Subject: Psoriatic arthritis FAQ
Date: Mon, 12 Feb 1996 15:28:22 GMT


       Psoriatic Arthritis FAQ for misc.health.arthritis
                (FAQ is about to be terminated)

   Currently maintained by: Bruce Giese, giese@world.std.com

  Anyone who wants to make any additions/changes/deletions just let
the maintainer know.  I'd like to reduce the size of the FAQ by
condensing some of the messages, but I haven't had time to do this
yet.  Posting frequency will be once per month (around the 12th).

  Anyone who wants to take over maintaining the FAQ (which will
include doing all the needed changes to condense it), let me
know and you can become a FAQ maintainer!  Otherwise, this FAQ
will be disctinued.  I don't have the time to maintain it,
the newsgroup is going all to hell with ads, and the information
here needs a serious overhaul.  The deadline for making a
decision is March 12, 1996.

  This is the FAQ for psoriatic arthritis, see the general
arthritis FAQ for more information.  This was originally compiled
(by B. Giese) from a thread on psoriatic arthritis that began with
the question from Steven Steinerman below in early January 1995,
just after the misc.health.arthritis group was created.  Several
additional posts have been added since then based on posts to
misc.health.arthritis and e-mail (included here with permission).

  This format of copying posts intact keeps the information more
personal, more direct, and it keeps more of the characteristics
of Usenet as opposed to say a book on the subject.  In addition
it shows the various perspectives and experiences people have
had.

  DISCLAIMER: There are no guarantees of the accuracy of this
information since it's just a compilation of posts to a Usenet
newsgroup.  For those who are liability-lawsuit crazed: Perhaps
it's time to learn to be responsible for yourself.

  This information is copyright 1995 by the various people listed
below.  This can be distributed freely for informational purposes
but not for commercial use (i.e. not to be sold or included as
information for sale) so long as this copyright message is included.
Small portions can be posted to relevant Usenet newsgroups without
this copyright message.

  Oh yeah, advertisements are explicitly forbidden in
misc.health.arthritis by the m.h.a. charter (included in the general
arthritis FAQ).  Posting an ad can result in someone contacting your
system administrator.

------------------------------

>From: Steven Steinerman,   steinerm@hades.wscis.wsc.com

I have recently been told by my doctors that I have psoriatic arthritis.   
I would like to receive information/feedback about this disease especialty  
cures/relief.
Any info avail on the net about it?  I have already contacted the  
arthritis foundation and the national psoriasis foundation for info.

------------------------------

>From: Bruce Giese,   giese@world.std.com

  I'm going to write down what I've learned over the last 5 years from
having it.  Anyone let me know if there's any mistakes here.

  Psoriatic arthritis is arthritis that goes along with psoriasis.  It is
incurable, but there are lots of ways to keep it under control.  Both the
psoriasis and arthritis tend to flare up off and on, rather than getting
progressively worse (although I did read that there are rare exceptions
to this).  For some people, the flare ups tend to conincide and for other
people they are independent.

  There are different levels of drugs for treating both the arthritis and
the psoriasis.  For the psoriasis, there are topical steroidal creams.
For the arthritis there are non-steroidal anti-inflamatory drugs (NSAIDs).
These are the medium level drugs.  Then there are the really powerful
drugs like methotrexate and gold treatment which can have really bad
side effects.  But they apparently work on both symptoms at the same time.

  What I've noticed in the last 5 years is that the NSAIDs seem to have
diminishing effects over time.  In other words, at first they have a big
impact on reducing the arthritis, but over time (you take them for very
long periods of time), it seems like you need to take them just to keep
things from getting worse.  I'm currently taking Tolectin (Tolmetin) and
Sulfasalazine(?) (which has very recently been shown to be effective
against psoriatic arthritis).  For these you need to get blood counts
taken fairly regularly (you might have to take folic acid if it [your
blood count] drops low).  I stay away from the methotrexate (which is
supposed to be better than gold) because I don't want to have to take
it forever like I'm taking the other stuff.  When you take methotrexate,
you needed a liver biopsy (Stefan C E Andersson tells me it's actually
not painful, but somewhat dangerous and is done with an operating room
standing by in case the liver is damaged) something like every two years.
However, it's now possible to avoid the liver biospy.

  There are lots of new drugs that seem very effective against the
psoriasis.  I don't have the names, but there is a clear tape (kind of
like scotch tape) which you leave on overnight that works well [Cordran
Tape].  There is some kind of stuff that you leave on for about an hour
which I find to be extremely effective, but it stains your skin (and
everything else) purple.  There is also a very new non-steroidal cream
[Dovonex].  This has a big advantage because the steroidal creams tend
to thin out your skin and if you use them too much for too long they can
do more harm than good.  The downside is that it doesn't seem to pack the
punch that the steroidal stuff has.

  What I've noticed for myself is that the arthritis tends to move around
between different joints over the years (foot, then knee and neck, then
arms, then wrists and fingers).  I've noticed that once it gets very swollen,
it is very hard to get rid of.  I had a cortizone injection in the knee
(quite painful) which immediately removed all arthritis there.  Doctors
don't like cortizone too much because it was apparently abused in the past
and probably has bad side effects if you zap yourself repeatedly.

  I find exercise works very well against the arthritis.  In fact, over
the years, I've gotten to think the drugs really don't do much good in
the long run.  The Drs tell me that both the psoriasis and arthritis are
caused by stress, so if you can reduce your stress level, that will probably
help a great deal.  I wouldn't know.  :-)  But I do find that keeping up
with the treatments, exercise, and lowered stress is what makes it go away.
And it goes away slowly enough so that one day you simply realize it's gone.
You'll probably need x-rays every now and then if you have one trouble spot
for long.  You don't want to have your joints erode (if they start to, you
can get serious for a while to make it go away).

