sounds as if you have had a very rough time. I am glad that you
are back and thank you for taking the time to pass on your helpful
advice. Best wishes for a full recovery for you and for your wife!
Cordially,
Brande

Maraika
It was I, not Kathy F., who used your email addy instead of your
name in referring to a quote from your post. I was responding to a
reply to my reply, and the part I quoted only included

Hi Laura,
I've been there and done that with the staring out into space. I just tell
everyone I'm
watching the birds. I was so worried about the dementia part that I discussed
it with
my PC last summer. He said that both his parents had suffered with alzheimers
(sp?)
and did not want me having that much stress unnecessarily so he sent me to the
behavioral dept. for a test to prove that I was just fine. I scored a 99%. It
was a
relief. I just wish they would have had a suggestion or two about how to
control
foggy stages.
Janet in Ca

I am not belittling the condition of PA nor the suffering and pain involved
but I don't think the comments made at the end of my last posting were very
productive to the group as a whole ie: (Weeds, berries and other things off
which a lot of loosy-goosy people make a ton of money by making outrageous
claims, have NOT been demonstrated to cure or stem the progress of the
disease.) I have never in any subject that I have posted about, claimed
that anything is a CURE nor do I advocate the use of weeds/berries etc. I am
not a loosy-goosy person - whatever that means. And I think these comments
made as a postscript to my posting were inappropriate. I contribute to pass
on information and to give people choices. Negative comments do not benefit
all group members.
I understand how painful, frustrating and debilitating PA can be but I
don't think rudeness is a part of this condition. I have been part of this
group for some time, I use my own name in all instances and any comments
could have been addressed to me in the first person. (Re - I was replying to
the person that made that statement urhealth@) - I'm not the one who said
it. )
The theories and statements referred to in my previous post to came to me
via Dr. Ray Strand. Ray D. Strand, M.D. is quickly becoming one of the
world's leading authorities in Nutritional Medicine. Dr. Strand is an
international speaker, and consultant on health and preventive medicine as
well as the author of, What Your Doctor Doesn't Know About Nutritional
Medicine May Be Killing You. A graduate of the University of Colorado
Medical School, Dr. Strand has been in private family practice for over 30
years. From my understanding his comments were that once pain was eased
with anti -inflammatories (inflammation causes pain so they go hand in hand)
then many people do not look beyond that to which actually causes the
inflammation, hence pain, and his theory that it is the oxidative stress
causing excessive free radicals which causes many diseases in the first
place. But if you feel you are able to offer any researched scientific proof
that my understanding of how degenerative diseases occur is not correct I
would be very interested to see them. If you wish to disagree with my input
at any time please do so off group as I don't wish to continue in a slanging
match. We are all entitled to our own opinions and views - aren't we? Some
of the comments made, not just to mine, but also other previous postings
that were not specifically about medications and the use of them, could lead
anyone to think that this group is a closed group. If you don't post an
agreement on medications you have used, are using, or going to use you are
going to be responded to in a negative way. I am sure there must be readers
who are open to learning that there are other opinions. As I am taking no
medications myself so unable to partake in many discussions re the benefit
of this type to another I felt that my researched input may have been of
value to other members who are looking outside the square and open minded to
receiving other possibly helpful information. I was asked to back up the
comments made in my previous posting and I have listed some of them and
other opinions as follows:
Anti-inflammatory - Counteracting or suppressing
Inflammation - a localized protective response elicited by injure or
destruction of tissues, which serves to destroy, dilute or wall off both the
injurious agent and the injured tissue. The cardinal signs are - heat,
swelling pain and redness.
Oxidative stress
a condition, in which the effects of pro-oxidants (e.g. free radicals,
reactive oxygen and reactive nitrogen species) exceed the ability of
antioxidant systems to neutralize them.
http://lpi.oregonstate.edu/infocenter/glossary.html#rheumatoid%20arthritis
Pro-oxidant
an atom or molecule that promotes oxidation
<http://lpi.oregonstate.edu/infocenter/glossary.html#oxidation
atom or molecule by accepting electrons. Examples of pro-oxidants include
free <http://lpi.oregonstate.edu/infocenter/glossary.html#free%20radical
radicals, reactive
<http://lpi.oregonstate.edu/infocenter/glossary.html#reactive%20oxygen%20spe
cies
<http://lpi.oregonstate.edu/infocenter/glossary.html#reactive%20nitrogen%20s
pecies
These studies appearing in medical journals like the New England Journal of
Medicine, Journal of the American Medical Association, British Lancet, and
Annuals of Internal Medicine report that beyond any doubt the "root" cause
of well over 70 chronic degenerative diseases is "oxidative stress."
http://www.bionutrition.org/oxidative-stress.asp
Department of Biochemistry & Molecular Biology, Albany Medical College, NY
12208, USA.
In recent years oxidative stress has been implicated in a wide variety of
degenerative processes, diseases and syndromes, including the following:
mutagenesis, cell transformation and cancer; atherosclerosis,
arteriosclerosis, heart attacks, strokes and ischaemia/reperfusion injury;
chronic inflammatory diseases, such as rheumatoid arthritis, lupus
erythematosus and psoriatic arthritis; acute inflammatory problems, such as
wound healing; photo-oxidative stresses to the eye, such as cataract;
