For those who have Psoriatic Arthritis

I am having a horrible spell now. My toes are swollen and it hurts
to wear shoes, walk, drive, do anything. My hands ache. My whole
body feels like it has been hit by a train or something. I can't
sleep at night it is so bad. I know it takes a while for the mtx to
kick in but who has patience when they are in constant pain? My doc
increased my prednisone to 15 mg a day and told me that if taking 1
darvocet at a time doesn't help take two. I feel like a junkie for
eating so many pills but what can I do?!?! Something has to give. A
person can't live like this. I keep telling myself that things could
be worse. I am not going to die or anything and I know that there
are people that are much worse off than me but I am too young to feel
this bad. I don't mean to whine but it is just not fair!! God, I
just wish I could have a vacation from my body. Some days it is not
so bad. Sometimes I feel almost functional and then it hits me like
a swift punch in the face. Next thing I know I am lying face down in
the mud and I can't pull myself up. I am not feeling sorry for
myself - I am just so angry. Sorry I needed to vent for a moment. I
know stress can make this condition worse and I am under a bus load
of it (isn't everyone). I try not to worry too much but I can't help
it - something always comes up. It seems like just when I think I am
getting ahead something knocks me back down. I just miss my old
life. My friends don't understand why I don't want to go out
anymore. Sometimes I think they take it personally. I just don't
feel like doing anything. Well thanks for listening.
Leslie
Leslie

Unfortunately, I believe this is close to the norm. How frustrating for you!
I'd say you not only got off to the wrong foot, he doesn't even have shoes
to wear! :) Don't settle for that...and most importantly, don't go back to
him! I had to call just about every person in the book to find someone who
was up on current treatments. Even after that, I simply went back to my
incredibly great family doctor for treatment. While she isn't a specialist,
she knows as much as the rheumy's do about my disease (now that I've got her
up to speed...*laugh*).
Some of you who aren't having luck with rheumy's might want to try family
practitioners who have history treating arthritis. It's not always necessary
to see a specialist to get started. This is especially true if you are
thinking about the antibiotic protocol.
deano

Well, I had my first appointment with a Rheumy and guess what? He
thinks there is nothing wrong with me. Maybe I am just imagining the
pain and of course there is no connection with the itchy scalp. Or
so he tells me. Boy what a twit! He thinks maybe lupus or RA but of
course my blood tests are normal so it can't be. Maybe the arthritis
got a fright because it cleared up about 2 days before my visit.
Funny thing was when I told him this, he said I should have got an
appointment when I was having a flare up, I said "I did but it took 8
weeks to get into see him". Unfortunately, he did not have a very
good sense of humour either. When I went in he said "Tell me what
has been happening" I replied with "how long have you got?" He
didn't even laugh or smile, just gave me a foul look. I think we got
off on the wrong foot. Of course, he did suggest I take NSAIDs if I
am in pain and perhaps another blood test when I get the next flare
up. Don't know why if he thinks there is nothing wrong with me.
I nearly fell off my chair when he said there is no connection
between the itching and arthritis. Has anyone else suffered like
this on a visit to a Rheumy or am I just silly. :}

I have really gotten so much out of this group already with the
alternative methods of treatment. My medical history is so much like
the others--have had PA for 20 years, but only diagnosed in the last
5. When I finally found out what was happening, I was living in
Kuala Lumpur, Malaysia. I have felt that my living overseas probably
delayed my diagnosis, but after reading the other posts, I may have
been better off and diagnosed more quickly. Unfortunately, my rheumy
treated me rather conservatively, and, in retrospect, would have been
better off with an aggressive treatment. I was started off with
sulfasalize and a mild anti-inflam. I returned on a trip to the US
and consulted a rheumy, who said he would prefer to be more
aggressive and use MTX. But, I was unable to go that route with my
dr overseas. He did give me a RX for prednesone. When we returned
to the US, after about 6 mos, I started MTX. Right before that I
started on Celebrex. I currently take 20 mg of MTX/week, and 4mg of
prednisone every other day (we have been trying to wean me off that),
400 mg of Celebrex/day, and I have just started on Enbrel. I have
been so fortunate that I have had so few side effects with the meds.
My main problems have been back and feet (I have had surgery on both
feet--I just got my cast taken off from my second surgery). Last
year, I had a major flare in my shoulder, and now have some major
shoulder problems. I started on Enbrel 3 mos ago, and that has made
a world of difference. I had not realized how tired and grumpy I had
become!! My rheumy would prefer that I get on Remicade, but, as of
now, insurance co is not cooperating.
My major flare in my foot, which caused me to search out a dr, came
after a trip that I took to India, and caught a major intestinal
bug. By the time the trip was over (17 days) I could hardly walk. I
know that was a major cause for the flare up, and I am still paying
the price for that. I had a major flare in my shoulder last year.
Right before that, I planted a Fall garden, and grew the greatest
tomatoes. I don't know when I have eaten more tomatoes!! So, now, I
sit here wondering about a couple of topics that jbgreenly and Deano
write about. Antibiotic protocol and diet/gluten. I have read
before that tomatoes could possibly have an effect on arthritis.
I feel that I have sort of eased into my treatment, and I wish we had
been more aggressive about it. Once this PA has a hold on you, the
damage is not reversible.
But, to others who are newly diagnosed, there is hope out there.
Thank goodness for the new meds that are coming out every day for us.
I said before that I have had few side effects-- well almost. I have
always been rather slim, and now I feel very "round". Little did I
know that prednisone is used to stimulate people's appetites. I kept
wondering why I wanted to eat so much! And now, I think that Enbrel
has added to that also.
Thanx for this group.

I did some checking and most drugstores (local and online) have a B-
D brand home sharps container for $2.99.
We took our first full container back to the dr's office and they
disposed of it for us.
Hope this helps,
Marcie

There seems to be some confusion of how to dispose of needles
properly. I searched the web and found this info, I thought it was
pretty good so I'll share it:

Hi Jeanne,
Sorry that it has taken me awhile to respond to your questions but I
have been on vacation. Currently on the 5th day of a two week trip to
the Hawaiian Islands. So far the trip has been nourishing for the
soul and wonderful for the psoriasis. But I still have my uninvited
travel companion "PA" which can make some activities challenging.
I am also very interested in learning more about the antibiotic
treatment for my condition. As you have learned from past posts I
spent several months in the hospital with Rheumatic Fever as a child.
I was only 5 years old at the time (had my 45th birthday yesterday)
but I remember having extreme pain and difficulty moving my legs. The
doctors at the Boston Children's Hospital put me on antibiotics
(penicillin)to fight off this disease. It worked and I lived a
completely healthy life until I began to experience PA symptoms about
10 years ago.
It is interesting to note that I continued taking antibiotics for 13
years without any adverse effects. If I remember correctly I took
500mg of penicillin 2xs per day. I stopped taking the antibiotics
after I joined the Army when I was 18 years old. I honestly believe
that the penicillin probably saved my life.
I have asked two different rheumatologists if they felt that there is
a connection between the Rheumatic Fever and the PA and they both
said that they didn't think so, but I suspect otherwise. Since I have
had success with an antibiotic treatment in the past, the postings
that I have read regarding the use of antibiotics on this board are
encouraging. I will discuss this method of treatment with my
rheumatologist when we meet next month. One question that I have
regarding this treatment is how do you stop the progression of the PA
and possible erosion while you are awaiting the long term benifits of
this treatment? Can one take other anti-inflammatory drugs while they
are on the antibiotic therapy?
Good luck and keep us posted on how you make out.
Joe Godfrey

Michelle, sorry to hear your pain is back. I read what you had
planned, any chance you overdid it because you were feeling so good?
I know my husband says I do this all the time. I really don't think
God is humored by this disease at all. He is there to help us through
this and although He doesn't cause this, we can learn and grow from
this. My prayer is usually Lord help me learn what I need to and then
please get me out of this mess.
Lisa
Editors note <Lisa, No I do not belong to the over do it and get sick school of
thought. In fact, it is very difficult not to go full tilt when you do get a
remission when you have a severe case because the remissions are so far and
few between. My friends scold me all the time though about taking it slowly.
You are right about God. I am a Christian and know that he only gives me what
I can handle, and I know that in his perfect wisdom there is a reason for me
having this illness. It just helps sometimes to make light of things. In fact
One of my favorite gifts from God is my sense of humor!!

