psoriatic arthritis in MA

[nrasher]

Hello Everyone,

These posts about psoriatic arthritis have me confused. It seems as if people would rather delay going to the rheumy. I don't get it! Is the treatment horrible?(I've done 2 courses of MTX Yuck!) Does it have to be maintained forever?(Fortunately for me most of the heavy duty treatments clear me up for a while) When the psoriasis symptoms abate does the psoriatic arthritis as well??? The reason I ask these questions is because I'm fairly certain I have it (nails are a mess, fatigue, joint pain,visible lumps developing on the joints of a couple of my fingers, and pain in my lower back)I have always ascribed a lot of this to a very active lifestyle (running, riding, climbing,)But now I'm not so sure.So-What's up with not wanting to go to the doctor?
Nick
P.S.Its probably a litle silly but I won't capitalize psoriasis and I won't abbreviate it as I don't want to get to chummy with it or give it to much importance
P.P.S.A few times when people have made comments about my skin at the start of a road race I tell them to be careful as the dreaded "elohssa" disease is contagious.This usually gets me a little more room a the start line.Oh and so far I've always beat these clowns and I'm not that fast they're just half fast

[MikeK]

Hi Nick.

I'm one of those people who keep putting off going to a rhemy. In my case, it's not because I don't want to go or because I think the treatment is going to be a problem. It's because I don't think the problem is severe enough. My derm is obviously concerned. (I changed the subject.) My nails are a mess. I have sporadic problems with both knees. My body is trying to tell me something. I should do something about it. I'm probably in denial, but at this point I honestly feel that my problems are so minor that it would be like crying wolf. I did take a first step this morning however. I just bookmarked the url for The Hospital for Joint Diseases in New York. I now have to work my way up to calling their patient referral number.

Mike

[lapradef]

Nick --

No one on this board is recommending that anyone forgo any medical treatment that may be appropriate for them. I don't know whether the treatments are "horrible" or not, but the more advanced ones are very powerful. Killing T-cells, surpressing the immune system, using potent steroids, and exposing oneself to ultraviolet light are not things to be undertaken lightly.

My wife, after arthroscopic sugery on both knees and replacement of both hips, was put on a course of MTX (along with a handful of other pills) and has done marvelously well. The alternative was a lifetime of disability, but MTX was developed as a cancer drug. In a sense, it's a form of chemotherapy. And, yes, as far as we know, it's forever, or at least as long as it works.

Guys like Mike and me probably are in denial, but we also are optimistic and hope to get some relief with safer alternatives. We may live to regret it, but right now it seems to be worth a try. I do plan to send a note to my wife's rheumy the next time she goes, just to see if he'd have the slightest interest in seeing me at this stage. I hope the answer is no.

Anyway -- whatever works for you. That's what's important.

GL

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[G.J.]

I avoid the rheumy because I don't believe there is any 'test' that shows that indeed you have PA. I would like to rule out everything else first before going on the meds (which yes, are for lifetime). If I am experiencing 'old age' (denial - I'm only 43) and perhaps osteoarthritis that can be treated with less severe remedies, I'd like to go that route. The words 'sudden onset' and 'irreversable damage' scare me though. Is there no positive test to prove PA? That would alleviate all my fears and let me deal with what the future holds.

[pvinik]

Nick:
I have had psoriatic arthritis for appx 10 years. At one point, I could not reach my toes to put on my socks. I have permanently lost motion in several of my toes. It was hard to put my shirts on because of the pain in my shoulders. You get the idea. When the pain gets bad enough, you will go see a doctor. I never succumbed to taking methotrexate although my rheumy suggested it. I have taken, celebrex, vioxx, azulfidine, etc trying to fight the pain. None of these seemed to help much. The only prescription I have gotten that really did anything was direct pain killers like percocet. Imagine that, pain medicine for pain. However, I have started taking glucosamine with chondroitin (gc) and a cod liver oil pill religiously. I take 3 gc in the AM and 3 in the PM and have been now for 4 months. My arthritis is 70%-80% better, which is to me is like being re-born. I have talked to several doctors about gc and some just plain say it is a hoax, others say "there might be something to it." Something in my metabolism could have changed and my improvement may have nothing to do with gc, but I would recommend that anyone with psoriatic arthritis try this regimen. Even though I exceed the recommended dose of gc, I am sure that it is not as bad for you as methotrexate and the other liver destroying prescriptions that are frequently used to treat this condition. The gc regimen takes 3-4 weeks to take effect.