central-nervous-system disorders, such as certain forms of familial
amyotrophic lateral sclerosis, certain glutathione peroxidase-linked
adolescent seizures, Parkinson's disease and Alzheimer's dementia; and a
wide variety of age-related disorders, perhaps even including factors
underlying the aging process itself. Some of these oxidation-linked diseases
or disorders can be exacerbated, perhaps even initiated, by numerous
environmental pro-oxidants and/or pro-oxidant drugs and foods.
Alternatively, compounds found in certain foods may be able to significantly
bolster biological resistance against oxidants. Currently, great interest
centres on the possible protective value of a wide variety of plant-derived
antioxidant compounds, particularly those from fruits and vegetables.
Raised levels of F(2)-isoprostanes and prostaglandin F(2alpha) in different
rheumatic diseases.Sections of Geriatrics and Clinical Nutrition Research,
Faculty of Medicine, Uppsala University, Box 609, SE-751 25 Uppsala, Sweden.
Basu S, Whiteman M, Mattey DL, Halliwell B
OBJECTIVE: To evaluate oxidative injury and inflammatory status in various
rheumatic diseases by measuring the levels of isoprostanes and
prostaglandins in serum and synovial fluid.
CONCLUSIONS: These data suggest that both free radical mediated oxidative
injury and cyclo-oxygenase dependent inflammatory responses are closely
correlated in various types of arthritis.
Medical News Summary: Paracetamol a safe and effective alternative to other
anti-inflammatories Date: 24 January 2005 Source: Express Newsline
Medical News Summary (summary of medical news story as reported by Express
Newsline): The University of Queensland in Australia conducted a study
examining the safety and efficacy of paracetamol as a pain reliever compared
to other drugs. It was found that paracetamol was just as effective in
reduce arthritic pain as Celebrex and Ibuprofen. Furthermore, paracetamol
produced fewer side effects and was less expensive. Celebrex became infamous
for it's recently discovered risk of heart disease. Anti-inflammatories are
notorious for their associated risk of stomach ulcers and bleeding.
Researchers recommend that all osteoarthritis sufferers should reassess
their use of anti-inflammatories.
URL: <http://www.expressnewsline.com/0605/fullstory0605-insight-
http://www.expressnewsline.com/0605/fullstory0605-insight-
NSAIDs are used primarily to treat inflammation, mild to moderate pain, and
fever.
http://www.medicinenet.com/nonsteroidal_antiinflammatory_drugs/article.htm
Medical Research News Published: Thursday, 7-Apr-2005
Oxidative stress, an imbalance between toxic compounds and defense
mechanisms, and prevalent in the dialysis process, has been linked to
numerous adverse complications in end-stage renal disease (ESRD) patients.
The imbalance is caused by the overproduction of reactive oxygen species
(ROS), or toxic compounds, and lack of antioxidants to fight these toxins.
In fact, the hemodialysis process can cause loss of these necessary
antioxidants. Many ESRD and hemodialysis patients are in a state of chronic
inflammation induced by the dialysis process which further enhances
oxidative stress. <http://www.news-medical.net/?id=9072
http://www.news-medical.net/?id=9072
Conclusions and Implications For Future Research
As discussed above, there is considerable evidence from in vitro and in vivo
studies that in a variety of tissues, hyperglycemia and possibly elevated
FFA levels (both alone and in combination) result in the generation of ROS
and RNS and consequently increased oxidative stress. In the absence of an
appropriate compensatory response from the cell's endogenous antioxidant
network, the system becomes overwhelmed, resulting in redox imbalance,
thereby further exacerbating the situation.
<http://www.medscape.com/viewarticle/448389_5
http://www.medscape.com/viewarticle/448389_5
Recent studies by several laboratories, using a variety of organisms,
indicate that oxidative stress is a common denominator underlying many
diseases and environmental insults which can lead to cell death in virtually
all aerobes (9). It is also becoming clear that a variety of different
biotic and abiotic stresses cause their deleterious effects, directly or
indirectly, via reactive oxygen species (ROS) generation.
For example, numerous toxic environmental chemicals such as xenobiotics,
pesticides, herbicides, fungicides, ozone, cigarette smoke, and radiation
cause their harmful environmental effects via generation of free radicals
and other ROS.
Herein, I will focus on oxidative stress, its causes and consequences, and
mechanisms employed by organisms to cope with it.
http://www.scielo.br/scielo.php?script=sci_arttext
<http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0100-879X2005000700
003&tlng=es&lng=en&nrm=iso
&pid=S0100-879X2005000700003&tlng=es&lng=en&nrm=iso
One of the triggers of the degenerative process of cancer and other diseases
is damage to DNA and other crucial organ, vascular and skeletal cells by
free radicals. Thus, certain antioxidants are common primary nutritional
tools in cancer in heart disease management, and are being investigated for
similar roles in osteoporosis, arthritis, dementia and diabetes. Antioxidant
vitamins and minerals factor in most degenerative diseases. Plasma
antioxidant levels have been shown as important factors in arthritis,43
osteoporosis,44 CVD,45 diabetes46 and cancer.47
<http://www.nutrilearn.com/hsr/5c1feat1.html
http://www.nutrilearn.com/hsr/5c1feat1.html
Does measurement of <http://dx.doi.org/10.1016/j.cca.2005.09.009
damage to DNA have clinical significance? by Marcus S. Cooke; Ryszard
Olinski; Mark D. Evans [Clinica Chimica Acta (v.365, #1-2;
pp.30-49)].Oxidative damage to DNA is the seemingly inevitable consequence
of cellular metabolism. Furthermore, despite protective mechanisms, cellular
levels of damage may increase under conditions of oxidative stress, arising
from exposure to a variety of physical or chemical insults. Elevated levels
of oxidatively damaged DNA have been measured in numerous diseases, and as a
