For those who have Psoriatic Arthritis

Thank you Diane for the advice regarding the cream, Exorex, you suggest. I
have one problem with that. I live in The Netherlands so need to be able to
get hold of a list of the ingrediants to then give my pharmicist or doctor.
I think I should tell you something about myself but for those from ASA you
already know me.
I am 48, have RA,OA,PA, DJD in C5.6.&7, and two of the lumbar vertebrae ,AS,
Asthma,Hiatal Hernia, Hypertension, Psoriasis, Quinkes Oedema, and a SEVERE
intolerance to any form of salycilates.
I receive slow release pain killing injection inbetween C5.6 &7 every few
months, have arm splints, walking stick, and a few more modifications to
help me get about.
At age 30 I was just tying my shoelaces up and my back "gave" and that was
the start of the hundreds of tests, hospital visits, scans, dyes, injections
etc, and after ONLY 17 years was finally diagnosed with the above, well not
quite true, some of them were discovered along the way then the diagnosis
was contradicted then reaffirmed etc!
Due to the allergy, I have been unable to take the usual NSAID's and DMARD's
but am now into my 5th month of Gold , Ridaura, and touch wood have had no
adverse reactions apart from the "runs" at first. Every so often the HH
plays up and then I have to endure 8 weeks of Losec 40, for the first 4
weeks reducing to Losec 20 for the final 4 weeks and then just keep Zantac
to hand in cases of mild? heartburn.
I have Claratin each day for the allergy but Prednison is part of my life in
that I have to carry it with me at all times" just in case" the allergy
kicks in, and take 25mgs in one go and hope that it is sufficient to prevent
me from going into anaphylactic shock, otherwise I end up on life support
for a few days. I also have to take 9x10ml or 1800mgs per day of Nalcrom to
help with averting an attack, all due to a common natural compound found in
virtually all foodstuffs but in varying degrees. As an example of the
intolerance, 15mgs of an aspirin is sufficient to put me in hospital. A
normal dosage is around 250-500mgs!
I get so angry when I am told I have "sero neg" RA and PA and Psoriasis, now
just what do they mean by that. I am sat in what seems to be a snow storm at
times but it is "only" sero neg, well if that is the case then the negative
bit means in my book, NONE yet here I am with ski slopes around me, and
scabs etc and the itch but its 'only" sero neg. Does anyone know how it
becomes positive, because I for one would hate to think I am imagining all
the pustules on my hands and feet, and the scaley scabs on my forearm and
calf, and the flaking skin on my arms, legs, scalp,ears and other parts of
my body. I feel like a leper and dread having to meet others who look at my
hands and see the mess they are in. I wear gloves when I go out to avoid
this situation. The bone deformorities are more than enough but no, I like
to have a good share of the cake!
You will gather I am not a "happy chappy" about all of this at the present
time, and it has brought me so low that i can now understand why a young
friend of my Mothers actually commited suicide some years ago because of the
severity of his psoriasis. No, I am not thinking of that but I do get
extremely low through it all.
Yesterday saw me tottering round the house with a plastic bag on my foot,
encasing the liberal application of cream on it, I hoped it would help rid
the scales and loosen the tightness of the skin, which it did do for a few
hours then when i took the bag off, put my cotton socks back on, looked a
few hours later, guess what, it was back again! ( Almost broke my blasted
neck skidding across the floors like Torville and Dean!!)
What direction now...... well, the only way has to be up, I have more than
the "three allocations" and I don't want any more thanks, I have just got to
find that ladder and start climbing somehow. I may not contribute much to
the group, but rest assured i do read and digest, I am still on the learning
about process, so am unable to offer anyone advice. I am the one needing it
at the moment.
Thanks for your time and sorry if I have ranted on too long, but I had to
get this frustration out of my system.
Regards ConnieD

hi all,
i am just wondering about the onset of everyones PA. My own onset the doctors
say was caused by a virus. I was healthy one day the next I could not get out
of bed. The PA has migrated from joint to joint ever since. A few joints it
has taken up residence in, one knee, both wrists are fused, a couple of
fingers and now an elbow.
Prior to the onset of my PA i did have a very stressful event in the previous
3 months.
i would like to know how this disease has set in with others.
thank you
mark