Dear PA Group.... I gave myself my first injection today. I did it under the
supervision of the RD nurse in the RD office. They had me hang around for 20
minutes to make surer I wouldn't have an allergic reaction. All was well.
Except about 3 hours I became very agitated and emotional like I had 10 cups of
coffee. My vision got fuzzy and I couldn't concentrate. I was at work, and
since my RD has only prescribed Enbrel 2 or 3 times, I called the Enbrel help
line. They had me talk to a nurse, then a pharmacologist and told me they had
no reported side effects of this nature. After an hour or two I was fine.
I seem to remember someone on this board telling of a similar experience. I am
prone to weird drug reactions. The only reason I was concerned is because I
previously had a psychotic reaction to Prednesone and spent a year on Zoloft
afterward. I know some drugs have initial side effects that diminish as you get
used to the drug. I really want to try this treatment. PA sufferers are
notorious for anxiety disorders. Hopefully this isn't a trigger reaction. Have
any of you Enbrel users had a similar experience.
Nervously Ronnie E.

It seems to me that with all the am stiffness today and the pain in my feet,
ankles and bank creeping back in, that the
"remission" was really only a weeks respite because I told God "Uncle!"!
Sometimes his sense of humor gets me mad!! At least I did do so so much in
that one week and a half with the kids and my mom visiting... saw Aida on
Broadway, ate at the Russian Tea Room, saw Jackie O exhibit at the
Metropolitan Museum of Art..it was so decadent..all that in one day!!! Shelby
came along too- she looked so lovely in her sundress and sandals, it made me
teary eyed.
I guess I am not complaining anymore...just counting the blessings that I do
have...
Michelle
God Bless you all.

Michelle,
You are really up on your drugs - I have a question........I've been on
mtx for over 15 years and I've had breast mass and calcifications that
appeared to be classic malignant but after biopsy were benign. Now 2
years later had another lump that was growing - not appearing malignant
yet but who wants to wait - had it removed and it too was benign. I
keep wondering if the mtx isn't keeping those cells at bay? Any
thoughts?
Nanc
Editors Note<From a laymans point of view, since Metho is used as
a breast cancer chemo therapy, and it slows down the growth of cancer and
non cancer cells (thus the hair loss problem sometimes) it seems that your
theory would hold some water. Why not run it by your oncologist? I wonder
how much higher a dose you would take for cancer than we can take for PA.
The highest dose for PA is 50 mg by injection once a week. With that dose it is
strongly recommended that you take an anti-emetic (no nausea) medication
half hour before and for a full 24 hours. There are at least two on the market
by prescription that work really well for chemo induced nausea- Zofran and
Kytril. Don't forget to ask about getting some folic Acid too for the other six
days of the week.

Hi Nancy. I just received my first infusion of remicade on Monday. The
cost,at least here, is $500 per vial and I was told about $160.00 for
the IV and the nurse to sit with me. The number of vials is
determined by the person's weight - 1 vial per 90 pounds. Hope this
helps. I should also note that the infusions are done in doctor's
office for me so the price for the IV might be more if done in a
hospital setting. My doctor has a room set up to do 2 people at once,
it was kind of nice (and probably cheaper). Hope today is a good one.
Lisa
<Editors Note: The FDA just last month approved a higher dose per Kg of weight
and also more frequent infusions per necessary. With the calculations given
by Lisa, it looked like I weighed 900 pounds- and I can assure you I am in the
low 200's! Michelle- group leader

In a message dated 7/25/01 2:48:58 AM Central Daylight Time,

Hello all
I've had my 4th infusion - last one being July 5. I haven't been told
how much actual drug I'm getting and didn't really think to ask. It
takes about the same about of time each time except for the 3rd one. I
had just had a breast lump removed a week and a half before and they
wouldn't put the IV in my right arm and the only vein they could get on
my left was a skinny little vein on the back of my hand.....it burned
alot during the infusion and I couldn't wear any rings for at least a
week.
Actually my post is about the cost. The first infuison and I think the
second one were both $3200 including drug, IV and clinic. I just
received my Blue Cross statement of "this is not a bill" and this one is
over $3,600....WOW
I had a rheumy visit two weeks ago and he decided to increase the amount
of remicade as it is not yet doing what he had hoped and this is along
w/my trying to reduce the prednisone. I still take mtx - 15 mg per
week.
What are others finding are the costs?
Nanc

Hi everyone,
It has been a couple of months since I posted anything but have been
very reliable about reading all of your posts in the mean time.
I wanted to share some news with everyone. Today I am starting in on
a new Psoriasis research study. At this point I don't know a whole
lot about it though. I was told however that they call it an "open
label study" & this is classified as an "active drug". The Drug will
be a weekly injection, with the study lasting 168 days. I am also
hoping to get in on a arthritis study after this one ends. I will
keep you all posted of any postive or negative results and will let
you know more about it as I am informed.
Take care & God Bless,
Shannon

I am going on my 3rd week of MTX (10mg pills) and I was wondering if
the side effects have some kind of delayed effect (when you take the
pills). I take the pills on Thurs. night after dinner and Fri.
morning I feel fatigued. By Saturday I have an itchy throat and feel
a bit spacey. It seems like Sunday I start to feel normal again. I
suppose the fatigue could be from the PA cause today I can hardly
keep my eyes open. I am at work at the moment and I keep nodding
off. I mean I am so tired that it physically hurts to keep my eyes
open. I really don't understand how I can be so tired cause I get at
least 9 hours of sleep a night. Does anyone have any suggestions
for battling fatigue?
Leslie

No more volunteers needed at this time for the market
research study on PA. If another opportunity comes up,
I will make sure you all become aware of it right away,
Thanks for the great response
MIchelle

I'm not certain what everyone is using this tar ointment for, is it
for topical skin flares or for your scalp?
When my P first flared, I was a freshman in High School and it was on
my scalp and my eyelids. I'm one of the unlucky ones, I've got a
double whammy against me~P runs on both sides of my family.
Anyhoo...after being told by my Peditrician (sp?) everything from
stop using hair styling products and make up(yeah like that advice
had a showball's chance in HELL...lol), to being told I might have a
tape worm..he pretty much came up empty handed. I did some reading
(Cosmo of all magizines!)on my own and found this new product called
T-Gel by Neutrogena. That shonuff did the trick for me. When I had
the um...."crusty" flares, T-Sal by Neutrogena did the trick. I
tried all sorts of perscription stuff, but the trusty 'ole Neutrogena
products worked best for me.
Something that's really helped my skin is the Moisture Therapy
Lotions by Avon. Well that and the trip to the tanning bed every
couple of weeks. Luckily one of the side benefits of Enbrel is that
it helps the P as well (at least it does for me).
So...(sound of pennies dropping in a jar) there's my 2 cents. :)
Laura in Indiana

You can buy sea salt in the grocery store and I've been told to put
some in water and bathe the psoriasis 6X a day to heal and soften the
skin. Guy at work uses it for his hands and feet with great results.
I haven't tried it yet since most of my p is on the scalp:-) Dovonex
makes me look like a greaseball but works if used heavily at the
beginning of the weekend.
I have been wondering about the coating of the psoriasis....
using olive oil....baby oil....ointment like dovonex....isn't that
the same as limiting oxygen to the skin? A slowing down sort of
treatment?
PatB
only one 10mg Oxycontin in a week and a half...mini-remission?

Hi. I'm new to the list.
My psoriasis is mild, thankfully. However, the PA didn't merely
attack my hands, it played pacman with the 8 carpal bones that hold
my wrists together. By the time I saw the orthopedic surgeon, I'd
gone from 8 carpal bones to 1.5 in each wrist. He said the bones
that were still there were about the consistency of toothpaste. Both
wrists are now fused, titanium popsicle sticks are held in place with
7 screws, the heads of my ulnas were chopped off and julienned up to
use as fill to replace what the PA eroded. About half my fingers are
deformed from it and I'm probably facing some joint replacement.
There are a lot of things I can't do. (Withthese mis-shapen fingers,
picking up something small from the floor is next to impossible.)
And I've really come to hate the sight of my two 6" Frankenstein
scars that start from the center of the back of each hand. But I'm
very lucky.
My husband, who should be assumed live into Heaven for being such a
saint, gives me a lot of help with simple things. I have some very
kind co-workers who will help me by picking up heavy objects or
opening containers. The best thing is that the P didn't get into my
incisions! And my surgeon was right, I'm not in pain anymore with my
hands. At least, for the most part I'm not. There are extreme
conditions under which they will hurt but it's not chronic pain
anymore.
My rheumy seems to have a mantra of 'hydrate the skin'. Am I the
only one whose P is picky? Dovonex doesn't do a thing. Certain
patches of P like ultravate ointment while others only want the
cream. And one patch of P only responded to baby oil!
Hope I didn't run on too long.
Dianne