result, it has been hypothesised that such damage plays an integral role in
the aetiology of that disease. This review examines the validity of this
hypothesis, exploring the mechanisms by which oxidative DNA damage may lead
to disease. We conclude that further validation of biomarkers of oxidative
DNA damage, along with further elucidation of the role of damage in disease,
may allow these biomarkers to become potentially useful clinical tools.
Sulfation of a polysaccharide produced by a marine filamentous fungus Phoma
herbarum YS4108 alters its antioxidant properties in vitro by X.B. Yang;
X.D. Gao; F. Han; R.X. Tan [BBA - General Subjects (v.1725, #1;
pp.120-127)].
Free radicals and other reactive oxygen species (ROS) are generated by all
aerobic cells and are widely believed to play a significant role in aging as
well as a number of degenerative or pathological diseases. According to
recent research, oxidative stress seems to play a role in causing both RA
and OA (Popoprigorova VG et al 2005; Regan E et al 2005). Researchers have
found that patients with RA have significantly elevated levels of oxidative
products in their blood, leading the researchers to propose that the
effectiveness of RA therapy could in part be measured by the level of
oxidative stress (Cai WC et al 2005; Sarban S et al 2005).
And http://www.inflammationnation.com/ book written by Dr. Floyd (Ski)
Chilton, an internationally renowned scientist, sounds the alarm about our
country's most critical health issue: INFLAMMATION
Since oxidative stress is one of the main caused of DNA damage the DNA
repair system of cells can be considered part of the cells anti-oxidants
defence system. The oxidative damage caused by free radical activity from
environmental pollutants and poor lifestyle choices has overwhelmed the
natural anti-oxidant defences within the cells of our bodies. The cell is
the fundamental unit of life and proper cellular function is the essence of
health. Dr.Myron Wentz Ph.D in Microbiology and immunology.
Some of the greatest scientists of our time were laughed at or ridiculed for
their persistence in their beliefs. One was awarded two Nobel Prizes. Whose
breakthrough studies on the positive benefits of vitamins C as a
preventative therapy is an example of scientific investigations in medicine.
IF YOU KEEP DOING WHAT YOU'VE ALWAYS DONE, YOU WILL GET WHAT YOU'VE ALWAYS
GOTTEN
Maraika Mason - Dip.Clin.Nutrition
Degenerative Disease Resourced Information
Email: UrHealth@...
[Editor's Note: It never ceases to amaze me that when I disagree with someone,
I am labelled as "rude" but when others disagree with me, they label themselves
as "right". So it is with you. This site, unlike so many, is of value because
we would rather run the risk of being accused of being called "rude" than let
someone get away with making claims that THEY (or some doctor they quote at
great lengths) knows the cause of arthritis when, in fact, thousands of
researchers all over the world (who are every bit as learned and experienced as
the doctor you quote) do NOT claim to know the cause of PA. I know you consider
yourself a great authority on things, but you stated, quite definitively in an
earlier post, that oxidative stress was the cause of arthritis. This site is
one of the most valuable PA sites on the internet because we do not let such
claims go unchallenged. We are of value because we are NOT an open site that
allows anyone to claim whatever they want. Dr. Strand's THEORY may some day be
demonstrated to be correct, but at this point it is NOT widely accepted by the
majority of people most heavily involved in arthritis reasearch. Many
researchers believe the cause lies in DNA, not oxidative stress. There are lots
of PA sites that are unmoderated where you can make any claim you want and it
will likely go unchallenged, but this site is not among them. This site does
not do its members a service by letting every claim by every doctor be taken as
gospel. To date, ONLY DMARDs and Biologics have been scientifically
demonstrated to slow the progression of PA. ONLY THOSE DRUGS. PERIOD. It is
criminal, in my view, to waste the time of people who are suffering by letting
them chase potions and "cures" and other things that do not work. If you want
to post with abandon on such a site please go right ahead - but this site is not
here to be egalitarian. It is here to give people information that has the
greatest chance of actually helping them. This site is of value because we urge
people to consider following a course of treatment that is most likely to work
for them. Any site that doesn't do that is playing with people's lives and
health and those other sites that let alternative people get away with saying
anything they want even though there often isn't an iota of scientific evidence
behind their statements are vile places.
If you want a site where you can make any claim you want, I urge you to go
elsewhere. If you wish to be on this site, your views are allowed to be
expressed, but how curious that you wish to stop me from expressing mine because
I don't agree with YOU.
How interesting that when people disagree with me, I don't call them names, but
you had to resort to calling me "negative" and "rude", rather than merely accept
that my views are "other" than yours in some cases. We have far more ground
where we agree than disagree, but if cannot accept any criticism when you make
statements such as "oxidative stress" causing arthritis, then know this: This
is not the place for you. This site is of value precisely because statements are
challenged thereby allowing people to make up their own minds.
You said that negative comments do not benefit group members. I disagree.
Positive and negative comments enable intelligent people to do their own
research and make up their own minds. However, negative comments made about ME
because I deigned to disagree with YOU absolutely do not benefit group members.
You do not have an invitation to call me names simply because I disagreed with
you. THAT is rude! You can certainly disagree with my views, but please take
leave your petty, pedantic pejoratives at the door.
Kathy F.]

