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New to (and Frightened About) PA
from Jackie R.

Hi Ed.  I'm new to all this, and so too to your web site. But I'm scaring myself to death reading the stories about PA that people publish at your site and post on psoriasis boards on the Web. I thought maybe you could give me some perspective. I'll tell you my story, and try to keep it short.

I'm 53 and married for the second time, to an orthopedic surgeon for 2 1/2 years, during which I've become an ortho museum! Interestingly, I was married for 25 years to a man who had pretty bad plaque psoriasis, and I now realize, undiagnosed PA as well.

I have had little pustules break out in isolation on my hands for some years, but they were never there when I got to the doctor, so no diagnosis. I would occasionally get an extremely itchy rash on the tops of my toes that would get dry and break open. Dermatologist said it was eczema, but I should have known better, because my ex's meds worked on it.

Fast forward: April 1999 I had abdominal surgery, then in April 2000 a reconstructed ACL (knee ligament). By fall, we realized the new ACL (a cadaver graft) was no longer functional. In October, I had it redone with a stabilizing lateral construction (something you don't normally have) by the same doc, an associate of my husband's and ACL specialist, who was amazed to find it healthy but elongated to the point of not working. That drove everyone crazy, and I hear I may be the topic of a research article — ACL Surgery on an undiagnosed case of PA.

Fast forward again. A friend talks me into acrylic nails, which I keep for the next year, then get rid of when I decide to take a printmaking course in September 2001. I get a couple of pustules, but think nothing of it. Then a few more, and then a small patch of red develops by October. The black ink, but only the black ink, seems to quiet the patch from time to time, and some Lac-Hydrin we have in the house also helps.

Another leap to February 2002. My left hip, which has been doing some odd things, suddenly gets so sore that I can't work in the print studio very much. My husband diagnoses bursitis, even though he thinks it's strange, and gives me a steroid injection. It goes away, only to return in both hips. More injections, and now I really have my husband's attention. We go to New Orleans for a conference, and he goes to visit his son while I come home alone — crippled. I can walk only enough to feed myself, so my husband sends me to a colleague for another injection. When he gets home, we decide I should see a PT, who is equally mystified — sometimes my hips are fine, sometimes I can hardly walk.

In May, both of my knees swelled so that I couldn't kneel at all, and I saw the ACL surgeon with my husband in tow — two OS's and they were baffled. My knees were hot. I had x-rays and MRI's — nothing remarkable EXCEPT the lateral construction added to my last ACL reconstruction had some calcification on it, something neither of these surgeons had ever seen.

 In October 2002, I get the diagnosis of pustular psoriasis on 1/4 of my right palm, and I immediately make an appointment with a rheumatologist — I remember my Dad saying he had psoriatic arthritis (he's a BSer, so I never believed him, because he had no lesions, only pitted nails) and he's a heart transplant survivor of 12 years, taking cyclosporine, which would account for the fact that he's not had a recurrence. Had to wait ‘til January for that appointment.

January 2003: Doc hears my history and looks at my x-rays — calcification on the hip bursa, fluid on the knees, yadayadayada — psoriatic arthritis (PA). Only one joint has degeneration, though — my left hip. And he wants me to go on 12.5 MTX injection and 200, now 400mg Plaquenil right away — of course, with a doctor husband, I am the perfect candidate. Right up until the day I took the first doses, I said I wouldn't, but my husband told me just enough about arthritis to make me more scared of it than of the meds.

Within 2 weeks my knees were normal, and my hips pain-free. I'm at 5 weeks now, and with PUVA and Dovonex on top of everything, my hand is about 60% better — still red, still a few pustules to pop every day (can't leave them, we tried that and they get infected and painful). The side effects are either controllable, tolerable, or gone for good after a day or two — except a Plaquenil rash (only on my P hand!) which gave way to Zyrtec.

However, my right shoulder is giving me some trouble, my feet ache and have really sore tendon spots, and today my hands are feeling a little puffy and achy.

I'm frankly scared to death. Especially when I read some of the stories out there. I know I'm fantastically lucky with this disease so far, but I also know I have symmetric PA, and that it's breaking through the drugs. I'm only 53, and was looking forward to another 40 years, cause that's how long my family lives. Now I'm afraid I'll either be in a wheelchair in 10 years, or dead from the drugs. Every day I thank my lucky stars that we bought long-term care insurance before I was diagnosed — can you believe that I'm doing that?

My husband has only seen 3 patients with PA in 25 years, so he's learning with me. I'm sure, though, that neither he nor the rheumatologist are telling me all that they know about arthritis.

 I want to know if what I'm reading on the internet is a self-selected group of the worst case scenarios or a random sample of what's out there for me. Can you help? –Jackie


Ed’s Response:  I don’t know if I can help, Jackie, but I can share what I’ve learned, experienced and think.  But first, I’m flabbergasted that the methotrexate has worked so well so fast for you.  Perhaps that’s an attribute of the injections versus the oral.  It seemed MTX took forever to improve me, back when I started my first course on the drug, but I was taking 25 mgs per week orally.

There’s no sense being scared to death about PA, Jackie, because no one knows — including your army of doctors — how your version of the disease is going to play out.  You’re not scared to death about getting killed in an automobile accident tomorrow; well no one can tell you the odds of becoming disabled from PA — in your particular case — are any worse than the traffic accident odds.

And don’t be afraid of MTX, either.  Follow the instructions, get your blood work done regularly, submit to the liver biopsy when it’s time, and stop taking MTX when indications of liver damage compels you to.  The chances are, sooner or later, you will be compelled to stop taking MTX, but if you do everything you’re supposed to do while you’re on the drug, you’ll have plenty of notice when that time comes before the damage becomes irreversible.

Talk to your rheumatologist about Enbrel.  It’s supposed to be less toxic than MTX and just as effective against the arthritis.  I’ve been taking it for 3 months now and there has been no joint pain.  My complaint is the skin lesions haven’t improved, yet.

Now that I’ve talked you out of being scared to death, let’s just take a quick look at the bad news about PA, which is twofold.  First, if your destiny is to have the truly and deeply degenerative type of PA, sooner or later you will need more than what you can get out of MTX.  (I believe the jury is still out on Enbrel’s long-term effectiveness against tissue degeneration, but I may be mistaken.)  Secondly, I’ve read that MTX can mask continuing degeneration, meaning you might still be getting worse but aren’t aware of it right away. 

The way you fight either of these possibilities is to NOT become complacent, make yourself and your rheumy remain ever-vigilant.  Keep regular appointments, do the full diagnostic exam routinely even if you’re not hurting.

And for goodness’ sake, please tell your rheumy to pull no punches with you, give it to you straight and completely.  You are paying to learn what s/he knows, after all.

Psoriatic arthritis is so frequently misdiagnosed, and represented by such a small population relative to the other arthritics out there, many orthopedists and rheumies are in the dark.  This is especially true when PA manifests without skin psoriasis to tip off the docs. 

So ... enjoy the relief MTX is providing, but don’t become complacent.  Don’t fret about the next thing you’ll have to do because there will be “a next thing” (you won’t be on MTX forever), but the next thing will probably work, too.

Keep us apprized.  -Ed

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