[molly]

Hi (also from MA)
My daughter has pa, and I think that I have it too...My daughter's Rheumy suggested using glucosamine and chondroitin...My husband could hardly go up the stairs and our gp suggested (gc) Well, you should see him now...I have been taking it too and find it does help a lot...I hope that it will help anyone that is afraid of using the more potent drugs...I only use one a day and my husband uses two...I think you can use 3...
Take care,
Molly

[Shezzzz]

I have had PA and Rheumatoid Arthritis for almost 15 years...Without the Methotrexate...i would not be walking, running, working. I still have pain, still have really bad days...but the Methotrexate has helped me.

[AnneElizabeth]

Nick -
I probably started the parade of reluctance posts. My dilemma is that I know I have mild PA, but have been trained by years of HMO experiences to avoid wasting the time of specialists. I know that I don't need Enbrel or Methotrexate or anything more heavy duty than ibuprofen right now. I'm not as active as you are, but I'm no couch potato either. As a matter of fact, I've been dropping my few extra pounds pretty effectively lately - I figure that's a proactive way to treat any kind of arthritis. My diet - lots of salmon and sardines, everything else vegetarian, plus a half cup of walnuts every day - has been a huge help in improving my skin for many years. YMMV, we're all very different, and my P has always been moderate to mild. Chondroitin/glucosomine/etc. do absolutely nothing for me but empty my bank account.
However! Getting in to see a rheumy for the very first time when you do have a big problem can take months. I'm going in strictly to establish a patient relationship and probably to have an x-ray of my sacro-ileac joint done as a baseline. In this Mid-Western area, I'm likely to be told that I'm wasting the specialist's time. You're supposed to suffer adequately to be worthy of medical insurance (grin).
I get along ignoring the whole thing as much as possible. I hope the more severe cases among us can get to that point with the new drugs.
I love your starting line comment about your elbows. I often get away with people thinking I've had a terrible roller blading experience.
AnneE

[web63]

You guys are lucky not having to take anything.
Percociet.... candy!!!
All of 2002 Remicade, double dose every 6 weeks ($6300.00 per infusion) No good!
MTX... been on it for over 1 year. It worked at first, but has stopped. I am still on it, but now I have Enbrel.
THE BEST DRUG ON THE MARKET FOR PA!!!!!
In just 6 weeks, I am doing alot better.
I have not had a pain free day since Oct. 2000. You tell me you can just take the OTC candy with pain like that, and you are a better man than me.
I am thinking of going snow skiing next weekend. I have a Paintball tournament this weekend. I am either still on or have been on just about everything.
If all this sounds bad, I will be 40 the 25th of February.
YES, not even 40 and feel like I am 70.
I can only do these things because of Enbrel.
It has helped me regain my life back.
<E-mail me: pa@web63.com>
Thanks,
Scott in Atlanta, GA

[lapradef]

Scott -- Glad to hear that the Enbrel is doing the job for you. Don't assume that those of us taking OTC candy have ever experienced the pain that you have. But the rheumies (not to mention the insurers!) probably wouldn't even consider putting us on Enbrel at this point, much less pay for it.

Nick & Molly -- I was taking glucosamine condroitin (GC) when I developed the PA, so I certainly can't vouch for it as a preventative. On the other hand, I certainly don't blame it for the PA. I caught GC on a 2 for 1 sale today at a local drugstore and bought two bottles of triple stength, a total of 160 tabs. It's not cheap for an OTC, but it's certainly cheap compared to the more exotic stuff.

BTW, the recommended dosage is all the same, but if you take the regular, it's 6 tabs, double-strength 3 tabs, triple-strength 2 tabs daily. Seems to be a little cheaper in the triple-strength form, and far more convenient. So, I'll give it 80 days -- if I see no improvement, I'm out about $31. Big deal.

Apparently, it's not a total hoax. The only reason I was taking it in the first place was that a lot of the local docs were recommending it for all their "older" patients who had even the slightest ache or joint pain. Of course, docs get caught up in fads too, don't they?

GL

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[heps]

Re. Glucosamine: Here's my story on this..
My dog had a bad case of arthritis in her hip, she couldn't walk without real pain.
The Vet put her on Glucosamine Sulfate & she was then able to do most of the things normal dogs could do. While I was lifting her up & down the stairs I ruptured a disc & wasn't able to move out of my recliner. There I slept & ate for about a month or so.
The Ortho told me my spine was a mess & had a ruptured disc taboot. Needed a 5-1/2 surgery with a fusion to hopefully repair it. Well, I thought if Glucosamine was good enough for my dog, I will try it. I take Glucosamine Sulfate 500 Mg. three times a day & I now can walk not in a Marathon :) & be somewhat of a normal person; however, I am somewhat limited at times. What it does is, it replaces the synovial fluid that's between the joints. In my opinion, it is a God sent.