A Psoriatic Arthritis FAQ

Here are some other sites that deal with psoriatic arthritis...

National Psoriasis Foundation

American College of Rheumetology

ArthritisNet

"I am not a doctor and can't really help people with psoriatic arthritis other than making this FAQ available. This contains everything I know about it, and some of it is probably wrong and out of date. A lot of people send me e-mail asking for comments on their condition, and I can't really offer much other than my sympathy and wishes for better health. I'll certainly try to answer questions, but a good doctor is really what you need."

UPDATE: Years ago, I figured that this FAQ would fade into obscurity as more and more info flooded the Internet.  There is certainly better information than is documented here.  What I've found is that this document has helped people get a "gut level" sense for what PA is all about, and there don't appear to be many other sources like it.  I'm glad people find this info useful.

As for myself, my own PA has fluctuated over time, sometimes almost disappearing.  Overall, it's much better than it was in the early 1990s.  I think the Sulfasalazine made a big difference, but I'm really not sure.  Overall I consider myself lucky.

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.

>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 1995

I'm going to write down what I've learned over the last 5 years from having it. There are probably 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.  It seems like you need to take them just to keep things from getting worse. I'm currently taking Tolectin (Tolmetin) and Sulfasalazine (Azulfidine) 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). When you take methotrexate, at one time, 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 in lots of cases.

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. 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 get somewhat better. 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 in the USA. 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.

[This is some newer info from March 1999]

You may want to add posts about the new medications, Enbrel and Arava. I am on Arava for the PA. Works better then the Mtx for me anyway. I am not using anything for the P at the moment because I want to see if the Arava helps that also. So far I have not seen any changes, which is good since it is not increasing, but it is not decreasing either.

>From: barbara cermak baedke 1995

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.

>From: Cheri N. Utt 1995

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 1995

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 1995

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 1995

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 1995

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!

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 1995

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 1995

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.

>From: Rick Holt 1995

....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 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....

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....

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.

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 1995

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.  This is not true for many people, from what I hear. 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 1996

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 1996

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 1995

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.

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.

[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.

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

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 1995

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.

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 1995

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.

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 1995

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 1995

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.

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 1995

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 1995
and: Debsusan 1995

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

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 1995

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.

>From: Rick Holt 1995

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.

>From: Sjanna Johnston 1995

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.

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 1995

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

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 1995

[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 1995

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 1995

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 H 1995

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

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.