Hi Dewi,
I'm 32 yo male. I have had severe Psoriasis since 21. Mostly on my
hands. I have found that the best consistant working ointment for me is
MG217. Its over the counter but hard to find. It is a tar product too.
It seems to work the best for me.
TO EVERONE:
The arthritis just kicked in about a year ago and its kicking my ass.
Its very painful just to brush my teeth and hair. I have no insurance
and clinics are a waist of time. I just aplied for disability last week
but have no med records. I was never diagnosed with PA but I'm sure
thats what it is. I was told when I applied that if approved I will get
basic health ins. but will that include rhuematolagists too? I also have
a lot of mental probs. I go stir crazy just sitting around all the time
there;s so much I want to do but physically can't so I'm constanly
depressed and scared to leave the house most of the time. Does ayone
else feel like this? I've bee living off my mother the past few years
and I fee like a first class heel.
So long,
Steve in Washington

I too have faced this nasty and painful debilitating issue.
I go straightway to the dermatologist who puts me on both a strong
antibiotic orally and cream. and an oral anti fungal and cream. In addition,
up to my tolerance level, he injects the lesions multiple times sometimes for
large ones I am afraid, but it does help if you can do two things: 1/ Bring
along a friend who can grasp the alternate hand or shoulder and speak to you
in a calm quieting voice so as to distract you from the inevitable
excruciating pain. 2/ Although they do have lidocaine in the shot, my doc has
come up with putting a freezing spray on with the help of his nurse who
sprays non stop as he inserts the needles all over the hands and fingers.
Lastly they apply some styptic, some bactroban prescription gel and Band-Aids
as necessary. My hands clear within one week to ten days completely with
this last ditch effort to clear my hands for when they have gotten so out of
control I no longer have any way to treat them myself at home even with
prescription meds and antibiotics/aaantifungals. The direct steroids shots
seem to do the trick, as painful as they are.
Practically speaking, if you live with the hands not functioning for any
length of time, I understand that "Dragon" is a good bet for software that
converts the voice. (voice recognition software it is called I believe).
Getting a speaker phone installed in one of your smaller rooms at home should
be not much trouble as they sell them very cheaply now, and you bring it home
and plug in right to your existing outlet.
For bedtime, I always cover my hands with the necessary prescribed creams
with a light topping of Aquaphor on top and then put on the light cotton
beauty gloves AKA pall bearers gloves. That should keep your linens clean.
Although it may turn off your partner?
I hope these suggestions help a little.
Michelle
group founder
Also go to the following sites for further help:
<A HREF="http://www.psoriasis.org/"
Our own <A HREF="http://www.wpunj.edu/pa/"
Harris

Hi- There have been questions from Joe and Iris about sulfasalazine.
It has been used for decades for colitis and other chronic problems,
and it was discovered that it sometimes works very well for arthritis
too. Nobody knows why. A good, double-blind study has been done
(Arthritis and Rheumatism, (39) 2013 (1996)) which showed significant
effectiveness for PA.
Because it is such an old drug, used for long periods for chronic
conditions, its side effects are extremely well-known, which is a big
plus. Some people are allergic to sulfa drugs. They can cause a
serious drop in white blood cell count. Blood tests are done atfirst
to check for this. If these things don't happen, there is usually no
other side effect.
I took sulfasalazine with no side effects at all for about 7 years,
and it worked rather well for me. It took more than four months
before I began to see any improvement, which agreed with what the
rheumatologist told me to expect. As I remember, the first thing to
improve was the exhaustion and mental fog, and then the joints, small
ones first, and then large ones. After six months, I was
significantly better, and after a year, I was feeling really very
good- though my knees and ankles never got down to normal size and
still hurt some, I could actually ski, which seemed like a miracle at
the time. For about the last two years I was on sulfasalazine,
several fingers swelled up again, and the drug seemed to be
gradually losing its effect. I stopped taking it when we wanted to
have a baby (it can cause temporary infertility in men). My
arthritis did not flare when I stopped the drug, and I continued to
take ibuprofen, but nothing else. We had a healthy baby boy that
year.
The next year I had a terrible flareup of arthritis, rapidly
becoming the worst of my life. Everything- toes, ankles, knees,
hips, back, fingers, wrists, elbows, shoulders, jaw were
involved again, and I was so exhausted and depressed I could barely
function. I immediately started sulfasalazine again, but after
eight months I had no useful response.
I knew that sulfasalazine was actually an old-fashioned sulfa
antibiotic combined with a salicylate. When I searched desperately
for something else to try and came upon information about antibiotic
treatment with the modern antibiotics doxycycline and minocycline, I
decided to try it, and the results have been wonderful for me. It
has been somewhat similar to sulfaxalazine- slow to start working,
and then improving over the long term in a similar way, but I'm much
better now, after two years, than I ever was on sulfasalazine. I
suspect that those who have some response to sulfasalazine might do
really well on the antibiotic protocol (AP) as I have, but poor
response to sulfasalazine would not rule out good results with the
AP, since the modern antibiotics are so much more effective. Don't
get me wrong, though- your rheumatologist, if you ask him how
sulfasalazine works, probably won't mention its antibiotic properties
at all- this is not the orthodox teaching from the high priests of
rheumatology!!
--Best regards, John

I'm to the point where I'm afraid to drive. I get so sleepy. I have to drive
550 miles round trip to see my Rheumatologist. I've reached the point were I
just don't want to go. It's scary.

Hi,
I am 50 and have had P.A. for some 6 years, having had mild Psoriasis
since being a teenager. The Arthritis all started with a pain in my
right index figure, triggered I assume by the dreaded computer mouse
click (I now use a pen type device). I changed to a device that I
clicked with my thumb and so the pain spread to my thumb. I began to
take more excercise and found the more I exercised the more the pain
appeared to spread to other joints. At my worse I could hardly hobble
down the driveway. Eventually I was diagnosed P.A and after
consultation regarding possible side effects was put on 7.5mg/week
Methotrexate. Well within 6 weeks my life was transformed and the
Psoriasis began to improve too! My Doctor was worried about a person
so (I liked this!) young being put on Methotrexate because of the
risk to the liver. However the hospital consultant's view was to hit
the disease hard in the early stages. So I can say that the last four
years on Methotrexate has been great. I've missed drinking wine of
course and fortunately I can walk to the clinic for my monthly blood
tests. It has not been problem, no other side effects encoutered. I
have also found that Spanish climate is good for my condition as is a
total reduction in stress level. Since retiring early last year I
have found that I have been able to reduce my weekly intake of
methotrextate to only 2.5mg without any noticable problems on the
arthritis side, although the Prosoriasis has flared up a bit. I can
control this with tar ointment though. I am now hoping to give up the
methotrexate completely.
So if you have not already discussed methotrexate with your Doctor, I
suggest you do, provided you can wean yourself of alcohol!
On the subject of tar ointment. In the Uk there used to be a very
nice product made by Martindale which was cream colour not black.
This appears to be discontinued and the most recent batch I had was
specially made at a lab under prescription. It is very black &
smelly! Does any one know of a more cosmetic product? Tar ointment
semms to be the only thing that will control my Psoriasis.
Dewi

Can anybody tell me what these "ridges" on your nails look like that
I've read about? I'm going to see a Rheumatologist on Tuesday.
Family Practice doc things I have PA. Have had psoriasis since the
age of 7 and I'm now 45. I have ridges in my nails but you don't
notice them that much unless you're looking at them under the light.
Mark Kelley
Littleton, CO

Hello everyone,
I was wondering if any fellow PA ers have this
problem , when walking does hip feel like it is going
to give out, also ankles stay so swollen , at times it
feels as if something is crawling on them .
Judi
=====
Be ye therefore followers of God, as dear Children:
And walk in love, as Christ also hath loved us, and hath given himself for us as
an offering and a sacrafice to God for a sweetsmelling savour. Ephesians 5: 1,2

Hello All:
I'm 46 years old. Have had acute psoriasis since I was 7 years old.
Just a few months ago I started noticing lots of stiffness
particularly in my hands and feet. Since that time I find my fingers
and toes throbbing and I've experienced some swelling. I also have a
lot of soreness in my elbows and I get aches and pains in my knees and
lower back.
I went to my family practice doc who assumed that because I have
psoriasis "the skin condition" that I probably also have psoriatic
arthritis. The pain seems to float around from joint to joint. I
sometimes have a hard time sleeping when the aches just seem to be
coming from everywhere. Right now I'm on Indomethacin and that's all.
I can't tell that it's helping much. I'm going to see a heumatoligist
for the first time next week? Any suggestions to a new person
experiencing this for the first time?
By the way, psoriatic arthritis often effects your nails. I don't
notice that my nails are pitted or inflamed. I've read, though, that
a sign of PA is that of pitted or nails with ridges. What do these
ridges look like? I have ridges all over my nails, but they are
really only noticeable if you look at them in good light.
Thanks -
Mark
Littleton, CO