Hi, My Name Is Marsha, If it's Methotraxate that your talking about,
I Have been on it almost a year, and I Have been Feeling great. I
Have Rhuematoid Arthitis i was originally diagonosed with
SpondolArthitis when i was 20 (Sorry I Know it's spelled Wrong) Then
i got rheumatoid last year when i was 27. I Love it, and like you
i'm around small kids and i live w/ my 88 year old Grandma too, I
have not noticed any major side effects but i'm also taking Folic
Acid every day and Was taking folinic Acid too, I taking 8 pills 1
day a week but my rheumatologist told me to take them at night
before i went to sleep to stop in minor side effects that i may get.
I Have blood drawn every 6 to 8 wks and all of my reports have been
coming up normal lately. I Have not had any major pain up until
about now, I live in michigan and we now have snow so i have been
having a little pain but nothing like i was having. It's pain i can
live with now.
---

Since you are going to want to talk to your rheumy anyway about
stopping Humira while you have this infection, I think it is useful
to remember that your rheumy is also a fully trained and licensed
medical doctor who is perfectly capable of recognizing and treating
ordinary boils and infections, especially given how common these
things are among people with whacky immune systems. If it were me,
I'd see my rheumy first and IF and only IF he feels that I need a
different kind of doctor would I bother finding one. I have had
small infections in my armpit glands from time to time and my
rheumy's view is that it is probably better to let them run their
course than to start and stop Enbrel and MTX every time a minor
infection presents itself. He feels that the trauma to the immune
system from the start/stop/start of the medications if far worse than
having to put up with the annoyance of minor infections. I am
fastidious about keeping the infected area clean and I wipe the area
frequently with alcohol wipes, but I have not stopped the meds. It
sounds like your boil is much worse than the small boils I get
occasionally, so your rheumy may feel very differently than mine has
with my small stuff. Let us know what you decide to do and what your
doctor(s) has to say. Kathy F.]

if you are not on a blood thinner then you might want to try msm cathy from
ma

Hello-
I am a researcher from the University of Oklahoma who is studying on-
line social support for health-related issues. Despite the large
number of groups dealing with health-related topics in recent years,
there is relatively little information about people's perceptions of
the usefulness of these groups.
If you would like to participate in a brief survey about on-line
support groups, the link to the survey is:
http://faculty-staff.ou.edu/W/Kevin.B.Wright-1/supportnet2.htm
All responses are anonymous, and I am willing to provide participants
with information about the study results once it is completed. In
addition, I would be happy to answer any questions to related to what
is currently known about on-line social support.
Thank you,
Kevin

Hi,
My daughter's rheumy instructed me to call him first with any medical issues she
may encounter because she is on Enbrel. Your boil may be a side affect of the
Humira. Call your rheumy and they will advise you as to which doctor you should
see.
I bet they will want to see you.
-Louise

I am totally puzzled about which doctor I should see:
I started taking Humira 11/7. It has been marvelous
and I feel as if I have a life again.
Now, three months later, I have what appears to be an
abscess/cyst/boil type bump in my arm pit.
I had a similar lump years ago, after I had surgery.
Then it was basically an isolated pocket of infection
that was cured by a short course of anitbiotics.
I suspect that this is the same, and I need to do the
antibiotic / suspend humira short term thing...
My problem is: who do I see about this? I have no
'primary care' doctor (long story) I have rheumy,
dermy, and a remarkably talented Nurse practioner that
looks after my diabetes and sends me to other
specialists as needed. Our local 'emergency' clinic
is a total joke, and I won't waste time with them or
expose myself to the flu in them.
I expect that whoever I see will get in touch with the
rheumy about how long to cease the humira, but I don't
want to waste my time and co-pay with a string of 'see
x' no, x can't do it, see y. wait, y needs to
consult with N, G and H...
any input folks?
CMPete
Quilts With Poodle
'.....now times are rough and I've got too much STUFF!!'
J.D. Buffett
I have a blog now!! And there is ACTUALLY stuff on it!
http://cmpetequiltspoodle.blogspot.com/

