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Social Security Disability Denied
Christine W.

Hi Ed:  Well, I guess I should say thank you again because I just thought  P was something that happened to my hands and feet. I now know I really hate this stuff, Psoriasis!   

I have to cut my fingernails down to pop the pustules/papules of gross liquid underneath, which swell my fingertips so much they barely fit on these keys!

I have a history of being mis- or under-diagnosed and being that I'm thirty now the docs can't seem to take the leap to say “Yes you are all f'd up and a mess and good luck getting better without chemo!”

I don't pretend I take good care of myself.  Self treating with A&D — so non-effective, actually aggravating it — yet I can move!

Anyway SS denied me disability and I’m waiting for the results of my appeal hearing. I wish they'd send me back to the doc, boy have I flared.

Anyway, thanks again and wish me luck that I don't just explode! –Christine W.

*****

Ed’s Response:  If you’re the Christine W. who wrote to me in ’99 — After 24 Years It’s the End of Her Rope — I’m pleased to learn, today, that there was some yardage left in your rope after all! 

Given your description of your version of P (which sounds awful) it’s no wonder you’re exasperated with A&D Ointment. 

I reviewed my ’99 response to your email, at which time I was just starting my first course of methotrexate after years of swearing I would never take the “dangerous systemics.”  Are those the meds — methotrexate (MTX) and cyclosporine — that you are referring to here as chemo?  If so, you’re correct in understanding they’re a world apart from A&D Ointment.

I’m also wondering if social security required a briefing about your treatment history?  (I’m totally ignorant of the process.)  You wrote, “I wish they’d send me back to the doc.”  If you were awarded funds, are some of them earmarked in this way?  (I.e., do they pay a doctor directly, as in insurer would?)  I ask these questions because I imagine they would recommend the systemics before “giving up” on your ability to return to a normal existence.

Since last we corresponded, Christine, I’ve been on two courses of MTX and one course of cyclosporine and, now, I’m trying Enbrel.  The MTX stopped my P arthritis and cleared about 85% of my plaque P.  I was taking a relatively strong dosage (25 mgs weekly — 30 mgs is the recommended max) for about a year and my derm wanted me to stop, so I switched to cyclosporine.  On that systemic, my P arthritis did not return and my skin cleared completely.  For many months I re-experienced life without psoriasis.  Unfortunately, at about the year mark the cyclosporine started to elevate my blood pressure, so the derm wanted me off it, too.  I negotiated a switch back to MTX.  A few months into my second MTX course I had a liver biopsy, which I survived quite nicely and fear no more.  However, the second course of MTX did not work as well as the first and some 20% of my plaque P has returned.  This was my state when, three months ago, my name came up on the waiting list for the new drug Enbrel which has, so far, had no perceivable effect on my P — but nor has it gotten worse.  I bore you with all this to make a point.

For debilitating P — and, per your description, I have no problem thinking yours is debilitating — I no longer hesitate to tell people they should look into the systemics — your chemo.  So long as you are willing to abide by the therapy stipulations (e.g., no alcohol while taking MTX...), and you make regular visits to the doctor, and blood work-ups are a part of those visits, I do not believe MTX or cyclosporine are to be shunned.

Yes, we’ve heard from people at this site who have encountered serious problems after years of taking these drugs, but perhaps, irrespective of side effects, “many years” should not be the time frame for treatment.  Despite the fact that this is my fourth year on systemics, I’ve not been on any one of these drugs for more than 12 contiguous months.  Maybe that’s important.  I’m not sure.

Soriatane is another systemic option I haven’t tried.  If you’re planning on having more children soon, this might not be the choice for you.  I mention it as something else to discuss with a derm. 

Anyway, I’m glad to know your rope is longer than you once surmised, Christine.  You are hanging in there, but I wish it didn’t have to be so precipitously!

Stay in touch.  -Ed

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