Hi Michelle. I'm scheduled for my first Remicade infusion Monday.I'm
very scared because I don't know what to expect. Is it really worth
it?Do you automatically get relief? Side effects? As bad as I feel
with mtx,I can't imagine doing anything else. I'm having second
thoughts about this. What is the damage to our bodies in the long run?
I realize it is just a guessing game for the doctors but... I stopped
taking Medrol because of the weight gain and hair growing on my
face.Now what am I doing to my body if I take a medicine that makes
me grow hair where I'm not naturally growing it? I sometimes feel
like giving up and staying in bed and dealing with the pain instead
of trying to cover it up. Thanks for listening.
Lisa

beverly,
neoral is a cyclosporine, which i think is classified as a dmard.
it's a last resort for both p and a, because it can damage the liver
and it can raise your bp. i love it because it started clearing up the
ps within days of beginning, it has also helped the art. it even made
all my nails look normal again. the big thing for me is that it didn't cause
my stomach to be upset. there have been some other posts about it
within the last few days, if you want more info.
have a good week
susan in ohio

My MTX pills have always been little yellow pills. Then the got to be a
little be bigger yellow pills. I just received a new prescription and they
look the same, except for that they are a pinkish orangish color. Has
anyone else received this color? Becky

dear mtncat,
i read your post, and it just broke my heart. we have all been thru what
you are going thru. terrible pain, and the so called medical experts not
having a clue. don't you live in lexington or there abouts? there is a
member of the group who lives in cinc. that wrote me personally about
her dr. i think it is joanne? maybe she can give you her drs name,
it took me going to ohio state before i found a dr who could help me.
my mom had ra and osteo for years. i am 37 and when i was in high
school i remember her having trouble with pain. and do you know
that about 7 yrs ago, a dr actually said she didn't have arthritis! she
looked at him like he was crazy. unfortunately, the osteoporosis was
more painful for her than the arthritis.
i know how tiresome it gets going to dr after dr, but unfortunately this
is a hit or miss disease. my dermatologist is actually been better for
me than any rheumie i ever saw. he knows more about the whole disease
and even does research. he is the only one i go to now.
i know i haven't offered any solutions but please know you are in my prayers
and you have my support.
susan in ohio

Hi everyone this is Judi and I am out of town , wanted
to go and then didn't back and forth decided to go
ahead and take the plunge , have been having pain for
the whole time and dull aching and less and less
energy .ugh!
Tomorrow Water Country , I have decided that I would
go do this for my healthy friend and my self , her
because we just need to have a fun time and me cause I
am sooo tired of being tired all the time and decided
time to have some fun , so off we go in a few short
hours. Hope everyone is doing okay , and I will be
floating down the lazy river soon , or either in wave
pool only two things that I will do.
Judi
=====
Be ye therefore followers of God, as dear Children:
And walk in love, as Christ also hath loved us, and hath given himself for us as
an offering and a sacrafice to God for a sweetsmelling savour. Ephesians 5: 1,2

Hi all,
Has anyone with PA had the deformed joints in the fingers replaced with
artifical ones? I had my left and done in Dec 99 and due to have the right
hand done soon - there have been complications with the left one and I am a
bit concerned about having the right hand sorted out.
Is there anyone out there with any similar problems - I am only 30 years of
age and I ain't really looking forward to becoming the bionic woman yet, ha!
All answers are welcome - Dutson1@...
Hope to hear from anyone soon.
Thanx
Shell

That is what led to my diagnosis last August. I've had trouble with
that knee ever since.
Andy

Hey, Jenny again. I guess what I am really asking is, If the NSAIDS
aggravate the psoriasis, do you keep on taking the NSAIDS for their
anti-inflammatory properties in regards the arthritis or do you stop?
And if you stop what do you take for pain and inflammation? Hope I am
specific enough. Really need some ideas because the mobic is
definitely disturbing my skin. Thanks muchly.

Hi Jerry and Everyone,
Yes Jerry, most all anti inflammatory meds. do cause flare-ups of P.
I am told the newer Vioxx and Celebrex, do not cause this
problem in P -PA sufferers. I tried celebrex and had side effects, so
stopped it.. So I can not say if it would cause a flare-up of P.
I am from the old school here with P and PA, and for 56 years have
tried them all, short of MXT and other newer therapy that many of
the list are on.
I have had flare ups of P from meds that I needed to be admitted
to the hospital. (far too many times)
A shame that my pride tool over, and I decided I'd rather have the
pain than the flare ups.
(cause they are also painful, itchy burn etc,)
A pain pill does the trick, for me without the flare-ups.
Speaking for myself, of course.
You all have a Good day. as can be said we never can say Good
Morning, it's always Good Moaning.
Alice
Message: 6
Date: Fri, 13 Jul 2001 03:58:56 -0000
From: vgriff@...
Subject: anti-inflammatory and psoriasis
Hey all, its Jenny here. You may remember that I have been trying to
control pain and inflammation by staying away from gluten, sugar, and
dairy. Well, i have been failing miserably to stay away from these
goodies and my rheumatologist was sceptical anyway and insisting on
my taking my Mobic. So for the last 2 weeks I have been on Mobic.
However, in the meanwhile, I got a big patch of what looks to me like
psoriasis pop up on the insides of my elbows! My question is this. Do
anti-inflammatories make psoriasis worse? When I first came down with
the stuff, November last, I got psoriasis all over me. Then this
spring when i quit taking the anti-inflammaoties, the psoriasis went
back to just one hand. I sure don't want to get that stuff started up
all over me again but I do need something for pain. What does anyone
think about this? Thanks in advance.
.

Anyone ever had a ruptured Baker's cyst as a result of their psoriatic
arthritis?

I'm in the process of seeing a rhumetologist about my Psoriatic Athritis, but
now it's come out that I may also have Bipolar disorder. I was wondering if
anyone on this list happens to know about the combination of the two
disorders. Medication interactions, etc?
Kimberly

Is there anyone else on the list who is only on Celebrex and no other
antiinflammatory?
Id like to chat with you about how you are feeling on this drug.
Thanks Di

Hi everyone,
Have read that Folic acid is recommended for those who take MTX. What does
it do?
Also I am just on Celebrex and have been feeling ghastly on it. My teeth
have been chipping and legs, neck,shoulders and lower back ache. Is this
from the Celebrex or is it the PA? This disease is so confusing!
Di
Canberra. Australia.

Hello everyone,
My name is Christy, 26, military officer, best
shape of my life until Feb 2. 2001. I will never
forget the day that my left ring finger started to
tingle intensly while shooting waves to my elbow. A
week later, my middle three fingers were swollen and
unbearably painful (as you all know the pain). Three
months later, my left foot's toes, one month later, my
toes on my right foot and recently Jul 4th, unbearable
pain in my lower back. In this short time I have been
on Indocin(3 mos didn't work), Celebrex (2 days,
couldn't tolerate), Vioxx(I love it), Clinoril and
Myocin(couldn't tolerate) and now Methotrexate. I
have only been misdiagnosed for a short time (no RA,
high sedrate) and after the episode on the 4th, I was
diagnosed with spondyloarthropathy. I have an appt on
Monday. Today, I researched it on the net and it led
me to the psoriatic arthritis. The symptoms and
swelling that I have, I see that with you all on the
site. I'm not sure if i'm happy about it. To know
that people are in pain and complain a lot like me.
My swelling usually goes down two days before an
appointment and comes back the next day, it never fails.
Listening to your stories, I'm not looking foward to
being in pain for the rest of my life. But, I'm here.
I have a couple of questions:
1. Is MTX the same as methotrexate and what eases the pain if
anything?
2. If diet and exercise are the key, what is the foods and exercise?
Hopefully, I won't get a discharge over this. I think
I need somwone to talk to about my pain and symptoms.
I am falling on deaf ears with my friends. It's like,
put the horse out of her misery. I would appreciate
any response.
Christy

Hi Leslie. I also take methotrexate and have tried to take it at
different times to see what is best. Fatigue after taking it is a
given. I have found that taking it right before bed has helped a
little. I do take the injection so I get it over with all at once and
it doesn't drag on like when taking the pills. I take my shot on
Wednesday night and don't work Thursday. My family knows that I
basically have a 6 day week as I'm pretty useless on Thursdays. I
start to feel a little better in the evening Thursday. Drink plenty
of fluids on the day you take your mtx as this helps I think so it
doesn't become toxic. I also have found ginger ale right after my
shot and throughout the night helps with the sick stomach. Hope this
helps. Have a great day.
Lisa