  One important thing to do is to find the best dermatologist and
the best rhumatologist you can.  Here's a trick I'd recommend.  Try setting
up appointments with different doctors until you find one that won't take
you for about 6 months.  Make an appointment and in 6 months, you'll have
a good doctor.  I had a physician friend recommend someone who then wouldn't
take me for 4 months.  So I figured I use probability to find a good doctor
sooner: I looked in the same building for a woman dermatologist (with the
belief that the average woman doctor is probably less of a quack than the
average male doctor simply due to having to overcome more obstacles).  The
doctor I found had just set up her practice and she proved to be extremely
good (knowing about new treatments just as they were being announced,
recommending lots of different alternatives, and being very proactive).
Of course anyone I recommend to her now can't get an appointment for
6 months.  I believe it helps if you get a rhumatologist who knows your
dermatologist.

  Well, that's enough for now.  I'll save this stuff in case anyone wants
to make a FAQ in the future.  I actually went to 5 different doctors before
I could get a correct diagnosis.  In fact *I* was the one who correctly
diagnosed the psoriatic arthritis when I was looking through a do-it-yourself
medical book.  I presented the info to the latest doctor who told me he
didn't believe in that kind of arthritis.  :-)  That's when I went to find
some competant doctors.
  
------------------------------

>From: barbara cermak baedke, bcermak@silver.ucs.indiana.ed

Hi everyone!  I've been lurking for awhile and was happy to see so much 
discussion about PA.  I am a 24-year-old woman and I've had psoriasis 
since the age of 2 and PA since the age of 12.  My PA has been pretty 
progressive and is now a much bigger nuisance than my psoriasis (very 
mild case) has ever been.  I first had pain in my fingers, but now have 
PA in just about all of my joints with the exception of my hips, 
shoulders and one elbow.  My right hand is pretty useless (no cartilage 
left in several joints, can't open it fully, etc.) and my neck and upper 
back is very painful.  I've taken Naprosyn (not effective anymore), 
Clinoril, Meclamen (sp?), methotrexate, and all sorts of painkillers 
(which I hate because I can't afford to be as sick and/or tired as they 
make me).  I've seen several doctors since the age of 16, and am just 
about to try a new one in a few weeks.  

The problem I've run into lately is that the last two rheumatoid docs 
I've seen have no idea what to do with me at this point.  I believe their 
concerns are:

1..My young age coupled with the extent of arthritis that I have 
worries them.  I *refuse* to take any drugs which might effect my 
fertility in any way (haven't taken meth for about two years) as I plan 
to have a family.  They are also having difficulty finding an effective 
drug which they can use on a long-term basis.  I've had some hellish 
reactions to some of the drugs (Clinoril made me break out in hives, 
Meclamen had me sick constantly) and many of the others just weren't 
effective after a trial period which my doctor thought sufficient.

2..They seem to fear that many of the medications they could put me 
on for my PA might adversely effect my psoriasis.

3..The last doctor I saw wanted to pump me full of different 
medications and then get me into extensive therapy.  This would be fine 
except that he couldn't promise me that my fertility wouldn't be affected 
(meth was of course one of the medications he mentioned).  After I have a 
child (this may be in a year or so), I will be more than willing to be 
really aggressive and go thru whatever I need to make some progress.

Right now I'm just doing the aspirin thing which takes care of some of 
the pain and I also do exercises in the shower, etc., for my neck.  Are 
there any younger women on this group who have had sucess with their PA 
treatment?  Anyone have any ideas/thoughts which I can ask my doctor 
about?  I'd really appreciate any feedback thru the newsgroup or 
privately at bcermak@silver.ucs.indiana.edu.  Thanks! 

------------------------------

>From: Cheri N. Utt,   engcnux@gsusgi2.Gsu.EDU

  [this is a response to the previous post]

Hi! Wow, this is great! I'm 23 years old and I too have PA.  I was diagnosed
with PA when I was 18 years old.  I've been through just about all
the NSAIDs too.  Right now I am taking plaquenil and it seems to do good.
I know what you mean about it being expensive though.  I've never had
any luck with aspirin though, do you just take it by itself?  Well,
I had a lot of success with methotrexate too but I can understand your
concern.  The last rheumatologist I was with gave it to a woman who 
shortly after she went on it decided she wanted to have children and
just like the doctor in Vancouver wrote, after going off it for I think
it was a year, she got pregnant and her baby was fine.  Anyway, I hope
that you feel better!

------------------------------

>From: john galli,   gcgalli@sgigc20

I have had pa for about 13 years. Diagnosed at age 35. I have
been taking Lodine for about 1 year. It has been working well
for me. I started at 1200 mg/day (400mg 3 times a day: max
dosage) and am currently taking 800mg (400mg 2 times a day).
I was able to reduce the dosage a couple of months ago after
being on azulfidine for about 3 months. I am still taking the
azulfidine. I have no information on the length of time that
it will be effective.

------------------------------

>From: Lisa Ratliff,  catlover@cray.com

Hi Gang,

This is going to be rather lengthy and I don't post, so here
goes. I may not have a place here, but I ran across your group
and am very interested and could use your support.  I told my husband
about this group and he wishes he had access at home.  Anyways, here's
the story.

  In June of 93 my husband developed flu like symptoms and
ended up in emergency straight to critical care in a coma for two
months.  The conclusion was is that (we had just came back from AZ)
he was the only survivor of the hantivirus.  Anyways, it was a slow
recovery and by October he was up and around after extensive therapy.
I was ecstatic because when he entered the hospital our daughter
was 3 months old and I was told to make "funeral arrangements".  Well,
here we thought he'd really dodged the grim reaper and everyone was
astonished.  He was at our daughters 1st birthday party looking and
feeling pretty good.

  In April (94) he complained of his foot hurting.  Next thing he can
hardly walk. He went first to family physician who in turn referred him
to a podiatrist. After 2 months of failed attempts such as cortizone
shots and orthodics he then refers Rick to an orthopedist who did a
few test and noticed that Rick had a pretty extensive case of
psorisis.  He then sent Rick to the rheumitologist.  This has been
5 months now and his case is severe. He can hardly walk, his finger
has bent back and his toes are deforming.   His neck and shoulder are
completely out of alignment.   He is miserable.   He has a severe case
of psoratic arthritis.