Rusty,
Please expand on what you wrote to the PA list. What Supplements? How
long have you been at 60mg? I started getting queasy at 30mg and cut
back to 25mg so am interested. I want to stay at work but also want to
get better. Do you take what exactly in order to take a higher dose of
meth ? I need the meth to get better IMO but can't tolerate the higher
dose unless I'm missing something? Should I be taking anti-nausea
medication? I don't take anything for my stomach at this point.
Curious,
Pat B
PBias@...

Hi,
Does anyone that still get Aunt Flo, seem to notice its lighter?? Is this
from the mtx?? just curious, I usually have a very heavy period, but not this
time, barely anything a not even 4days
Thanks,
Randi
PS: Im starting the mtx pills next week, my doc gave me a script for 20,
thats a months worth to see if they will be ok for me.

Whenever I get stressed the pain gets worse. The not knowing of what
will happen sometimes sets me off stressing out and the pain levels
shoot up.
Anyway, I was talking (posting) tonight and the subject of pregnancy and
remission for women came up. Many women say that they go into remission
during pregnancy. I personnally plan on my kids having babies and not
me. What I have experieced though is a "good" day once a month. For some
unknown reason I feel good one day a month. It has nothing to do with
the full moon. I think it as something to do with the womans monthly
cycle. Has any other woman on this list experienced a "good" day that
seems to happen one day out of a month and can't explain why it
happens, but enjoys that day of course. I am not talking about payday
for those of you that get pain once a month.
Curious,
Pat B
There is a link posted at the nooduitgang art. board that goes to a
study on RA and pregnancy.

Does anyone know why my cheeks might be red?? Meds I am on: 200mg of clinirol
2x a day, folic acid 3g a day, methotrexate, 12.5 mg a week, zoloft 50mg a
day, ultram 50mg when I feel pain.
Thanks,
Randi

I would like to know who has tried sulfasalazine and if it helped you.
Thanks,
Dwanna

Ok, I know this seems weird, but I want to get people's opinion of my hand,
and how bad they think it looks. Thanks, Randi

Hello to all!
I'm new to this site and I like what I see. Finally, a place to go for those who
have PA!
I have visited other sites for RA but I think we have problems which are, shall
I say different!
Background-I have had PA for almost 2 years.Just a touch of Psoriasis in my
scalp (10 yrs). The swelling problem started in my middle toe (right foot)
Thought I had broke it at first, when the pain went away and moved to the same
toe on my left foot I knew I had a problem! I have tried all the NSAID's with
little improvement. I now have swelling in two fingers on opposite hands but my
feet are better. Seems to affect conective tissue mostly. For a long time my
achelles tendons were a mess but they are better now. So far I have no joint
damage, but my fingers have been swollen for 4 months.
Meds-I was on Azulfidine last year and it helped a bunch. Unfortunately a blood
test came back high and had to get off it. My Rhmey put me on MTX about 6 weeks
ago (7.5mg weekly), I really went reluctantly, but I know that I cant let this
take over my life completely. So far I can see only a marginaly improvement. I
see him again on Tuesday and if the last blood test is ok I would think that he
will increase the dosage. I haven't noticed any side effects yet and I do not
take Folic Acid. I am also taking 12.5mg of Indocine and it seems to help better
than any of the other NSAIDs that I have tried.
Regards,
David

I'm still not entirely clear about which symptoms go with PA. Tendon swelling
is caused by it, right? What about non-swelling joint pain? If swelling,
tendinitis, and non-swelling joint pain are present, is it correct that a
DMARD should still be started?
Thanks,
Dwanna

I have told both Docs but haven't discover what it is....
I experience a sinking feeling in my left heel and my left buttock. Like
there's something missing. Nothing is missing but it sure feels like I
sink when I sit and I wear flipflops at home 'cause walking barefoot
does not cushion my feet enough.
Odd? Or does it sound familar to anyone?
Pat B
Eufaula, Alabama