Hello!
Well I thought I would share with you all my appt with my rheumy last
tuesday (sorry I've been behind) Let me first recap what happened at my last
visit before this one. That visit was 2 years ago, and at the time, she
kept trying to tell me my pain was fibro related and not PA and to deal with
it. I of course had a problem with this and kept arguing with her to do
something, anything. So she sets me up with a pain doc.....(didnt go due to
change in insurance), that was my first issue. The idiot who was doing the
remecaid infusions was a pain my bootie! she was an older RN and would see
me coming and tell me i'm not doing your iv. Uhm look lady, you're all
that's here, yes you are. I am used to being a human pincushion and had no
issues with multiple sticks. I may have tears running down my face, but I
never scream or wince, or even move, I told them keep going until I cant
take it any longer. Well she didnt like that at all.... and I spoke to the
rheumy at that time about her behavior. I have sucky almost non-existant
veins and that stupid nurse didnt help a thing. My third and final issue
was I was working in a doctor's office at the time, and my office manager
happened to be all cozey comfy with the rheumy's office manager and decided
to discuss my health issues, my treatments and my ability to work etc. and
questioned my time off. I was FURIOUS!! With all the hippa laws etc they
have the gall to discuss my health behind my back. I went in there and told
the rheumy what was going on and i wanted it stopped immediately. I knew
for a fact it was going on because only things that were discussed at the
rheumy's, nothing i had shared with my office manager was getting back to
me. So let's just say I was a little, ok alot hissy at the time. I was
done and walked away. I said ya know what, I"ll take raptiva for my skin
and forget the rest...
Ok, BIG mistake..... now two years later, I go back right. OMGDS she was
E-V-I-L to me!!! she walked out of the room and i looked at my hubby and
said "i think i p@ssed her off the last time I was here" and my hubby says
"ya think?????, UHM YES" She was all ready to be nasty and I showed her my
feet and my hands and she stopped short of saying what she was going to say
to me because she could see things have gone way south. She took a chest
xray and did the tb test... she took xrays of my hands, and my knees (not my
feet which i felt was odd cuz they are disfigured) did the baseline
bloodwork, and then also gave me two shots of depo medrol to get me
moving.... I had waddled in there using my walker and was really not doing
well at all. She just gives me this attitude and "well it wont work as well
without methotrexate you do realize that?" (i can't take it due to liver
disease) I'm like uhm, yeah I understand that fully, and dont you think I
should at least try, it may not cure what ails me now, but stop it from
becoming any more deteriorated than I already am!!!! So its been a week
now, and I'm still waiting to hear if the ins approved the remecaid. They
said it could take 2-3 weeks because everyone is going thru re-certs right
now and new apps as well so they are backlogged. Whatever, just let me
know. I am praying, and please those of you that believe in a higher power,
pray that my veins can handle the iv's this time around. I am drinking alot
more water these days, so maybe, just maybe.... they got me on the first
stick for my bloodwork this last time around which is amazing.... so maybe
this time it wont be as hard. They also have a gem on wed's giving the
iv's... she's like a big wig at a labour and delivery at a major hospital
here in our area, suffice it to say, she is good!!!!
SOOOOO.... with that said, I'm still on pain pills, tons of advil, no more
anti-depressants, and awaiting my remecaid approval..... THought I'd share
=))))
--
I can do all things through Christ which strengtheneth me Phil 4:13

I had nail problems for years, purple nails, purple streaked nails,
dented, pitted, grooved, striated, split deformed nails, nails with
active bleeds under the nails, swollen nails, ones that look and
FEEL like they were hit by a hammer. Weird nail pains at random
times, even when they look OK.
The best treatments for me were systemic,,, steroids, enbrel,
sunlight, methotrexate, all work some on my nails,,but locally I
would scrape away the dead debris, (if you draw blood that is too
much), keep affected nails very short, and used betamethasone
ointment (shoved in with toothpick) or lotion immediately after
trim/debridement(the clear liquid).
Basically I treated the under nail lesions like skin lesions, and
used skin meds to reduce inflammation. WARNING Tar ointment is good
for skin and scalp lesions, but turns nails brown and reeealy ugly.
I used the clear nail strengthening varnish/glue to keep nail
fragments intact and waterproof. I'm a guy and often wear gloves at
work.
Right now my fingernails are nearly normal, my toes not too bad.
I haven't talked on forum for about a year. Dec 9 2005 I fell due to
sore, unreliable knee, had concussion, memory loss, and it took a
few weeks before I could understand writing or spoken english. Still
not 100% back, total recovery unlikely now, but headaches mostly
gone.., and I can usually function after a half hours warmup, and
work full days with naps before work and at midday. Steroids to help
brain swelling really helped psoriasis, the BRAIN FOG from
methotrexate hard to distinguish from blunt trauma. Paycheck stubs
say I worked alot of hours, don't remember most of the year.
Had bad cold in Dec 2006 which turned into autoimmune asthma,
illness was infection hitting weak immune system followed by
autoimmune revenge/rebound when usual meds stopped, then restarted,
still recovering with help on a few hundred mgs of steroids again.
(to help breathing) Sick enough so now the doctors call me, WEIRD to
get unsolicited Doctor calls during your favorite show. yes doctors
plural, dermatologists, pneumonologists, rheumatologists, even some
radiologist who wants followup,, more tests....guess this means I
won't be singing on American Idol.
I have noticed that brain damage makes TV more enjoyable, even if
you can't follow the plot.
My wife recovering from hip replacement and multiple fractures after
trying to teach my daughter to drive. Insurance replaced car in
weeks, wife rehab taking about a year.
We all take a licking and keep on ticking!! And my nails are OK.
pete from Baltimore