  Dr. Young puts him on MTX.  God, I hate those days, I would rather
not go home.  I know he's in pain but he used to be a sweet loving
person who now gets angry so easily and I can handle it, but it's
rough on a two yr. old (Feb. 12 actually).  I know he loves us, and
I really do understand at least to the extent that I can. He went
from a healthy happy person so quickly that it's very frightening.
The MTX cleared the psorisis.   This is good, I can tell people with
all types of arthritis that I feel psoratic arthritis is a double
whammy!  I also know from him that it is extra rough because the
arthritis is debilitating enough without the unsightly sores, itching
and bleeding of the psorisis.

  I guess what I need is support for both of us, I do understand
folks, I live with this everyday. He is severe enough that he has
problems with using the restroom, we have to 'use a urinal cup (I
really hate this, I don't mean this bad but maybe some insight from
the other side is helpful too), he can occassionally and really
does try to take showers everyday, he holds a job and works from
home (thank goodness).  He can drive, doesn't like to and I do worry
when he does.  I don't know what I want from you guys, and I've
been thinking about writing this for a long time. He is currently on
MTX, folic acid, hydrocodone.  It hasn't seemed to help too much.
I don't see much improvement and his doctor isn't pursuing any
other avenues.

  What about the deforming?  Will this just be progressive, I
think Rick doesn't ask sometimes because he doesn't want to know.
I do.  I sometimes look back after his recovery and almost wonder
if it wouldn't have been better if he hadn't.  I would never tell
him and please don't flame me that I'm negative, I'm not, I'm
scared to death.  I have a two yr. old daughter and am frightened
of the future. Is there any hope? He did therapy for almost a year
and gave up because he didn't think it helped.  I don't know what
to do, I've tried to get him to go to support sessions, he won't.
He almost really can't.

  I bought him a really good chair for Christmas because he sleeps
in it and the other one was not supportive enough. I'm desperate
and don't know what to do?  I promise, I'm not whining, I'm just
scared.  I need to learn how to better deal with my emotions also,
maybe some of you can help me with that?  I do encourage him in
every way I can, I think I have done a good job, but I get so
discouraged but do not show it, unless I have those "blow up",
blaming sessions which I mean at the time, but really don't.  I
have great friends to talk to and without them, I'd be lost.  But
they aren't "there" and don't "fully" understand.  Well, I've
really rambled, I do apologize.  But any encouragement anyone
can give us would be more than appreciated. BTW, he's only 34
and scared too!

Thank you all for listening.

Sincerely,
Lisa

------------------------------

>From: David Powner,   David@filtermx.demon.co.uk

Lisa....

Following your earlier post on psoriatic arthritis, I've been searching
for more (any) information, and I've come up with the following, which
I quote verbatim in a post to the group as well as direct email to you:

"Taking double doses of vitamin D might provide a "double" solution to
people suffering from PA.

Symptoms include dry, scaly, inflamed skin in addition to aching arthritic
joints. It's a "double disorder" with double the pain and irritation.

But now there might be double relief in the form of a vitamin.

Scientists evaluated 10 people who suffered from active PA. Each person
"rated" the amount of pain, stiffness or discomfort from the arthritis, and 
the researchers took pictures of the psoriatic sores on each person.

Each participant in the study began taking a half-microgram of vitamin D3
each day. Researchers increased the dosage by a quarter -microgram per day
every two weeks until the participants reached a maximum dosage of two
micrograms each day.

Researchers evaluated the 10 people once a month for 6 months. During each
evaluation, the study participants were asked to rate their arthritic pain,
and researchers took more pictures of their painful skin patches.

After six months of vitamin D3 therapy, seven of the 10 reported improvement
in joint pain. Of the 10 , four had substantial (greater than 50%)
improvement, and three had moderate (about 25%) improvement. Two were
unable to complete the study.

Some also said their skin sores got better. However, the improvements
varied and didn't reflect changes in the arthritic symptoms.

Although the study involved only a small number of people who suffer 
from PA, researchers suggest the positive benefits of vitamin D3 therapy
are impressive.

All other therapies used for PA (anti-inflammatory drugs, steroids and
gold salts) have potential harmful side effects.

We produce vitamin D3 in our skin naturally. Oils from fish liver are rich 
in D3.

Scientists are hopeful that D3 will provide a safe, natural way to combat
the pain and irritation from PA."
(Source: Arthritis and Rheumatism (33,11:1723)

The RDA for vitamin D is 5 micrograms per day for people over the age of
25. The above supplements are only about 20% of the RDA. Be careful of
overdosing - 5 times the RDA has produced toxic symptoms in children.
(Source - Recommended Dietary Allowances, 10th Edition, 1989)

------------------------------

>From: barbara cermak baedke,   bcermak@silver.ucs.indiana.edu

Hi everyone!  I have PA in my hands very badly and have no cartilage left 
in one of my right knuckles (middle finger).  Had x-rays done awhile 
ago and it's not a pretty sight.  Of course, it doesn't feel too good either.
I've had a splint made which I try to wear while not active or when my 
hand is especially painful and I've also tried parafin (sp?) baths.  I 
can't fully open my palm and can no longer play tennis, etc. because of 
pain/inflammation.  Are there any operations out there for replacing 
finger/knuckle joints?  I get the impression from my docs that the 
technology just isn't there right now for this, since they seem to think 
my best bet is to use my splint and exercise my hand as much as possible 
without stressing or overextending the joint in question.  I've also done 
some reading and haven't seen this kind of replacement mentioned. Thanks 
for any feedback!

------------------------------

>From: barbara cermak baedke,  bcermak@silver.ucs.indiana.edu

[Question about how long it takes to lose cartilage, etc.]

I've had PA for 12 years (I'm 24) and have had a loss of cartilage in 
only one finger joint.  My fingers became very painful at about 21 or so 
and it only took about 2-3 years for me to end up with a very disfigured 
hand. My middle knuckle is always inflammed because I have no cartilage 
(not pretty on an x-ray).  My neck is *very painful* but I have x-rays 
about once/twice a year and have also had a nuclear bone scan and they 
find absolutely no joint damage whatsoever.  Hard for me to believe 
because of the pain...but, hey, I ain't complaining :)  I really don't 
know what triggers degeneration in one particular joint or what the 
average time it takes to have this happen is, though.  Just my experience.