In a message dated 2/20/99 2:23:07 AM Central Standard Time,
Rob Glover writes:
thanks so much for the laugh, Rob! You know, I think I still have a pair of
steel-toed shoes around here from when I used to be a process engineer in a
chemical plant. Perhaps I'll dig them out and wear them the next time I go to
the rheumy. They are UGLY though - they make Birkenstocks look like
Ferragamos.
Dwanna

Hi all,
I went to the dr for my weekly MTX injection. I am supposed to me getting
12.5 mg, but I glanced down at the chart and the nurse only was giving me
7.5mg, for the last two weeks. I think Ive been on it for two months and I
dont feel any better. I corrected her and she gave me the proper dosage. I
then asked to speak to my Dr. I told him I didnt think the celebrex was
helping better than the clinirol to justify the cost. So, he said go back to
the clinirol. He also gave me some utram for pain, does anyone know what that
is? So, I got the injection at noon and then at 4:30pm a wave of nausea hit
me, I felt awful. Im still taking 3mg of folic acid a day. I also asked the
Dr about Prednsione, telling him lots of people from this mailing list are on
it. He said he will not give it to me due to the weight gain, puffines and
brittle bones that develop. I really dont want to take it either. Just
thought I would share
Randi

Related to "bad" docs - I fired 5 doctors before I found one who even knew
what PA was, much less how to treat it. As a result I can still work every
day, walk well, and help Blue Cross spend their excess profits. I highly
recomend firing your Doc if you are not satisfied. I bet you can guess how I
feel about HMOs ;-)
On shoes/boots - I have found that SAS (San Antonio Shoes) work well for me.
My shoe size increased significantly after the onset of sore, swollen toes
that came with PA. SAS can be hard to find, but I travel fairly often for
work and make it a point shop for shoes when I visit Dallas or Atlanta. I've
tried a lot of boots, none have worked very well for me yet. I would recomend
steel toed shoes for kicking the Doc when that is needed.
happy trails - Rob Glover

Hello New Friends,
I first introduced myself a couple of weeks ago, and now have an update &
of course, questions....
After two weeks of arguing with Dr. Clueless, my former Primary Care Dr.
about getting my referral to return my Rhuemy(at RH request). He never did
approve it...wanted me to get new drugs over the phone, then he would
monitor my progress from there. Anyway, found out that the specialist in
Rhuem. is also listed as a Primary Care Internist, Yippee!!!! I'd dance a
happy dance if it wouldn't hurt so much afterward! Switched over & was
prescribed Azulfidine Entabs. Anyone ever take these? I have a pretty
particular tummy and am expecting the worst based on i-net surfing. Also
staying on the Daypro(nsaid) and the Predinsone(5mg per day). I have been
on the Pred. for about 5 months now & have been told it's ok. What
experiences have you guys had? How often do you get blood tests to 'check
things out'? I am terrified that I am going to do some irreversible
damage trying to treat this "wonderful" (heavy -sarcasm) disease! Any info
anyone has would be greatly appreciated!!!!
Also, I am going to Disney/Bahamas in a couple of weeks. Hope I can enjoy
it. Have any of you tried those gel inserts in shoes? Have they helped
delay the aching feet? I am in awful pain after about an hour of walking
and standing. And to what degree do the above mentioned meds make one prone
to sunburn. I know they all say avoid direct sunlight but I was wondering
if that means head to toe, long sleeves & hat or just some high SPF
sunscreen with my T-shirt & shorts?
Traci

Dear PA Friends,
For two days while I was away I took off the moderator hat, and let the list
open up. Unfortunately, some spammers somehow sniffed this out and did their
work. I locked the list up again so no messages will get through unless a
moderator approves them.
I will put out this plea again, if there is anyone on the list who would like
to co-moderate- even if for a few weeks at a time, please let me know,
Happy Valentines Day,
Michelle