In a message dated 1/24/2007 7:12:47 P.M. Pacific Standard Time,
deannaacarrigan@... writes:
I have good disability ins thru my work
that I think would carry me thru until the SSD kicked in. I have
worked full time for 30 years and am 49 years old. Any insight anyone
has on this would be greatly appreciated.
Hi Deanna...I went on long term disability a few years after I got diagnosed
and before I figured out all of the medications. If your rheumy won't help
you, do you have another doctor that can? My rheumy who did the initial
disability paperwork retired, so my primary care doctor picked it up for me as
the new rheumy was not overly sympathetic. The disability was the best thing I
did to take care of myself...I had the doctor write it so that I could still
work part time but the extra rest really, really helped get myself better.
If you can't get your current rheumy to help, find a new one...it's worth
it:-)
Rachel

Dear Jack,
You have such perfect timing! I saw one of your newsletters and was
wondering how to look up the past issues. Thank you! And, thank you
so much for taking the time to gather all of this information and
sharing it with us all! I saw so many articles listed in the index
that I can't wait to start reading.
With Gratitude,
Brande
[Editor's Note: Thank you, Brande, for saying what so many of us feel. Jack's
research is a gift to all of us and we appreciate the many hours he puts in each
month to bring us the lastest news. I had the privilege of speaking with Jack
on the phone this week - it was like chatting with an old and valued friend. He
deserves our gratitude and deep appreciation for all he does for us. Kathy F.]

Hi Howard. Good question. And thank you for your comment. It is nice to have
my input appreciated. Just a comment from me. If you are taking a high
potency multi vitamin this should contain high doses of Vit C as well as all
the other vitamins necessary to work in synergy. Vit. C is water soluble so
it goes in quickly and goes out the same . It is used in the formation of
collagen, the connective matrix of your flesh, and as an anti oxidant to
help protect your cells from oxidation. Vit. C easily loses its value in
food through light, heat and chemicals. A cut lettuce will lose half its Vit
C in 48 hours. The greatest biochemist of the century, double Nobel Laureate
Dr. Linus Pauling first recommended multi gram doses of Vit C in the early
70s and was rejected by the conservative community of the time. In 1928
Albert Svent-Gyorgyi isolated a chemical that protected fruit against
discoloration (oxidation) and infection when bruised. In 1937 he won a Nobel
Prize for his discovery - the chemical substance we now know as Vit C. If
Vit C is taken in the amount of 2 - 12 GRAMS per day it can cause stomach
upset in sensitive people. But if taken as a mix of magnesium ascorbate,
calcium ascorbate, potassium ascorbate and zinc ascorbate this will give
higher levels of Vit C in blood serum and maintain those higher levels for a
longer time. Everyone has different biochemistry and unique lifestyles. The
amount of Vit C needed daily for optimum performance is directly related to
individual ingestion, absorption, utilisation, metabolism, excretion, work
environment and physical, mental and environmental stresses. This relates to
water soluble vitamins. Vit C plays many important roles in the body. It is
a co factor for many enzyme systems involved in such functions as collagen
synthesis. We need Vit C to quench free radicals and to prevent lipid
oxidation, support adrenal function, to regenerate other antioxidants and to
maintain immune function. If you have any other question please feel free to
email me and I will do my best to answer. If you are interested in the
article "Taking too much of one vitamin can prevent the absorption of
another" just ask and I will send. Regards Maraika

Here in a couple of weeks, I'm going to see a rheumatologis for the first time
in 8 years. I was just wondering if there was a list of questions or things
that I should take with me. It's been awhile and I'd like to make sure that I
start things off on the right foot again.
Thanks,
Rachel Engle

Hi,
I have been reading your post (Arthritis posts) about OVERactive immune
systems and taking of immune boosters. I have been taking 500mg of Vit. C
daily with a multiple vit. And I have informed my RD of this from day one.
He has no problem with it however, since some Dr's are so busy and they fail
to keep on top of certain things--by personal experience I have been close
to death due to this very reason and received an apology from the Dr--how
would you know if this is too much? And how do the Dr's really know since
each individual reacts to the same thing differently?
And is it true we shouldn't be taking Vit. Bs? Even if we suffer from
neuropathy? I was told that I shouldn't by a FNP but if I don't I can't
stand dealing with the neuropathy. I have the creepy crawling sensations and
it feels like I'm being stuck by a hot poker and the Vit. Bs help control
this.
And by the way, Arthritis Today has articles on foods that are natural
inflammation fighters. No there is no said diet to CURE this because that
isn't realistic. There is no cure. However, it has been proven that diet can
help. The Mediterranean diet for example. It helps reduce inflammation in
the body. And this is what I am after.
Thank you for any answers to my questions.
Best Wishes,
KarenCorie
--
SPEEDY :-)
Meds:
MTX 15 mg; Prednisone 5mg; Leucovorin 5 mg; Armour Thyroid 60 mg
Supporters:
MSM; DHEA 25 mg; Omega3 fish oil 8 daily; Vit. C; Vit. D; B-Complex; Vit
B-12;
Lithium Ortate; Osteo Comlex; Glucosamine & Chondroitin; and Essential
Minerals, AND CALCIUM 1500 mg
"Love endures all things."
great MSN animations:
http://groups.msn.com/TheAbyssOfAnimation/