------------------------------

>From: Cheri N. Utt,   engcnux@gsusgi2.Gsu.EDU

Hi! Gosh this is the second time tonight I have responded to this
news group.  I find it so comforting to know that there are other
people who feel as I do.  I have PA.  I am 24 and was diagnosed 
when I was l8.  I feel that each of us is only given what we can
handle, that we are given a certain burden because we are strong
enough to bear it and that somehow our experience albeit frustrating
at times can help others be it through understanding, listening or
whatever.  I know how how grumpy pain makes me; I know how it changes
me at times, but you know as my mom put it, it builds character.

In my experience I have found that the weather, food, vitamins,
medicine, and most of all my attitude affect my disease.  Not that
yoga or meditation can overcome my pain but I do like to think
that I am in charge, that I can overcome.

I do think that PA affects everyone differently and this is just
my experience.  MTX did wonders for me, but it is not recommended
for females and so now I am on plaquenil.  I think that the first
couple of months after having PA were the hardest and I'd like to
think that I am doing better.  I used to take twice as many pills 
as I do now.  I'd like to credit the reduction to my 
wonderful and caring boyfriend of three years and some great sex!
Hah! Anyway, I wish you and your husband all the best!  It sounds
to me like you really love and care for him, and that you
are truly concerned about him :-))

------------------------------

>From: Linda Cox,   lcox1@xray.indyrad.iupui.edu

I am 36 and also have PA.  I was diagnosed  6 years ago, more
annoyance than  severe pain.  Until this August then.... MAJOR
KNEE PAIN.  I have P since I was 15 and knew I could get PA but
hoped I wouldn't.  I've been following the posts from other PA's
and feel like you've have all experienced much of what I've gone
through.  My major problem right now is there seems to be little 
control of my symptoms at this time.  I'm taking azulfidine,
indocin and  prednisone and tylenol 3 when the pain is really
severe.  My knees cleared up after prednisone and being drained
but my hands are the worst now.  I have to wear gutter splints
on my third and fourth fingers on my left hand since I had begun
to get Buttoneire (sp?) contractures.  (I'm a lefty... it's
difficult to write with them on) and passive splints on my hands
at night (I alternate nights so I can scratch my nose  :  ) !

The worst is the depression  that comes and goes and the not
knowing how much worse it will get.  I so glad I found this news
group... it doesn't take away the pain but I'm not alone.
I am just realizing the adjustments that I may have to make.
Stairs are out for me now.  I may have to get a new car (I'm
having trouble with my stick shift) and brushing my teeth became
a real problem.

Here's what I've learned since getting PA.

1. Vacation in Florida every year  is not just for pleasure but
helps my medical condition.  I go every year slather on the
sunsceen and bake for a week.  My p gets better and I feel great
for 3-4 months, the sun seems to help with the aches and pains.
I no  longer feel guilty for spending money to veg out on the beach.

2.  Electric tooth brushes are great!  My hands and wrist don't
hurt from that chore anymore.  If you don't have one I highly
recommend it!

3.  Same for electric can openers.

4.  Exercise has really helped me a great deal.  Weight training 
and water aerobics have decreased my pain and increased my flexibility.

5.  Exercise also helps deal with my mega munchies from the prednisone.
Does anyone else feel like they could eat the furniture when taking
steroids????  

6.  Splints from OT have really been a big help to me.  My hands and
wrists  aren't nearly as sore and the contractures have lessened.
(I was fortunate that they were treated early)

7.  I have  great family, friends and an employer who support me
through all this.

8.  Now I found this news group and can gain from the knowledge and
experience of people who really UNDERSTAND what it feels like to live
with this disease.

My thanks to all who share in this forum.  I feel so much better knowing 
you're there.

------------------------------

>From: Rick Holt,   holt@watson.ibm.com

....I have had p for about 20 years and pa for 10 of them.
Here are some of my experiences:
 
|>   What I've noticed in the last 5 years is that the NSAIDs seem to have
|> diminishing effects over time....

I have had similar experience.  A NSAID will work for a while and then
stop working.  Then it's time for the painful task of switching to another.
I started with Clinoril until it stopped working (5 years) and then to
Feldene for 2 years.  Then back to Clinoril and now back to Feldene
again.  Several other NSAIDS have caused me headaches or just not worked.

|> I stay away from the methotrexate (which is supposed to be better
|> than gold) because I don't want to have to take it forever like I'm taking
|> the other stuff....

I've taken methotrexate occasionally, mainly when the p is out of control.
I hate it.  I get nauseated for several days after each dose.  Sometimes
even before a dose (what does that tell you? :-)  My best experience has 
been with methatrexate and UVB together, but you have to be careful

|> There
|> is some kind of stuff that you leave on for about an hour which I find
|> to be extremely effective, but it stains your skin (and everything else)
|> purple. 

Anthranin (sp?) a coal-tar preparation.  It's very easy to burn yourself
with this stuff.

|> There is also a very new non-steroidal cream....

Dovonex (sp?)  A vitamin E extract.  I tried it and worked wonders for
about 4 weeks, then it started making the p worse.  Took me 2 months to
get back to where it was before.  But from what I've heard, most 
people have good results with this stuff.  
 
|>   What I've noticed for myself is that the arthritis tends to move around
|> between different joints over the years (foot, then knee and neck, then
|> arms, then wrists and fingers).  I've noticed that once it gets very
|> swollen, it is very hard to get rid of.

My experience too.  I've had injections twice and they have worked wonders
at knocking out the inflamation.  My first rheumatologist, though, did it
without novacaine.  Don't ever let anyone do that to you!!!

The hard part about psoriatic arthritis is finding information or
expertise.  It is cross-disciplinary so it's hard finding a doctor
with the experience to treat it.  It is not as common as rheumatoid or
osteo arthritis so new drugs are not tested against it.  (My current
rheumatologist suggested Lodine, but the PDA says it is good for oa,
not for ra, but says nothing about pa.)

------------------------------

>From: Bruce Giese,   giese@world.std.com

  One thing I wanted to add about psoriasis: strep throat (and
presumably other forms of bacterial infection) has been shown
to cause flare ups of psoriasis.