In message <607bc51e.36acdd47@...
I have had P for 13 years and in the last 2 months, depsite being on
Neoral have developed PA. My Rheumy says at the moment it is only
manifesting itself as tendinitis and enthesitis. I wake up in the
morning with really stiff fingers but they do loosen within a minute or
two.
I'm a Veterinary Surgeon and today I X-rayed my hands and feet to see
if any arthritic change...none yet. (I stubbed my little toe 3 weeks ago
and it is still red swollen and painful...I suspect that this could be
the PA version of the koebner effect and now have severe tenosynovitis
in this toe as a result of the injury) I can't go on any DMARDS at the
moment as I'm on Neoral (that seems to have stopped working as my P is
now coming back in all the places it was in last summer).
My Rheumy seems to think at the moment there is probably no need to
start on DMARDS as as there is no *joint* involvement. What are your
experiences? I have read that even with enthesitis (e.g. the mild
achilles tendonitis at the junction with the heal bone and the
epicondylitis on both epicondyles on both elbows that I have) bone spurs
can develop with time....so I'm thinking that may be DMARDS should be
given.
I'm coming off Neoral in 4 weeks time so maybe that would be the time to
consider MTX, although my Rheumy suggests sulphasalazine and my dermy
has suggested acitretin.....both of these will only treat either skin or
joints whereas MTX will treat both. I don't want to give up alcohol!!
I've already given up smoking 7 months ago, surely we're allowed one
vice?
--
Dave Bentley

Dear Friends,
I was wondering if anyone else besides Lorna and I have been diagnosed with
Sjogrens Syndrome? It is characterized by dry eyes, dry mouth, vaginal
dryness, hoarseness, laryngitis,
sometimes other organs are involved as well.
I have found that sjogrens flares both at the same time as the pa and on its
own schedule - which is a bitch! the laryngitis is especially wierd - people
always have trouble recognizing
my voice on the telephone during these episodes.
I use salivart spray, and tried pilocarpine pills
for the dry mouth, but neither made a huge difference. sipping liquids all
day seems to be the only solution till it passes after a few weeks.
the eyes have been more tricky. I have had dry spots on my corneas diagnosed,
so i had plugs put in the lower punctum (drain holes) of both eyes, and also
had the upper punctum cauterized
twice (they healed open both times, dammit).
I also had moisture chamber glasses made, but have trouble because they fog up
from skin perspiration. Eye drops constantly seems to be
the only solution, along with resting one eye a day by putting lacrilube
ointment in and putting an eye patch on for the day.
I am due to go to the eye institute in NYC in December, so I am going to ask
about trying to close the upper punctum again - maybe we can try plugs that
won't slip out - i have had it with cautery that is for sure. It was like
someone using a 1000 degree woodburning tool
right next to your nose - after shooting your eye and lid full of novocaine
three times beforehand - real pleasant!
Anyhow, sorry I am so full of wind today,
I really do need a rest this weekend,
Dan, can you moderate and send messages to the list this weekend for me (us)?
I would really
appreciate it.
Thanks,
Michelle
Here is the link:
<A HREF="http://www.onelist.com/subscribe.cgi/PsoriaticArthritis"
Mailing List Communities</A

Hi all, I'm on my third week of Mtx and all is well. I actually seem
better already! I'm tolerating the med with no bad side effects, so
far. Cross my Fingers!
My question to the group is in regards to mouth sores. I'm not exactly
sure what they are? What do they feel like? Also, is it okay to take
more then 1mg of Folic Acid per day?
Thanks,
Tony

I am brand new to this list and looking forward to learning as much as I
can about psoriatic arthritis. If there are any websites with some
really good information, I would appreciate knowing where to look. All
I have been able to find is pretty general stuff.
I also suffer from Hashimoto's Thyroiditis and have three herniated
discs in my neck...and at this point not sure why I hurt or which
illness is causing which hurt! Hoping to learn from this group and be
able to sort this all out for myself.
Thanks for any information.....
Linda
Poulsbo, WA.