Hi
If I were you I would see another doctor and yes, I think you need a chest
xray, just to satisfy your mind. I would be the same way. I don't think it is
from PA. It could be a reaction from not taking enbrel, did you look up the
side effects?
I have psoriasis but I am not on enbrel. I didn't like the reaction you could
get.
Anyways, I will say a prayer for you. Take care of yourself and see another
doctor. Sometimes you just have to tell them what you want and they have to
perform the service, you are paying them!!
Sincerely
Kim Creely
smilin4dannme2002 <smilin4dannme2002@...
Hello,
I have been sick with respiratory symptoms since the first week of
Dec. This is how it started out..I got laryngitis for 2 weeks and
then began with chest congestion. I went to dr. dr gave me a steroid
shot, antibiotics to take by mouth, and something for cough in a pill
form..It was a combination med with decongestant, antihistamine and
cough suppressant. I progressively got worse in about 3 days I was
coughing till I was vomiting..My husband carried me to the local
clinic because it was a weekend..I got a rocephin shot, hydrocodone
cough medicine, before I got home the stuff in my chest was breaking
up so fast that I coughed till I was throwing up again..I was not
diagnosed with pneumonia only bronchitis..I was starting to feel
better by the next day and almost well within a week with the
exception of a nagging dry cough at night...that went on for about a
month and I began coughing and wheezing at night..Last weekend I felt
I was getting sick again with the same bronchitis..I went to doc on
Thur. He said I have allergic bronchitis and allergic rhinitis, and
pharangitis. I got another steroid shot, antibiotics by mouth and
hydrocodone cough med..In the mean time I began having flu like
symptoms..body aches, fever, chills, headache..etc..I called them
back and they are treating it like the flu but not officially
diagnosed..but told to stay on antibiotics and cough med..I am better
with the flu symptoms..but my chest is no better!!
Does anyone have any idea what might be happening or have you had a
similar experience? I take enbrel but have skipped the last 2 weeks
because of all this. My right lung feels like it will just explode
when I cough and I told the dr this but he did not think a chest xray
would be necessary.
Also is any of this related to pa? I feel this stuff has become
chronic..This is going on 2 months..Can pa attack like this? Or is
my immune system compromised due to the enbrel..It is like I can no
longer fight..I am very frightened that something serious may be
wrong and dont know what else to do..If you can help at all please
respond I am desperate and soooooo tired of this..
Sorry this is so lengthy..
Thanks in advance,
Vickey

HI,
Awhile before I was diagnosed with PsA I had something similar happen
to me. I ended up with bronchitis and coughed so hard I separated my
ribs! Anbtibiotics just seemed to make it mad. (hahaha) You may want
to check with your doctor on this but out of desperation I started
taking Benedryl at night. It took a couple days but I could see
myself getting better every day. (In all the sickness had hung on for
like two months) Benedryl is quite an inoccuous medication as my
pharmacist tells older folks to use it like a sleeping pill even.
Can't hurt to try. You must be exhausted with the coughing and
feeling rotten!
Deanna

Hello,
I have been sick with respiratory symptoms since the first week of
Dec. This is how it started out..I got laryngitis for 2 weeks and
then began with chest congestion. I went to dr. dr gave me a steroid
shot, antibiotics to take by mouth, and something for cough in a pill
form..It was a combination med with decongestant, antihistamine and
cough suppressant. I progressively got worse in about 3 days I was
coughing till I was vomiting..My husband carried me to the local
clinic because it was a weekend..I got a rocephin shot, hydrocodone
cough medicine, before I got home the stuff in my chest was breaking
up so fast that I coughed till I was throwing up again..I was not
diagnosed with pneumonia only bronchitis..I was starting to feel
better by the next day and almost well within a week with the
exception of a nagging dry cough at night...that went on for about a
month and I began coughing and wheezing at night..Last weekend I felt
I was getting sick again with the same bronchitis..I went to doc on
Thur. He said I have allergic bronchitis and allergic rhinitis, and
pharangitis. I got another steroid shot, antibiotics by mouth and
hydrocodone cough med..In the mean time I began having flu like
symptoms..body aches, fever, chills, headache..etc..I called them
back and they are treating it like the flu but not officially
diagnosed..but told to stay on antibiotics and cough med..I am better
with the flu symptoms..but my chest is no better!!
Does anyone have any idea what might be happening or have you had a
similar experience? I take enbrel but have skipped the last 2 weeks
because of all this. My right lung feels like it will just explode
when I cough and I told the dr this but he did not think a chest xray
would be necessary.
Also is any of this related to pa? I feel this stuff has become
chronic..This is going on 2 months..Can pa attack like this? Or is
my immune system compromised due to the enbrel..It is like I can no
longer fight..I am very frightened that something serious may be
wrong and dont know what else to do..If you can help at all please
respond I am desperate and soooooo tired of this..
Sorry this is so lengthy..
Thanks in advance,
Vickey

Both my tried and true prescriptions for scalp psoriasis are
dermasmoothie/FS (oil) and Luxiq (foam).