Hi, I am doing everything I can to find information of this horrible
disease. We are not 100% sure if the doctors have diagnosed my
husband correctly yet. He only has Psorisis on his scalp and just
recently started on 2 fingernails. However, one horrible day in
December he came down with crippling back pain that in a short time
moved to one knee. The knee had swelled and needed to be drained.
He has been to physical therapy, Chiropractors, primary care dr
(dozens of times) and finally a rheumatologist. This Dr first
thought he had gout because of the fluid that was drained but
contained so little crystals, the came the diagnosis of reactive
arthritis but all blood tests turned out normal. On his last visit
to the dr. the charge slip said Psoriatic Arthritis but the dr
mentioned nothing. He has been on prednisone and voltarin for many
months. The prednisone is the only thing that even begins to take
the pain away so that he can function in everyday life. He now has
pain in his shoulders and in his wrists and hands. We are lost as to
what to do now. Of course we have managed care insurance and the
referrals are getting harder to get. Any insight on if this sound
familiar to anyone please write to me. Thank you all, Julie

Greetings all,
Well, I saw my rheumy today and he increased my dose of prednisone to
10mg a day, told me to quit taking the vioxx cause it wasn't helping,
he gave me darvocet for the pain and put me on 10mg of methotrexate
1x a week. I was wondering if it is better to take in the mtx in the
morning or at night (to lessen side effects)? Do you feel tired or
sick after taking it? I have seen many postings where people take
folic acid along with the mtx. I asked my dr. and he said that if I
get side effects he will prescribe it for me but until then that
would be just one more pill for me to take and he didn't think it was
necessary. Should I be concerned? I don't want to get mouth sores
or lose hair. Don't really like my doc too much but I guess there is
not much I can do about it...........
Leslie

dear pa family,
those of you to replied to my email message; i want to thank you very much.
i have not been able to figure out how to reply directly to each of you.
after reading your posts to me, i tried to reply but going to reply section

Dear Iris and other new members,
Many of us started off with the PA in our hands and/or feet. The plantar
fascitis sounds very familiar as does the almost phantom heel spur. Surgery
for the small spur would probably be a mistake as in most cases it will clear
up (the pain I mean) once you are on a therapeutic dose of a DMARD like
methotrexate or the like.
I highly suggest setting aside chunks of time to use the archives of our
group. You can search using a single word or phrase and it will lead you to
where in the entries this topic was discussed in the past. Asking questions
is also highly encouraged- that is why we are here-- to help each other!!
Thanks for de- lurking. We have over 700 members now, but as you can see,
less than ten percent actually participate by contributing to the e mail
conversation. We could use a few more people to pipe up out there guys!!!!
Welcome aboard again,
Michelle,
group founder

good news everyone,
i got a letter today from social security saying that they find my disability
continuing. as my kids say DUH! i didn't have to go to any doctors or
anything. they determined from the evaluation form my lawyer helped me
fill out that even though i am actually better now i am still disabled.
i would like to go back to work since all kids are in school, but don't
know how it would turn out. will cross that bridge when i come to it.
i am truly surprised that the process turned out to be so easy.
a lot easier than getting it in the first place! one less thing to worry
about.
susan in ohio

Hi Heather. From what I remember reading about side effects of mtx,
sore throat is one but we are supposed to report anything like that
to our doctor. I would rather be safe than sorry. Sounds like your
body is definitely responding to something. Just my thoughts. Wishing
all well.
Lisa

I keep smelling something like eucalyptus as in Vicks or Noxema. It
is not any thing I am using or wearing or my husband uses. Is there
a side effect from MTX that you smell strange things?
Bunky
Thanks

I always seem to get a bit of a sore throat for a couple of days about three
or four days after my injection of MTX. I've never reported it because I
don't think it's anythng. Am I wrong? What does a sore throat mean - other
than that I might be more vulnerable to viruses etc.?
It's really bugging me.
Heather

<<. I have had PA for about 5 years or more. I have the typical symptoms
that I have been reading about.
Hi everybody,
could anyone please explain the difference in symptoms between PA and RA?
Thanks in advance, Brigitte

dear pa family,
i have been suffering with plantar fasciitis and heel spurs for over two
years. have seen many different types of doctors and have had many different
types of treatments, some experimental, the only treatment not tried was
surgery. as a last resort, i saw a rheumatologist who took a blood test for
a gene marker for p.a. he felt that i have an underlying condition, p.a.,
which was causing the pf. i have been taking mobic and sulfasalazine for 6
weeks now. i have noticed a slight improvement except when there is a
weather change. then the pain returns full force. i would greatly
appreciate any advice and support that you could provide.
sincerely,
iris523@...

Hi everyone
Well I phoned my rheumatology nurse and she spoke to the consultant and he
said to stop taking the MTX for 3 weeks (cos my son has just developed a
really bad case of the chickenpox). I expect it will all be ok, my mum says
she can't remember if I did have it as a child, but since my sisters had it
when they were int heir teens, then most likely I did. My poor son is
suffering, it is all over him, he has hardly any clear skin, he had an awful
night last night, crying and not able to sleep. There's not a lot you can do
for cpox though, my gp has prescribed an anithistimine for him and suggested
he has a bath with bicarbonated soda in it. We are due to go on a 2 week
holiday in 3 week, so I am praying my 3 year old doesn't get it, we will
have to cancel the hol then (but we get 80% of our money back). I hate to
see either of them sick, you feel so helpless sometimes. You tend to think
of chickenpox as nothing much, then again some do just get a mild dose of
it. I remember getting german measles when I was little. Chickenpox is going
round the school, and my son is very upset also that he will miss the last 2
weeks of term (the he is off for 6 week summer sch hols), I wish I could
take it away for him (the cpox).
Thanks for listening
Cathy (UK)

Dear All
I thought I read somewhere about if you are taking MTX and have never had
chickenpox then come into contact with someone who has cpox, then this is
NOT good??? I might be getting it mixed up with something else?? Anyone
heard of this??
My son has just got chickenpox, but as far as my mum can remember, I had it
when I was little (I hope!)
Cathy (Wirral UK)

Hi Ronnie,
You have my immediate understanding. I am a guitarist and havent played now
for a year. Was diagnosed 7 yrs ago. I tried for years to kid myself it would
be okay to play on thru the pain threshold - but I only ended up doing more
damage to my wrists and fingers.
I have now resorted to the digital scene and work with youth - I've just been
offered a job to help young people make recordings using digital sound
recording equipment.
Sorry I cant give much advise or offer any comfort except that I know how
distressing and frustrating and heartrenching it is not to be able to make
music on a real guitar.
Nigel :o) (uk)

I HAVE BEEN TAKING REMICADE FOR MY TREATMENT OS PA. MY RHEUMATOLOGIST
HAS HAD ME ON IT FOR 1 1/2 YEARS. I AM 90% CLEAR AND AM NOT FLARING
UP. THIS HAS BEEN THE CLEAREST I HAVE BE IN 7 YRS.WOULD LIKE TO TALK
TO OTHERS WHO HAVE THIS PA

In a message dated 7/5/01 2:58:32 AM Central Daylight Time,

CAn anyone explain the difference between Thyroid sysptoms and PA? My
sister insists she has thyroid problem while I insist that it is PA
but less severe than what I have been experiencing. She gives me a
list of symptoms and I say "so what's the difference?". The aches and
pains....the tiredness...swollen digits...joints that pop...etc
She has psoriasis...so do I...as well as at least a couple brothers
out of eight children.
Her thyroid test is borderline normal but she gets relief from the
thyroid medicine so firmly believes it has to be thyroid. There are
so many things that can give us relief but it doesn't stop the
progressioin of the joint damage. ie. progesterone cream which
coincidentaly has flaxseed and/or grapeseed in it. or EPO etc.
Where I use Dovonex she insists that anti-fungal ointment clears her
psoriasis. An older sister prescribes herself steroids at the first
start of any excema (sp?) and denies having psoriasis.
I've had wonderful results with Enbrel and trying to reduce stress in
my life. I'm very close to being off the Oxycontin after having to
take it for a couple years. Go Enbrel Go:-)
What is the key or clue to the thyroid versus Pa discusssion? Any
ideas?
PatB
for personal reply write to pbias@... since I haven't used
the Webtv in awhile:) can't play pinochle with Webtv:-)

Dear fellow pa'ers,
I have never been in a newsgroup before, but upon searching the web,
I found y'all!
It is great to know there are others who are battling this disease. I
was 22 when the doctors finally figured out what was going on. I am
29 now and my pa is somewhat better. Had to quit teaching and get a
desk job due to the pain in the feet, but I am doing a lot better.
Hope to learn more from this newsgroup as the days go on.
Just a word of warning for all you ladies out there who think they
might start a family some day - STAY OFF OF THE METHOTREXATE. Nasty
stuff! My doctor didn't tell me that one of the side effects
(although small) can be sterility. I took it for a year. Also can
cause liver damage. I mention it just in case I could help one person.
later!
Carol

