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How Did Your PA Get Started?
from Jill L.

Ed: I was glad to find your site!  I've been all over the net for several years in an attempt to find info regarding these dreaded illnesses and had never come upon your site until I visited about.com.  I've enjoyed what I've seen so far and wanted to contribute in some way.  I've been a psoriatic since I was about 21 and have had PA for several years, but was only diagnosed in 2001, after having to quit my job and basically losing all of my “friends.”  I don't know what I'd have done if I had been the sole breadwinner. 

It's been a long, hard ride from the first day I became ill with PA to here, but with church and a little change in attitude, I'm beginning to recover some normalcy of life again.  I've taken/applied/eaten and used almost everything available.  It seems I've found the greatest relief with a combination treatment of Cyclosporine, Methotrexate and Oxycontin.  It still isn't GREAT, but it's manageable now most days.

I'm still previewing your site, but would be interested in knowing what your symptoms were when you first became ill with the arthritis form of P.  I spent about ten years trying to hide the skin, which only made it worse and did it ever itch.  I've spent the past 6 or 8 years not caring who sees it because it gets less aggravating when clothing doesn't touch it.  I've had try to overcome the looks and whispers.  Before the medications for the arthritis form, my legs and arms were about 80%, as well as having it on my face and mildly in my hair.  I'm still praying and hoping my son will escape this, although he was diagnosed with it in his scalp this year.

Anyway, just wanted to say hello and thanks.  Hope this isn't too long or too much info!  Sincerely, Jill L.


Ed’s Response:  Too much info?  No way, Jill!  You’re welcome and thank you for the email.

About a year before I was diagnosed with PA I suffered what we learned, much later, was a “ruptured varicosity” — sharp pain behind my right knee followed by a huge bruise a day or so later on the bottom of my right foot!  For days the knee was extremely painful and swollen.  I learned later that the “bruise” on my foot was really blood from the knee area pooling under my foot after making it’s way between muscles and tissues under gravity’s force to the lowest possible point in my body.  The foot never hurt; that’s what was so puzzling. 

Anyway, this “ruptured varicosity” was a broken vessel deep inside and behind my knee.  I was told it wasn’t rare, some people had a proclivity for such things, and it was pretty much a grin-and-bear-it situation for me.

Therefore, about a year later, when my knee started to throb terribly and swelled to a size somewhere between a softball and a basketball — in truth, some of my pants wouldn’t fit! — I just assumed “ruptured varicosity” and tried to endure for many weeks.  (I should have second-guessed myself when there was no evidence of internal bleeding this time ... but I didn’t, at least not for several weeks.)

My GP drained the right knee several times.  One time the pressure was so great, he could not stem the flow of fluid through the hypo while he was trying to change the receptacle:  I literally shot swollen-knee-juice all over him, his nurse and his exam room.  (The last time anything similar had happened was when I’d peed on my pediatrician — age <1 year.)

It became obvious that, unless something more drastic was done, I’d be in for routine knee drainings without an end in sight, so eventually my GP sent me to a rheumy (rheumatologist) who, after listening to my history and cursorily examining my skin, diagnosed the knee condition as psoriatic arthritis.

By that time I had experienced days when I literally could not drive because the pain interfered with pedal operation.  For me, that’s a practical disability.  I was beginning to panic.  For many months I was unable to sleep through the night because the pain woke me.  I used Vioxx for pain.  I was never prescribed Oxycontin (a narcotic analgesic).

Coincidentally, my skin P was flaring mightily at the same time.  I was in my seventh or eighth year of almost continual use of topical corticosteroids (varying potencies) and it was all too obvious that they were losing the battle.  Just a few weeks before I visited the rheumy my derm had recommended I reconsider Methotrexate.  I was still reluctant.  Then, when I heard the rheumy make the same recommendation I finally caved in.

It took several months, but MTX first stopped my PA symptoms and, somewhat later, reduced my skin lesions by about 80%.  I used MTX for about a year the first time. 

Even after switching to Cyclosporine, I remained PA-free (or, at least, “pain”-free).  I was on Cyclo for nearly a year and, now, have been back on MTX for almost a year and the PA remains at bay.  Knock on wood. 

I have it in my hands now, but not so debilitating.  I get the “sausage digits,” which ache and hurt if they're squeezed, jammed or otherwise abused.  But it’s rarely so bad that my typing or other hand-work is compromised.  I’ve also had “sausage digits” on my toes but, unless I stub them, they don’t bother me.

Well, that’s my PA story.  Compared to many others here, my PA has been mild and sparing.  At the moment, I’m noticing the right knee again and a few digits are swollen, and these are signs I interpret to mean my PA is angry about being subdued for this length of time and eager to bust out.  I can feel it fighting to shake off the restraints of the MTX.  I’m on the Enbrel waiting list and, assuming they ever get to me and my insurance company is cooperative, I have high hopes that this will renew and maintain my remission — both PA and skin P.

But whatever happens, we all know I won’t be quiet about it.  <wink>

Stay in touch, Jill.  -Ed

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