  Also, I find that taking care of my psoriasis is the only
way to keep my own arthritis under control.  And the best way
to do that seems to be in taking good care of your skin. I've
found Eucerine creme to be a very good skin conditioner and
using it regularly as preventative medicine works well for me.

------------------------------

>From: John Loftus,   loftuj@morakot.nectec.or.th

  [from e-mail to Bruce Giese, included with permission]

The input from fellow sufferers was very informative; only someone who 
has PA knows how severe the pain is plus the depression that often comes 
with it. The latter is not so much from felling sorry for oneself as it 
is organically related to the disease.

For me P was diagnosed 20 years ago at age 30. PA symptoms began about 
three years later and have fortunately come and gone since that time. The 
last episode began two years ago and involved three knuckles of my right 
hand. Rhumatologist informed me that PA tends to diminish with age, so 
there may be one benefit to growing old. Like one contributor said, try 
to minimize use of cortizone ointments as they thin the skin and cause 
veins to become visible on the surface. One approach is to use the lowest 
level of active ingredient possible. For me, 0.25% Aristocorte gives 
excellent result on facial skin, although I have to use Topicorte for the 
scalp. Like many of you, I have had many joints and connective 
tissue involved so far: plantar fascia, knees, middle finger (with 
ruptured synovium), shoulders, and most recently knuckles of index and 
middle finger. Several NSAIDs had to be tried for each outbreak. The one 
that gave best results for worst attacks is Indocin, although I almost 
developed a stomach ulcer taking it for two years. Physical stress or 
injury to joint can cause flare up, which takes years to supress. My best 
wishes to all of you. If I find any information that might be useful, 
I'll pass it along. But feel encouraged, that your condtion should 
improve with fewer and milder occurrences as you get older.
 
------------------------------

>From: Suzanne Chiles,   suzanne@teleport.com

  [from e-mail to Bruce Giese, included with permission]

I've had PA for about 6 months, and psoriasis for about 5 years.
At the age of 45, I guess I'm a late bloomer.

I have been on Methotrexate for about 5 months.  I just had my first
liver biopsy.  And it's not very painful -- hardly a problem at all.
My PA went straight for the feet, effectively turning me into a cripple.
I started out with a cane, but progressed to crutches quite soon.  I
started on MTX and the pain left fairly soon.  I have some nausea
from time to time, but a healthy dose of folic acid has really helped
with that.

MTX may not be for everyone, but it made a tremendous difference in my
life.  I rejoice in everyday that I can get up and walk without
crutches.

------------------------------

>From: Nick Simicich,    njs@scifi.maid.com

I've got PS and PA.  I also have a dermatologist who was interested in
letting me try a bunch of the new stuff that has come out to try to
figure out what was good for me.

>There is a clear tape (kind of like scotch tape) which you leave on
>overnight that works well.

The brand name is Cordran Tape.  Contains 4 mcg of flurandrenolide/sq
cm.  You are supposed to apply it, remove it 11 hours later, wash the
area, let it dry, and reapply it.  I use it where the scaling has
gotten bad enough that I want to debride the area.  It does not stick
well to joints (knuckles, knees, elbows, and the like) so sometimes
I'll hold it on with sticky roller gauze or paper tape.  The adhesive
does not seem to cause allergic reactions for me, and I typically get
reactions from adhesive tape, and some bandaids, but not from paper
tape.

I don't like to use it for more than three successive applications -
the skin under it seems to start to smell, and that can't be good.
But three applications will allow a lot of skin healing to go on and
I've gotten a couple of spots to return to a normal appearance this
way.  I usually follow this with a day of no treatment and then a
topical ointment for a while. 

  [Comment: I had the same problems, plus the skin gets thin if you use
   the stuff too much.  Bruce Giese 5/3/95]

>There is some kind of stuff that you leave on for about an hour
>which I find to be extremely effective, but it stains your skin (and
>everything else) purple.

Never used this.  I did go into a drugstore in Israel a few years ago
when I had a flareup on a trip and ran out of ointment.  They gave me
something that stained everything even though it looked white when I
put it on and that barely held the patches at bay, but I never knew
what was in it because it was labeled in Hebrew.

  [Comment: This is the same stuff.  Bruce Giese 5/3/95]

>There is also a very new non-steroidal cream.  This has a big
>advantage because the steroidal creams tend to thin out your skin and
>if you use them too much for too long they can do more harm than good.
>The downside is that it doesn't seem to pack the punch that the steroidal
>stuff has.

If this is what I think it is it is Dovonex [yes. BG].  Green tube, white
writing, manufactured in Ireland, marketed in the US by
Westwood-Squibb.  The stuff I have is labeled 'Vitamin D3 analog'-
Calcipotriene.  I'm using it on my heels as sort of a control.  I had
a spot on my ankle that I was also using it on, but that spot kept
getting out of control, bleeding and oozing, and I've gone back to the
tape for that spot.  The D3 ointment seems to work extremely slowly at
best.  But you can use it every day.

  [Yet Another Comment: Yes, I found the same thing.  Bruce Giese 5/3/95]

In general, it keeps my heels from getting worse, and allows them to
heal slowly.  You have to use it for a long time, all of the time,
even though you see no visible day to day improvement and then compare
it over a long term before you see improvement.  Cortisone type
ointment will give instant relief, improvement in a day --- this
won't.  And, for me, at least, it won't knock down a bad flareup.

For steroidal ointments, I've discovered that brand names really make
a difference to me.  The generic stuff they sell at the local pharmacy
seems to not have much of any effect.  Psorcon used to be effective,
but isn't any longer, even when I used it under a bandaid, which was a
trick that I could use to get a bleeding knuckle healed.  Temovate
seems to be real effective, but you have to lay off for a week after
you use it for two.  You also can't cover it.

I've been lucky enough never to have needed MTX.

------------------------------

>From: Kam Shojania, MD    (kshojani@wimsey.com)

>     Thanks for posting the FAQ on PA. I'm new here and didn't see all 
>this stuff when it was being written.  It sounds so familiar!  It doesn't 
>remove the pain, but it helps to hear fr m others with the same (and 
>worse) problems.
>     One comment - Twice I saw mention of liver biopsy for methotrexate 
>users.  That is no longer required.  My rheumatologist (what's the 
>abbreviation?) follows research very closely and reports to me each time 
>I see him how safe the drug is.  I have a liver function blood test each 
>time I see him.  He said that it has been proved that the correlation 
>between that blood test and a liver biopsy is close to perfect.