Hello all,
I am scheduled to get my 4th remicade infusion tomorrow afternoon.
I came down w/a sinusitis - it started a few days ago and really locked in last
night and today I'm really feeling lousy. As I am already on steroids, mtx, 24
hour Claritin D, folic acid & prevacid I'm never sure about taking anything
else. I do have some Flonaise nasal spray which I used earlier and am able to
use one more time before going to bed. Rheumy gave this to me in Jan when I had
similar problem.
My question is - will they still give me my infusion?
Nanc

I found that Skin Cap was quite effective for my psoriasis on legs,
thighs and arms, but it was taken off the market. Not there is a new
medication, Blue Cap, which I've tried recently and it works as well
as Skin Cap for me. There are a number of souces if you search with
Google.
Good luck,
Jim

I am new to the PA group and just happened upon it while surfing the
web. I was diagnosed with PA last year after having hand surgery for
torn ligaments. I am a professional pianist/organist and am noticing
that every day my playing gets more difficult, painful and less
accurate. Any suggestions on dealing with this would be
appreciated. I am currently taking Vioxx, and was on Azulfidine and
Methotrexate for almost a year. However, I found they weren't
helping at all and left me feeling quite ill most of the time, so I
stopped the medication. I still take the vioxx for the pain, but it
doesn't seem to effect the swelling in the joints which is causing my
fingers to turn downward. I do find that if I go for a day or so
without practicing the keyboard that I am more stiff and painful. Am
I helping or hurting the situation?
Mark

/Dear friends,
Enbrel did not work for me, and in addiiton, within two months I put on 20
lbs. It was like being on a high dose of Predisone- a nono for me! Thanks
for your thoughtful suggestions though. I am still waiting for Interleukin
to arrive in December some time with any luck!
Michelle
The PsoriaticArthritis mailing list informational support group I founded
three years ago is doing very well now with over 650 members from all over

Hello, My name is Ronnie and am new to this group. I'm a 46 year old
recording artist/ guitarist affected 2 years ago by PA in my hands. I was first
on Sulfsalazine. Then on MTX. My hands kept getting worse, losing joints, until
last November I was on state disability. At that point I tried Minocine. The
antibiotic made a big difference in pain and with additional cortisone
injections to the affected joints the progression of the disease seemed to slow
but not reverse. I was able to resume my day job in electronics but could not
play my instruments. I could play them but every time I do I either loose
another joint or my fingernails and my hands are frustratingly stiff and hurt
like hell even with viox. I have just been approved for Enbrel therapy. I
spoke to the Reps at my RD's office and they seemed very positive even though
there is little data on the digital form of PA. If someone would have told me 2
years ago that I would suffer and be crippled this much at this time I would not
have believed them. I am very hopeful for Enbrel. Any experience or advise,
especially from those with hand involvement, would be welcome. RGDS Ronnie E.

Hello, friends on the list.
I am Anders from Sweden, 37 years old. I really appreciate this list,
this is my first private mail. Since three years back I have had the
diagnosis PA. Until April this year, when me and my family moved back
home from Asia, it has been very mild; a couple of swollen finger
joints coming and going and occasional scalp and face psoriasis
(light). Clorochine and a few shots of cortison in the fingers has
basically been taking care of it, not too bad.
The rapid change of climate a few months ago gave me my first major
flare. For the first time very sore feet, very swollen fingers - plus
- a flare of psoriasis. So much pain and fatigue. Having a second
baby in the midst of this was not easy.
For 10 weeks now I have been eating MTX; 5 weeks with 10 mg/week, 5
weeks with 15 mg/week. I have also tried a round of Prednisolone (as
well as a bunch of pills from the health store). Recently my
reumathologist also gave me Vioxx...
The fatigue is somewhat better, the rashes are gone. So I guess my
treatment must have helped to some extent. BUT - the pain in my feet
and fingers is still there, now stronger than ever. I am really
fighting to keep up my work (news reporter) and I have a difficult
time falling asleep at night beacuse of the ache.
My doctor keeps on telling me - "keep on eating your pills - the pain
will soon fade away". I dont believe it until I have seen it, am
getting more desperate day by day. Futhermore, my reumy is on holiday
until August...
What would you do in a situation like this? Is there something a
doctor can do for me? More MTX? Painkillers? Enbrel or Arava?
Homeopathy? Other treatments? Anything? Thankful in advance for any
kind of suggestions.

Hey, Jenny here. I have been struggling since last November with this
PA and especially this last winter having a very painful, stiff time
of it. At one point couldn't sleep for two months because of
peripheral neuropathy in hands. Have tried every NSAId in the book
and am on my second Rheumatologist. Last NSAId I tried was Mobic and
3 days into taking it, I lost a good deal of hearing in my right ear.
Stopped that and decided to try the no sweets, wheat, dairy diet. I
have been doing this for over a week and can feel 300% less pain and
stiffness. This morning I got out of bed and did a deep knee bend! I
am ecstatic. Even the psoriasis on my hand which was cracked and
bleeding last week is completely healed up!
However, when I saw my Rheumy yesterday, and asked her what she
thought about my improvement in symptems, she told me that i was
grasping at straws and that no one had ever been healed by a diet.
She wants me to continue to use the Mobic and to go on disease
modifying drug in one month. I was pretty much speechless. It felt
like she just couldn't accept that I could get better without her
help. Well, anyway, now I am trying to decide whether to take the
Mobic and DMARDs or what. What do you guys think? And also since I
have been staying off sweets, wheat, and dairy, I just can't seem to
sleep at night. Now of course I didn't sleep so great before becuase
of pain, but this seems to be a restlessness which I have interpreted
as withdrawals from the sweet goodies. I really am feeling deprived.
Has anyone else who has tried this kind of regimen had trouble with
sleep. Thanks in advance and have a great day. jenny

Hi Everyone,
According to the National Psoriasis Foundation (NPF), the following locations
within the USA have psoriasis support groups.
For more specific information, call NPF at (800) 723-9166.
CALIFORNIA-Orange County; FLORIDA-Central Florida (Orlando), South Florida (Boca
Raton), Southwest Florida (Cape Coral);
IDAHO-Buhl; ILLINOIS-Berwyn; KANSAS-Wichita; LOUISIANA-Slidell; MAINE-Belfast;
MASSACHUSETTS-Beverly; MINNESOTA-
Roseville; NEW YORK-Kingston, Long Island (Plainview), New York City (2 groups);
NORTH CAROLINA-East Bend, Greensboro;
TENNESSEE-Unionville; TEXAS-Dallas/Ft. Worth, Williamson County;
WISCONSIN-Milwaukee.
Sincerely,
Bill in DC

Remicade IV is given over a period of hours in the doctors office or
hospital. You must stay on a low dose (7.5 mg.) of Metho while on Remicade,
in order to keep your body from making antibodies to the mouse protein that
is the base of Remicade. The Metho is taken by mouth once a week only. The
treatment schedule for Remicade is more frequent in the beginning and then
every 4-8 weeks after that. It is not painful going in. The only hassle is
getting the IV line going! When I took it my first dose of 300 mg took four
hours, so I had to pack lunch and bring a few magazines to read and a big
bottle of water to drink. It is no sweat.
It does take some time for it to work. Everyone is different-some say 5-7
days some say two weeks-for it to work. You will see how it works for you.
It may not work for you for the first one or two doses, but should start to
work after that. Good Luck,
I hope it works for you. I am sure you know how expensive it is, so thank
goodness for insurance too!!
Michelle
The PsoriaticArthritis mailing list informational support group I founded
three years ago is doing very well now with over 700 members from all over

Thanks for the advice Susan! The main problem that I have if they
decide to review me is my lawyer does not "do" reviews. That means that
I would have to start all over with a new lawyer. My lawyer also could
not refer anyone as she said she did not know of any attorneys here in
Texas that help with review. I am trying not to think to much about it
until I get some communication from SS!
Valerie
hi,
i am in review right now. i got a letter a few months ago with a
questionaire
to fill out regarding my health. i immediately called my lawyer and
made
an appointment. she had me answer the questions on a separate paper
and then i went over them with her clerk. she filled it out, and brought
out things i hadn't thought to put down. it was very helpful to have her
ask questions. then the lawyer came in and we talked. she saidd that
ss would review it and it could take months and months. nothing might
happen,
and benefits would continue until the next review. or they might decide
to
have a dr examine me again and go thru the process. if that happens she
becomes involved and we fight them. i don't do anything without her
approval.
i think the letter came in march and i still haven't heard anything. she
said
if they do go against me, they don't just cut off the benefits, you have
time
to appeal. my advise is don't get worked up over it, and don't do
anything
without your lawyer. my "mantra" since i have gotten sick, is not to
worry
about things you don't have any control over, it does you no good.
if i could cross my fingers, i would, let me know how it goes
susan in ohio