PSORIATIC ARTHRITIS NEWS AND VIEWS
VOLUME- 6 ISSUE- 16
December 31, 2006
NEWSLETTER INDEX FOR 2006
The Newsletter Index will be helpful to those of you who may be new to the
group, or for those who may wish to review specific articles published during
2006. I would suggest that you print out a copy of this index and keep it
handy.
You have two choices to access all the newsletters from 2006. I did not
publish any newsletters from Jan.1st through April 30th. due to multiply
surgeries and the recovery times required.

Hi Deana,
For SSD you need to go to your local SS office as soon as possible and fill out
an
application. You can also call them and someone will work with you over the
phone.
A lady at my local office was wonderful with me and helped me a great deal. You
can
also apply for SSI at the same time if you don't have more than $2,000. (I think
that's
the amount, fog brain) in the bank. It will take at least 5 months no matter
who you are
or what you do. I believe your doctor and how he fills out his share of the
forms makes
a really big difference in whether you are approved the first time you apply.
About
4 months after I sent in my application and my short term disability was getting
close to the end,
I called the 800 number to Social Security and mentioned to them that I had had
a body
scan done a couple months before and where and which doctor had ordered it, and
I am
positive that that info helped mine be approved. It was 5 months exactly when I
got my
letter. But I would make a few copies of the application and keep applying
after each
refusal. Don't give up. Some people go to attorneys, but I think I would call
your local
state representative for help if you need it. You don't have to pay them.
Something else that works for depression is to keep busy. Find a hobby that you
can do
when your hands hurt and one you can do when they don't. I do a lot on the
computer
until my eyes start crossing. Try to keep as active as you can while pacing
yourself. You
don't ever want to overdo. We are always here for you. God Bless!
Janet in Ca

Hi all,
I was diagnosed with PA a year ago. My rheumy prescribed doxycycline and my
condition improved greatly. I no longer have what I'd actually call pain. I do
still have discomfort in my knees, hips, and hands, but the discomfort doesn't
have any effect on my daily activities. I work full-time, travel, visit
friends, and basically do whatever I want to do without the PA holding me back
in any way. I feel very fortunate and if my condition never gets any better
than it is right now, that'll be okay with me.
However, since my CRP isn't as low as my rheumy would like it to be, he
prescribed MTX (5 mg in the morning, 5 mg in the evening once a week). Frankly,
I'm not at all sure I want to take this drug. From what I've read on this site
and others, the side effects don't seem worth it since I'm currently feeling
good. And, even though my rheumy wants my CRP to be lower, it's already in the
normal range.
I'm concerned about a number of the common side effects, including the nausea,
fatigue, and hair loss, but one of the biggest reason's I'm concerned is the
vulnerability to infections and illnesses. I'm frequently around small children
(who always are picking up one illness or another) and I'm also responsible for
two elderly relatives. If MTX makes me more vulnerable to illnesses, the odds
are I'll catch everything that comes around, and that means I won't be able to
spend time with the elderly relatives who depend on me, since they don't need to
be exposed to illnesses.
I haven't had a chance to talk to my rheumy about my concerns and dread telling
him that I don't want to take the medicine. He's a really good doctor, who's
truly concerned about his patients' health, but at the same time, he's not the
easiest person in the world to talk to.
Any thoughts? Am I overly concerned about the problems associated with MTX?
Are the benefits truly worth enduring all the side effects and disrupting what's
a really good day to day existence?
I appreciate input.
Thank you,
Nancy
[Editor's Note: Doxycycline is very effective in treating such things as
early-stage Lyme Disease, but it is NOT a cure for PA. PA is a progressive
disease and doxy and not been shown to slow the progression in any way. It
might have helped you get beyond a flare, but the disease does not go away. The
only medications that will help slow the progression of the disease over the
long term are medications known as DMARDs (MTX is one) and biologics (which are
DMARDs as well). For most of us, there are few, if any side effects. The
effects of the disease are 1000 times worse than any minor inconvenience we get
from the meds, so it is a good trade off. Many of the MTX side effects that you
read about are for cancer patients who are on doses of 800-1000 mgs. You will
be on 5mgs so it is as if you will be taking a totally different drug. Minor
side effects at your dose level may include mild nausea which is easily
controlled by Benadryl or mouth sores which are easily controlled by taking
folic acid daily. No one can say how YOUR body will respond to MTX. For some
people, it is the greatest thing, while others are quite allergic. For some it
works a bit, for others, less so. Since doxycycline will NOT keep the disease
under control over the long term, while MTX might help do that, I cannot see a
good excuse for not taking MTX. A good day to day existence today is not good
if it means tomorrow the disease will reappear after causing significant joint
damage. I held down a very high pressured job in which I was responsible for a
$13 billion loan portfolio while taking MTX, so it needn't disrupt your
lifestyle. It may for some people, and if that happens, there are other DMARDs
and biologics. Kathy F.]

This question was raised a few months ago and there was a good number of
suggestions. A summary would have been good.
I use Clobex very sparingly. I shaved my head and I applied it about 5 times
over a period of a week or so. It seems that the P spots are gone. But I am
sure they will come back. I use Clobex also in my ears. Again,