I just wanted to make a comment about methotrexate and liver biopsies.  I 
would agree that in most cases, a liver biopsy is not routinely done for 
people with RA on methotrexate.  The answer is still not clear for Psoriatic 
Arthritis (PA) and methotrexate.  

The major studies and the consensus document for methotrexate (MTX) treatment 
in rheumatic diseases have been done with RA.  Previously, MTX was used for 
psoriasis and the literature done on psoriatic arthritis shows that you may 
get liver problems with methotrexate in people with PA despite having normal 
liver blood tests.  This occurred in only a few patients.  Risk factors for 
liver problems included obesity, diabetes and alcohol.  These data are from 
the 1970's and 80's.  

The question is, should we extrapolate the data for RA patients treated with 
MTX to PA patients treated with MTX?

I am not sure we can.  We know that people with PA can have underlying mild 
liver dysfunction without being on medications.  They may be more 'sensitive' 
to the effects of the methotrexate.  There is a theoretical possibility that 
they could have liver problems with normal liver blood tests (according to 
older but still valid literature).

So what do I do?  I often use MTX for psoriatic arthritis.  I try to minimize 
the risk factors if possible (alcohol especially).  I give the patient a 
verbal summary of what I have written above.  

Like most others (here in Vancouver) I am more cautious about methotrexate in 
PA.  Despite what I said above, I don't get routine liver biopsies.  I do 
discuss the option with the patient at a cumulative dose of around 1.5 grams.  
None have chosen the biopsy so far.  You will find a difference of opinion 
among the rheumatologists and hepatologists about this.   My opinion (without 
much evidence for it) is that it is probably safe in PA without getting liver 
biopsies.

Note that this is for PA.  For RA, I am content to follow the liver blood 
tests regularly.  

If anyone is interested, the summary article for methotrexate in psoriasis is:

Roengik HH Jr et al. Methotexate in Psoriasis:  Revised guidelines.  J Am Acad 
Dermatol 19:145-156, 1988.

Obviously we need a new consensus about how to monitor MTX in PA.  

Kam Shojania, MD, FRCPC

------------------------------

>From: Ed Anderson   (ed@crl.com)

>I've used Dovonex and find it ok, but not fantastic.  I like it because
>it's not a steriod.  It seems like it heals up the dry skin very well, but
>the redness remains.  Others have said it makes their patches heal up, but
>the skin remains really dry.  So, it seems to be different for different
>people, like most drugs.

Double blind clinical studies have shown significant improvement over placebo.

I have some calcipotriol .005% as Daivonex (from Leo) that I tried when it was 
still experimental here in the US (I had a friend bring it back from Mexico.)  
It is in a petroleum base and does not work much better than vaseline for me.

The National Psoriasis Foundation in Portland, OR has a pamphlet on Dovonex.
They will send out an info kit if you call 1-800-723-9166 or 1-503-244-7404.
They are a non-profit organization and any donation will get you a membership.

------------------------------

>From: Gary Rotter   (gr5@ElSegundoCA.ATTGIS.COM)

Some notes on psorasis treatments...

Temovate is now available genericaly.  I like the generic
better than the brand name because the ointment is easier to
get out of the tube and spreads better than with the name
brand.  If you don't have prescription drug coverage the
generic version could save you some big money.

The white ointment that stains everything purple is called
Drithrocream.  It is a coal tar extract available in three
strengths.  I am getting good results using this at night
and the Temovate during the day.  I also follow the two
weeks on, one week off schedule for the temovate.

I also found an over the counter product that might be
useful.  It is called Scalpacin Deep Itch lotion.  It is
3% salacyitic acid in an alcahol base.  I started using
it on my scalp less than a week ago and so far it looks
like it might just might be a winner.


------------------------------

>From: Ron Graft    (graft@nvl.army.mil)

In article rn9@maureen.teleport.com, suzk@teleport.com writes:
>  I was recently told by my doctor that I suffer from PA.  Suffering is
>putting it mildly, I have pain and swelling predominatly in my hands and
>feet ( other areas affected but not as severly ).  There are days the pain
>in my feet is so extreme I can hardly walk.  My doctors answer for this is
>to lose weight and take ibuprofen. 
>  I am currently taking steps to shed the additional lbs. and have
>stopped taking the ibuprofen as it tears up my stomach.  There is so much
>I don't know about this condition, whether what I am experiencing is the
>norm.  I have been told it is migratory (?) but thats about all.  I would
>really appreciate any feedback on this subject. Just finding this group
>and knowing I am not alone has been helpful.                             
>.Ignorance is not bliss 
> ..Suz
>

I have had psoriasis for nearly 35 years and diagnosed with psoriatic
arthritis in 1989 at age 54.  At that time I had severe pain and inflamation
in my wrists and several fingers.  I was treated with a variety of nsaids with
little success and finally put on oral gold for approximately 1 year with good
results--only some lingering minor pain in one wrist.  Now the interesting
thing happens:  In 1991 I have arterial blockages in my heart and after three
unsuccessful non-surgical procedures, have a triple bypass.  I was taken off
of all medication during and after the hospital stay.  Since that time I've 
been free of all arthritic symptoms except for a minor stiffness in one
hand.  For four years I have been off of medication, exercise regularly, eat
a low fat diet and have had no recurrence of any pain or inflammation.  I know
that PA is subject to flares and remissions but I often wonder if the trauma
of heart surgery had anything to do with my symptom free condition.  

In any event, I don't recommend heart surgery as a "cure" for PA :) but would
certainly like to hear of any related experiences.