I have heard several anecdotal stories that grapeseed extract and milk
thistle both help with the hair loss from drugs.illness. Perhaps the
nutritionalist at your local health food store could direct you to a good
brand and dosing that would be worth it to try.
Michelle
The PsoriaticArthritis mailing list informational support group I founded
three years ago is doing very well now with over 650 members from all over

Dear Friends,
It saddens me to hear of all the suffering that many of us are going through
presently.
I too am not responding to my treatment and we have abandoned Remicade. Now
I am waiting for the newer drug coming out at the end of the year that is
based on Interleukin - 1. It will be an IV like Remicade, but will not have
the weight gain side effect and is completely human protein (not mouse like
Remicade) so we should not make antibody to it and lose effectiveness over
time like happens with Remicade!
If anyone has heard more about this drug coming, please share with the group,
it sounds so promising!
For those with stomach pain, I can certainly relate. I had to give up all
NSAIDS and go with narcotic pain relievers and Prilosec to protect the
stomach. I found the best combo for me to be the long acting MSContin (8-12
hours). It's dose starts at a low 15 mg and goes on up. there is the issue of
functioning on a narcotic- especially driving. I myself do not drive at all
while I am taking it. I will sometimes wake up in pain in the am, but run
out for two hours to do a necessary errand and then come home and dose myself
for the day. It seems the only way to deal with the pain and still function
outside the home when necessary. Getting a ride from friends/family and
neighbors is difficult at best, since it is a chronic need!
I have especially felt guilty with my 14 year old, 12 and 11 year old stuck
here in the country with no way to get out of the neighborhood all summer-
but they can have friends over, so they will have to make do!
It does seem that there is a large subset of pregnancy related issues
discussed int he group and I think that is fine. but if you all want to start

I am currently waiting for approval for Remicade. While I wait, can
anyone tell me what to expect? Instant relief? Do we still stay on
the mtx while on this also? Side effects? And why does it have to be
infused? Long term effects?
Thanks!
Lisa

the nutrional supplement Biotin,and hair care products from Nexxus helped my
hair thicken up. been on Mtx for 6 years this July.
Rememer any day you wake up and you have hair,it's a GOOD HAIR DAY! :-)

"Has this happened to anyone else - at any dose? "
I have been experiencing hair loss lately too. I'm on 20 mg. a week of MTX.
I talked to my rheumy about it and he wasn't very specific but he said it
would stop. My hairdresser pointed out that at least new hair is still
growing in, but it doesn't seem like it's coming in fast enough!
I've been on the MTX since September of 2000 and the hair didn't seem to
start falling out till about a month ago. I hope it's not my imagination,
but I think the loss might be slowing a bit.
Amy in Oregon

I was finally awarded SSD in July 1998 after fighting the system
since April 1994. I had to get an attorney after initially being
turned down by SS. We filed an appeal, and eventually after many
years and lots of stress, got a favorable decision from the
Administrative Law Judge in 1998. It is coming up to the date that
SS says they review your case-every three years. I was curious if
anyone here has been through this process? Is it as stressful and
involved as the original finding? I really cannot afford to give up
these benefits. I am wondering if I should be starting now getting
things in order, and if it is a definite that there will be a review.
I would appreciate any insight!
Thanks,
Valerie

First I would like to say thank you to all the friends who have
given much encouragement though this web site. Could
someone please help me I am a man who has had psoriasis
from about seven years old, I am now 49. At various times most
parts of my body has been affected. Of late this has been much
improved except when under a great deal of stress. However it
has been replaced by a great deal of pain in my joints especially
in my fingers and toes, also most of my other joints including my
rib cage. I have had great trouble in convincing the doctors that
there is anything the matter, as there is little or no outward sings,
such as swelling of the joints etc. this is in spite of the fact that
one of the leading dermatologists said some time ago that I
would have trouble with my joints as indicated my my finger nails
being almost obliterated by psoriasis. I am now finding it most
difficult to go about my daily routine. I have been unable to work
this past few year due to depression and looking after my mother
who has sine passed away.

Usually I just post here alot and I dont really talk about if i'm improving
or getting worse... But I just want you guys to know for the 4 years that
I've had psoriatic arthritis... That eliminating sugar and carbohydrates
helps ALOT.... For me atleast..... Before I eliminated them , I had
psoriasis everywhere and arthritis everywhere (practically) ... I had the
pits on the nails , Psoriasis on the arms , legs , elbows , knees, eyes,
ears , back , you name it... And the arthritis was in the knees, lower back
, shoulders , hips , fingers ....... Now my arthritis is only in my
shoulders and nowhere else.... And the psoriasis is only minor....Mostly on
my knees and elbows... (it seems like those are the hardest areas to get
arid of P)
When i first had PA..... I was put on sulindac... That worked for awhile for
me... But then the pain and Psoriasis got worse.... So I was put on MTX
(methotrexate) for like 9 months at 17.5mg's a week..... The P cleared
totally and the arthritis was much better.... I stopped methotrexate last
august..... And I totally eliminated sugars and carbs about a month
later.... So from last september to now I feel just as good as when i
stopped MTX..... I noticed that i felt so much worse when i ate alot of
sugars and carbs.... Its a very hard thing to do.....But it pays off in the
end when you feel the difference...
Also, I just read this months issue of the psoriasis newsletter... And it
talks about superantigens and the immune system.... It also mentions the
strong relationship between psoraisis/psoriatic arthritis and strept throat
infections.. And I used to have them all of the time.... I developed P
immediately after my last strept infection.... And that was 4 1/2 years
ago.....Thats what makes it seem even more weird.... That my strept throat
infections have stopped as soon as I developed P and PA..... So this has to
be some kind of bacteria, antigen , or whatever that is in our body that
needs to be eliminated... Hopefully soon we could find the right type of
anti-biotic...
mike......

It appears that I may have sent yesterday's note out in error. Sorry about
that, please disregard. The following article indicates that it is more
than likely a hoax. Becky
http://www.stiller.com/aspart.htm

Hi Sinead. What you described with your ankles, sounds exactly like
mine. I had both ankles injected for the swelling but am still having
problems. There seems to be just right spot to put them and as soon
as I move, it hurts. My husband is always telling me to get off my
feet but sometimes it hurts less to have weight on them. Thanks for
your input so I don't feel nuts and I totally relate to you. How long
can we go on with them hurting and swollen? Is this a permanent thing?
Lisa

Hello, everyone. I'm Michele Kerby, Bill's wife. He's in a lot of pain right
now so he asked me to write this letter for him. He's really grateful to
everyone who replied to his introduction. We got some really good suggestions
which we're going to try as soon as our tight finances permit. Thanks from me
too. You're a great group of people!
Now for our present problem. Bill hasn't been taking his pain medication
(propoxy) for the past day or so. In order for it to work it has to build up in
his system, but then he gets considerable stomach pain and nausea. To a greater
or lesser extent this has been a problem with every pain medication he's tried.
Having an ulcer doesn't help. Does anyone know of some medication, perhaps
something new, that wouldn't play havoc with his stomach? Thanks so much for
any help.
Wishing everyone a pain-free day,
Michele Kerby

No, there isn't. Registration is free and then your computer keeps a
"cookie" so that you don't have to sign in every time after that.
Occassionally you may have to re-sign in. Also if you are on a different
computer, you have to re-sign in.
I've been registered with the NY Times online almost since its beginning,
with no problems.
Nancy A. Carter
ncarter@...
New York, NY
website?
Thanks,
Marcie
Nancy A. Carter
ncarter@...
New York, NY

hi all,
i have requested before that when you are replying to a previous post,
please don't repeat that whole post. it is such a clutter, i get the digest
version and it is such a waste to have all the extra. sometimes it is hard
to tell where the old message ends and the new one starts. i have missed
some post because i skimmed thru too fast.
when it comes to doing house work when you feel like crap, i have a few
suggestions. you already are lucky to have your kids help, i don't know
what i'd do without mine. second, take time to get organized, look around
the house and eliminate clutter. it's nice to have knick knacks, but they
collect dust. call salvation army to pick up any clothes you and the kids
and hubby don't wear, be honest too. same with shoes, high heels are
pretty, but i'll never wear them again. use your crock pot, you can do
a whole meal in one pot, it cooks all day and clean up is a breeze. mine
can go straight to the fridge. if necessary, use plastic plates,etc.
laundry is about the only thing i haven't been able to simplify or make
go away! my older boys are learning to do it. a tip for the bathroom is
the new disposable wipes for the bathroom. they are great for in between
cleaning. finally, don't sweat it, i've said before no one will ever be able to
eat off my floors, but who'd want to anyway!
sorry this is so long
susan in ohio