Michelle,
How are you doing today? Better I hope. Not much fun going through all
that.
How is the e-mail list going? I will help if you need it, just let me
know. Been kind of slow lately. Is that 'cause you're still under the
weather or is it just 'cause we are not a chaty bunch?
Please take good care of yourself,
Dan

Hi, my name is Becky Raine, I live in Elko, Nevada and I usually call
myself Beccajane (online) I'm excited to find a group dedicated to
PA. "Sorry your here" but, I'm glad I am. Bcky
--
~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*
Live your life so that if someone says "Be yourself," it's good advice.
~ Robert Orben
ICQ# 3047755
Genealogy is when you confuse the dead and irritate the living!
My Cousin Connection
http://www.angelfire.com/nv/beccajane/
Researching the following surnames; Armuth, Carr, Dowd, Falk, Lewis,
Malone, Raine, Sandusky, Shelton, Vulgamore, to name a few.
~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*

I didn't mean to imply that you could "catch" psoriasis like a cold. I
injured my skin on an area where she had her arms resting which might
have 'inoculated' me with some of her lesions, which we all know scale
off. It's just a theory. As for the unexplained rash and skin peeling
I had as child, it didn't look anything like psoriasis and it was
confined to a specific area; but who can know.
I told the story wondering if any others may have tried to trace there
first experience to a specific incident or illness.
Also, has anyone had any luck with any natural remedies?
Kathy

Hi, I'm new to the group. I'm a 36y.o. male. I've had psoriasis since I
was a teenager. It comes & goes depending on the time of year, stress etc.
My nails starting pitting in my late 20s. Two years ago the PA started
kicking in. I have it in many of my fingers & toes and most of my major
joints. I have been seeing a Rheumatologist since June 97. I tried MTX but
it was making me feel pretty ill with no apparent benefits. I am now on
gold salts for about three weeks. Seems like the PA comes in waves. I'll
have three really bad days followed by a couple of days where I feel really
good (comparatively speaking). I still feel there is so much about this
disease that is unknown. I have a feeling that it is fungus born hence the
nail-pitting and flaking/scaling. The odd thing is I almost never get a
cold and cuts, scratches heal almost before my eyes. As many of you
probably can relate, PA sometimes makes my life a living hell. Espccially
on the days when it takes me a half hour to get out of a chair or to sit
down. I am hanging in there and I haven't lost hope yet. I am losing faith
in the medical profession though and my doctor is reputed to be the best in
my area. Well, anyway, thanks for reading!
Joe Carelli

HI -
I'm new to this list - so be gentle with me ;-)
I have had PA for several years now, and have been taking Methotrexate,
NSAIDS, and folic acid to good effect. This helps the arthritis out a lot, but
doesn't seem to do much for the psoriasis. My doc has recently suggested I
consider adding cyclosporine to the mix for the skin problems.
Would anybody care to relate their experiences with such a treatment?
Thanks - Rob glover

wonderful!
Trish, have you been to Maui yet? My favorite place!
feet.
Can you wear light weight tennis shoes in the water?
Steve, I still have pain from damaged joints but the arthritis does not
move around anymore to other joints. Several times I have stopped the
MTX and after several month the arthritis starts to jump around. For me
it takes about three to four months to start to get things under control
again. This means starting out at lower doses and working up. Joints
that have fused do not seem to be bothered. How much are you taking? I
am at 20 mg/week
You should dump the Doc Char and seek another. Also I'm surprised you
aren't taking more than Relafen, since you have already had lots of
surgery. Are you able to tolerate other meds?
My next appt. is in three months, so if Enbrel is out by then and if it
is not too much $$$$ and if my insurance will cover it, than maybe I
will try it. Again I wonder if it will affect the skin as well. Iffy!
in Toronto. I also started an exercise
This is great!
<Andrea wrote:
<I have had 3 surgeries on my left hand already. One was to try and get
my index finger to bend. I was <walking around pointing all the time.
My surgery was on the left middle finger. I was walking around flipping
people off all the time. It was either surgery or getting beat up.
for new medicines that would give us
response was that several drug companies are close to develpoing a drug
that
from seeing anything some to
This would be great! Did the doc mention the name of said company(s)?
Hope this e-mail finds you all well,
Dan