------------------------------

>From: Marjorie Riggio    (mriggio@aol.com)

Dear Suz:
So sorry to hear about your PA.  I will try to answer your concerns.  As
for the stomach upset with ibuprofen, be sure you were taking it with food
(more than a cracker, but not necessarily a whole meal).  Also, some of
the others may be less hard on your stomach, or you may need to try some
cytotec, a drug that helps heal the stomach lining even while you are
taking the anti-inflammatory meds.  You may not be able to get by without
some type of anti-inflammatory medicine.  Gold, methotrexate, or plaquenil
are other drugs which work to put the disease into remission.  This may be
of benefit also, since it sounds like you are having a lot of pain right
now, and we want to prevent damage to the joints from the inflammation. 
An exercise program, and control of your skin symptoms should also be
undertaken.  Although losing weight may also help, it is hard to diet and
eercise when you hurt!  If I can answer any other questions, just let me
know.  Good Luck!
Sincerely,
Marjorie Riggio, RN

------------------------------

>From: Sjanna Johnston    (johnston@mhc.uiuc.edu)
and:  Debsusan           (debsusan@aol.com)

  This post is actually about rheumatoid arthritis, but I've included it here
because it's relevant to psoriatic arthritis as well.

debsusan@aol.com (Debsusan) writes:

>I've had RA for 12 years now - since I was 28.  I'm finding I'm entering a
>new level of grieving about the losses and changes in my life and it is
>really tough.  It's like it's moving from chest level to gut level, if
>that makes sense to anyone.  Just when I think I've resolved most of those
>issues - the "I remember when" kicks in again.  Yesterday, it was such a
>beautiful day and I was feeling pretty "good: (a relative term used to
>compare today with yesterday) so I decided to plant a few flowers in the
>garden.  I thought I was being really careful about my joints and how I
>did things and it felt so good to bring a touch of spring to the yard.  A
>few hours later, I was in major pain.  This morning as I drove to my
>therapist appointment I saw people walking, jogging, biking etc. and I
>began to remember when it was so easy to do those simple things most
>people take for granted.  I got to my appointment and cried the 1st half
>of the session because I felt so sad - and I don't often cry.  Only this
>time I was grieving on a much deeper level than any time since my
>diagnosis with the exception of the day I realized I had to give up a job
>I loved because it was too physically demanding.  I have a hard time
>feeling things, even after a few years of therapy, so when these deep
>things come up it feels almost overwhelming at times.  I'm just posting
>this hoping that writing might help with the pain - emotionally and
>physically and to somehow give myself permission to feel the losses and
>accept them as valid, not "wrong" after all this time.  Thanks for reading
>this and for the support this group provides.  Deb 

I think you're absolutely normal, Deb.  I don't know a one of us who doesn't 
grieve over that which has been lost. It strikes me periodically, less
so than 8 years ago, but just as intense. I am an MD...that's all I've ever 
wanted to do. I had a L wrist fusion (successful) 9/94...now I have no pain
there, but no mobility there either. I consider that a fair trade. However
I can no longer do Gyne work, minor surgery (which I loved), or some 
orthopedics. I grieve about this, periodically...cry occasionally, but 
mostly have survived due to my involvement with asa & mha...the peolple I 
have "met", the folks I may have helped, the friends who have allowed me to 
ventilate my feelings. Also the Arthritis Foundation...I think I'm slowly
becoming an "activist". To paraphrase Kahlil Gibran from "The Prophet"
(which I 1st read more years ago than I like to admit)...look within 
yourself, and you will see that only that which has given you great joy can 
be the cause of your tears...look again and you will see that only that which
has caused you tears will have brought you joy. Joy and sorrow are part of 
the same whole...you are human, something you share with all of us, and a 
citizenship which you can never renounce. Do what you can, when you can...
let us know here...you are WHY we're here...you have acquired a "family"
now, and we are all here for each other. 

The hardest part for me is that as an MD I KNOW what is happening 
intellectually. But that's a whole different thing from the "FEELING"
part inside...I'm still working on that, a little each day.
My best wishes,
Sjanna

------------------------------

>From: Robin Fairbairns   (rf@cl.cam.ac.uk)

>.I was recently told by my doctor that I suffer from PA.
>Suffering is putting it mildly, I have pain and swelling predominatly
>in my hands and feet ( other areas affected but not as severly ).
>There are days the pain in my feet is so extreme I can hardly walk.
>My doctors answer for this is to lose weight and take ibuprofen. 

You've obviously got a bad case of it (I have it in hands, wrists and
knees, but they don't swell much -- just hurt like ***).

>.I am currently taking steps to shed the additional lbs. and
>have stopped taking the ibuprofen as it tears up my stomach.  There
>is so much I don't know about this condition, whether what I am
>experiencing is the norm.  I have been told it is migratory (?) but
>thats about all.  I would really appreciate any feedback on this
>subject. Just finding this group and knowing I am not alone has been
>helpful.

The problem I've found with losing weight is that the pain makes it
_very_ difficult to exercise.  The occupational therapist helped
there, but I still don't exercise enough.  However, don't give up on
the drugs: they all give problems with the stomach to some extent or
other, but no two of them are the same (in my experience, and
according to my doctor); I would advise going back and asking for
something different -- Ibuprofen did absolutely nothing for me.  I've
been trying different drugs every 9 months or so since I started --
the idea is to find the one that best deals with the pain: I'm not
there yet.

>.Ignorance is not bliss 

You bet.  I've found my doctors (both GP and the specialist he
referred me to) very sympathetic and eager to help; in particular,
they're happy to explain things like this business of cycling through
the drugs, prognosis, and so on.  (Of course, I pay for all the
medical attention through my taxes, so I'm not afraid of the effects
on my pocket, but...)


------------------------------

>From: Rick Holt    (hold@watson.ibm.com)

Here's my experience treating my own PA which I have had
for about 10 years:

Ibuprofen:  I tried it first, but it was not strong enough.
            Also, it upset my stomach a lot.  I was really
            surprised when they made it nonprescription.

Clinoril:   This is an NSAID (Non-Steroidal Anti-Inflamatory).
            There are LOTS of these!  This one, at the max
            dose, helped me for almost 6 years.  Then it 
            suddenly stopped working.  This behavior is typical
            of NSAIDs, at least for PA.

Feldene:    Another NSAID.  Very expensive.  One pill a day
            but they cost $2 each.  Stopped working once, but
            it's doing well now.