Bill,
It took me 4 1/2 years before I got Social Security. I got a lawyer
that deals only with Social Security Law. I just picked one out of the
phone book cause I didn't know anyone that had used that type of lawyer.
I lucked out and on my 4th try in front of a judge, I was awarded SSDI.
Payment for the lawyer is 25% of your settlement but no more than $4000.
I had to pay $4000 because of the long time it took and the amount that
built up waiting. But I got a nice back pay to help pay off bills
accumulated waiting for my settlement. I couldn't work and was living
on my husband's salary and my disability retirement of $800 at the time.
$1100 less than my bring home paycheck. A real eye opener.
It was a long hard road but we came through it. What is really nice now
is that my husband's medical insurance is primary and you get medicare
after so many months (can't remember it has been so long). So all my
medical is paid for now.
Good luck and don't give up.
Angera

Hi all,
I just started MTX for the first time last week. Until today the only side
effect I noticed was periods of extreme fatigue. That seems to have
subsided a bit now, but I have another injection this Friday.
Tonight was awful. I usually let my roots grow out a bit between colourings
because I don't want to irritate the psoriasis. But since I had a rough
time in the last few days I decided to indulge myself. What's left of my
hair looks great. I couldn't believe it when it was falling out in clumps.
The shower drain was actually clogged because there was so much. I'm only
on Methotrexate 7.5 mg. once a week, so I didn't think that would be enough
to cause hair loss. Guess I was wrong. It was tempted to give in and feel
sorry for myself - and I guess I will have moments of that for the next few
days, but if worse comes to worse I buy a wig. That's life I guess.
Has this happened to anyone else - at any dose?
Heather

An interesting article from yesterday's New York Times concerning
Vioxx and Celebrex--
Newest Pain Killers Deserve a Closer Look
http://www.nytimes.com/2001/06/12/health/12BROD.html
Something to be aware of.
Andrea

The last bit of my message yesterday was deleted by mistake. Toradol,
although very effective for me and very strong turns out to now have a
limitation of two weeks of continual use on it due to kidney/liver problems
in those who take it for longer periods of time. It and most other NSAIDS
all carry risk of stomach irritation...ulcers etc..., so they should always
be taken with food, and in some cases the doctor will prescribe another
medication to ameliorate this side effect- such as prilosec.
Michelle

Hello all. I've been "lurking" on the list for a while but decided to
step up to the plate and participate. I was diagnosed last summer
(July to be exact) and at that point only had psorisis on my scalp but
was literally crawling up stairs and walking with a cain. In the
beginning I felt it had come on very quickly (mostly my knees and
ankles)but if I look back, I know symptoms were building over the past
several years. So... after six months of pain, and tears and tolmetin
sodium, tylenol and methlytrexate my Rhematologist prescribed
Enbrel... just as they were making it so damn difficult to get and
before my insurance decided they'd pay for it. Because I missed the
"window" for Enbrel, we went with Remicade infusions. In short, I
felt like I had been blessed with a miracle. The very next day I felt
great, dropped the cane and after a few weeks started exercising
again. I still have ankle pain if I stand or walk quite a bit in a
day, and in the last two days I've noticed my right knee is swollen,
but all in all, I feel good. Not great but good.
At this point I've noticed that humidity and barometric pressure
swings seem to bring on pain. Is this normal? And it also seems that
I'm feeling more pain in the 7th and 8th week, just prior to my
Remicade infusions. (Note... the Remicade also stopped my scalp
psorisis.) Do these things seem normal? As I've read your postings
I've counted my blessings that I've been able to keep working, keep up
with my five and seven year olds etc. It's not easy, but I just do
what I can do.
Sorry for the epistle... I just wanted to introduce myself and ask if
others had tried Remicade, experienced any side effects etc.

Hi all,
Just wanted to share some info from my visit to the rheumatologist last week
(I go to the Robert C Brigham Arthritis Center at Brigham and Women's Hosp
in Boston). I have had P for 5 or 6 years and PA for about a month. My P
goes away completely with a gluten-free diet. The rheumy said that I have a
rare form of P/PA and it's actually a gluten-sensitive neuropathy. He said
he doesn't think the PA will go away completely on a gluten-free diet. But,
it will probably be much better controlled.
When I reported that I had the Coxsackie virus shortly before developing P,
he seemed very intrigued. Have others had the Coxsackie virus, and if so,
was it close to the time you developed P or PA? I'm wondering if there is a
connection. June

Hi all,
I am interested in any information that you may have or have
discovered regarding PA and pregnancy. I know that PA effects us all
differently and that some women have found pregnancy to help relieve
the symptoms whereas others find the symptoms to worsen with
pregnancy.
I have also heard that women w/ PA have trouble getting pregnant, has
anyone else heard this?
I know that all arthritis medicine is off limmits during pregnancy
and I just don't know what to expect. I went off Vioxx for a few
days and was surprised to realize how much it was helping to reduce
swelling and pain. Within 12 hours my fingers began to swell and
with in 24 hours I couldn't use some fingers, the overall use of my
hands was very limitting.
Any thoughts, ideas, advice or personal experiences are welcome!
Kate

I was very amazed when i started taking these oils for my psoriasis to find
out that they reduced my pain aswell !!! Then i looked up each oil on the
internet and found out that most of them are used for arthritis... I
honestly have to tell you that i feel great now when i wake up... No morning
stiffness or pain..... I felt like a miracle has happened and then i had to
think for a second of why i felt so good...... The oils that i am taking
are -
flaxseed oil 1250mg's 2 capsules in the morning and 2 at night
evening primrose oil 1300 mg's 1 in the morning and 1 at night
borage oil 1300mg's 1 in the morning and 1 at night
and omega 3 (fish oil) 700mg's 1 in the morning and 1 at night
It hasnt eliminated 100% of the pain.... But it has eliminated alot of
it...... I would like to know what other supplements people use for their
arthritis.... And does anybody know if there has been any new drugs approved
lately for our PA?
take-care
mike

My doctor at Columbia tells me that it is now the concensus among all the
top docs on the Enbrel advisory board (which he is a member of) that you
should inject at a
90 degree angle- in other words IM not sub-Q. Incidence of site reactions
and rashes is much higher when one does the shallow injection.
Michelle
The PsoriaticArthritis mailing list informational support group I founded
three years ago is doing very well now with over 700 members from all over

Hi group,
Been a while since I posted but the last issue contained a few things
that I felt the need to comment on:
Linda, yes, the pain associated with breathing will be eliminated by the
laminectomy (cutting of the spinal nerves) REGARDLESS OF THE CAUSE! But
it reduces ALL sensation, not just the pain. No nerves, no pain, but it
still doesn't mean the cause was the spine. Follow your rheumy's advice
and GET A SECOND OPINION (and then a third). If you still elect to go
through with the surgery, ask the surgeon in what other areas you might
also lose feeling. Having numb ribs or chest can be annoying AND IT'S
NON-REVERSIBLE!
Tracy, my MTX mouth sores stopped when my rheumy had me double my dose of
Folic Acid. When I've had severe ulcers, I break open a vitamin E tablet
and spread it on the ulcer. It helps. I'd still ask your rheumy what
the maximum dose of Folic Acid is that you should take before you
increase the dose.
Finally, Michelle, I have to, respectively, disagree that NSAID's do not
keep arthritic changes from worsening and are only good for pain relief
and swelling. You are correct, DMARD's are better at damage control but
by reducing inflammation, NSAID's do slow future damage. That's why
Tylenol isn't recommended except for pain relief. If you can't tolerate
DMARD's, NSAID's are still better than nothing.
So much for my two (three?) cents.
Barry
This e-mail created with 100% recycled electrons

I see my doc next week but can anyone give me ideas on how to get
the swelling to go down in my finger. I keep bending it to keep
the mobility. I am afraid it will fuse like my thumb did.
Also, my digestive disorder doc wants to perform a liver biopsy,
can anyone give me some pointers as to what to expect.
Thanks a million and always in the background.
Michele Kirby

Linda,
I was on Plaquinal and not only can it cause cataracts, but it can cause
Glaucoma. I see an Opthomologist every 6 months because the Plaquinal
did cause me to have Stage 1 Glaucoma. Got off that really quick. I am
also on Prednisone (by injection, once a month) and that also
contributes to the Glaucoma. It is just so frustrating that one med
helps you for one thing and then you wind up being treated at another
specialist for something else due to the medication.
Angera

Jayne,
I agree with Sinead. I have tried every NSAID that there is on the
market and they work from 6 months to 2 years then have to tell Rheumy
it is just not doing the trick. I got tired of changing and decided to
try something on my own (but did le