Methotrexate:  Serious medicine!  In larger doses it is called
            chemotherapy--for cancer.  It can get rid of both
            the arthritis and the skin lesions at the same time.
            Can have unpleasant side effects.  I had nausia
            for 36 hours after each weekly dose.  If your
            skin is really bad, Methotrexate and UVB light
            can work wonders.  But be careful!

Injections: Wonder drug!  PA has a curious behavior:  Medication
            can keep all your joints from becoming inflamed, but
            if one slips by, none of these NSAIDs will bring 
            down the inflamation.  Find a good rheumatologist
            and have the joint injected.  Make sure they use
            novacaine, though!!!  24 hours later your joint
            will great.  Then keep it feeling good with the NSAID.

It is extremely important to find a rheumatologist that you
like and trust.  Changing (or finding new) NSAIDs can be very
frustrating.  There's no logic to it.  One that helps me may
do nothing for you.  Naproxen has helped lots of people but
has no affect on me.

------------------------------

>From: Sjanna Johnston    johnston@mhc.uiuc.edu

>>Did someone mention that folic acid was the thing to take if you are
>>anemic? I read in the arthritis foundation leaflet on PA that extra iron
>>is no good in these cases.

>  I was the one who mentioned it a long time ago.  I've been taking
>Sulfasalazine(?) and it can make you anemic.  Several times I've had
>to take folic acid due to a low blood count(?).

>>Does folic acid come under another name or a brand name? It just seems
>>a funny thing to ask the chemist for!

>  No, it's included as part of multivitamins, but in a small
>amount.  You need a prescription in the USA to get it.  I don't know
>about the UK.
>                               Bruce Giese

In the US you need a prescription for the 1 mg tablets. Multivitamins in 
the US usually have between .4-.8 mg/tablet.
Folic acid (also called folate or a special kind called leucovorin which IS 
very expensive in US) is also commonly prescribed with MTX in order to 
combat side effects such as sore mouth, nausea, fatigue. This low dose 
folic acid has NO adverse effect on the rheumatological benefits of MTX.
There was a thread about this awhile back mostly on asa.

------------------------------

>From: Diane M. Adelstein    dadelste@wam.umd.edu

: Since writing this yesterday I have located it in the chemist. It's labelled
: folic acid and is in the "female care" section! On closer inspection
: it says it should be taken every day of your pregnancy and will keep
: mother annd baby healthy!!! Weird.

: Apparently I'm slightly anemic but have had no treatment apart from NSAIDs.
: Could being a vegetarian have somehting to do with it?
: Pete Philips

Actually, if you're a vegetarian, it's more likely that a deficiency of 
b-12 is causing your anemia.  It's very difficult to get enough B-12 
without eating meat. With that said, let me equivocate.

Deficiencies of B-12, iron or folic acid can all cause anemia. One of the 
reasons higher doses of folic acid are Rx only is bc you can obscure the 
cause of the anemia by treating it with folic acid when sometimes it's a 
deficiency of one of the others.  There is also an "anemia of chronic 
disease" which results from no deficiencies at all. So, you might 
actually want to get this checked out and narrow down the cause of *your* 
anemia so that you can get it treated properly.

------------------------------

>From: Tim Casey, Hemochromatosis Foundation   hcfdn@primenet.com

[It is true] that there are many causes of anemia and that one shouldn't
take iron without specific medical advice.  ...[Also] hemochromatosis (HC),
the genetic disease which causes an iron excess, is also the cause of 10%(+?)
of arthritis in the U.S., but is usually not diagnosed as HC.  Interestingly,
HC can also cause anemia, another reason those with arthritis should be very
suspicious of anemia, since supplimental iron will make the anemia (and
arthritis) _much worse_.

If you would like more info about how HC, or how it relates to arthritis, 
please contact [the Foundation.]...

------------------------------

>From: Linda Nicholas    lmn@med.unc.edu

Actually, if you are anemic, you should have certain tests (total iron
binding capacity, ferritin, transferrin, serum iron, serum folate and B12
levels) done to determine the cause of the anemia (iron deficiency, folate
deficiency, B12 deficiency, anemia of chronic disease). If you'er on
NSAIDs you could be anemic because you're losing blood and don't
realize it.  This work-up is important because the different types of
anemia require different treatments.  As Sjanna said, many of us on MTX
take folic acid (or folate) to counteract some of the side effects of MTX
while still allowing it to work.  If you're not on MTX or, if you are and
your hemoglobin drops much, you need to have things checked  to see what's
going on.  Taking large doses of folic acid can actually mask signs of a
vitamin B12 deficiency, which can cause serious problems.  That's why you
need a prescription to buy the 1 mg tabs.


------------------------------

>From: Stefan C E Andersson    etxscea@aom.ericsson.se

I have had P since 1978 and PA since 1983 (app.). Cortisone for the skin
and Naprosyn for my joints was OK but I got worse for every year. In 87 I
spent some time in hospital and have to suspend my studies. Started
Methotrexate in 88 and have been on it since. I think it has helped me a
lot and without sideeffects (that I know of).

The last two years I have used Daivonex for my skin. It is absolutelly
wonderful and last spring I became completely spotless *ONLY* using this
product. No sunning or UVB or anything. You have to use it *every day*,
not 5 times a week or so. If you can get your hands on it, *test it*.
It's a medecine, no scam, or health food store product and I'm not paid
by the manufacturer ;-) Just think it's great and it has helped me a lot.
*COMMERCIAL MODE = OFF*

------------------------------

>From: John Horvath    jhorvath@raven.ultranet.com


>Does anyone have any info on the best way to combine this with
>Temovate ?

 My dermitologist said that it works best with some other treatment
and that for some people, the sun and outdoors might be all that
is needed. I've been using Temovate regularly and stopped when 
I started with Dovonex. I had been getting some skin thinning from the
Temovate, and am happy without it for these few weeks. 
 To combine any oniments, you can just mix a small amount of them
together right on the site or in a small container. Temovate also
comes in a liquid (for scalp treatment, unlike Dovonex which currently
only comes in an oniment, sigh).
 
obligatory arthritis comment: Even though Dovonex is a local topical
treatment, I'm also feeling very optomistic about things and hope
that just feeling good about skin conditions will have a positive
effect on my PA. 

