December, '99 | Briefing | Mail | Don't Say This | Articles | Other Places | Archives | Send Mail | Ed Dewke | Legal Stuff

100% Effected and on Cyclosporine Now
from Pat

It was good to find your web site and I have enjoyed being able to laugh at some of your comments. It made me wonder what my attitude about my psoriasis is. To be honest with you, I am still really not sure. After 34 years and no complete remission in all that time, I am past getting upset about it and have learned to live with it. I've not given up hope that one day a cure will be found. Since being connected to the Internet and reading about all the research going on I do believe in the next few years something wonderful is likely to happen.

My P started 34 years ago this month when I emigrated from the U.K. to Australia to meet up with my boyfriend who came out from the U.K. 10 months before me. I was a few days short of being 18, did not know anyone else in Australia and all the arrangements had been made for us to get married in December. About two weeks after arriving here a small spot started on my forehead and it just spread and spread. I should add that I did get married and have happily stayed that way for 34 years next month.

As I have only just found your site, I have probably missed your reasons for being reluctant to take Methotrexate. I've heard many others say they would never take such a dangerous drug. All I can say is that if your P is bad enough and nothing else works you're likely to come round to try anything.

I started on Methotrexate in 1973 when, believe me, it was not a popular drug for psoriasis. I had finished having my family and was a terrible mess, my body was 100% covered with plaque P. Along the way I lost most of my hair because my scalp was so badly affected. I had a liver biopsy before I started Methotrexate and then had 8 more: one each year I was on this medicine. Unfortunately, the eighth biopsy showed my liver cells changing and that was the end of the only drug therapy that ever managed to control my P. I even put up with 8 years of vomiting and constantly feeling sick but considered it worth it.

Three months after stopping the Methotrexate I was in hospital with severe psoriatic arthritis (PA). I went to bed one night with no symptoms and woke the next morning riddled with it. Obviously the Methotrexate had kept the PA symptoms at bay. While I was in hospital I began receiving gold injections for my PA. These work for me and I have been receiving the injections for 16 years, now, with no side effects..

I then spent years trying other treatments: UVB, UVA (enough to light up the whole of Sydney, Australia), Imuran, Tigason (we spell it with an i not an e), Hydrea .... I even had another go at Methotrexate after yet another liver biopsy showed my liver cells had returned to normal, but even that didn't work the second time around. I then started going into hospital with the Dithronal treatment. This kept me clear the first time for about 1 year, but then over the next 6 years I stayed clear for progressively shorter periods of time.

In desperation my skin specialist put me on Cyclosporine, which I have now been on for 3 years. I was told initially I would only be on it for a few months, but when they tried to reduce the dosage I just broke out bad again. Cyclosporine is not perfect by any means and I am still quite spotty but the spots don't hurt most of the time and not every new spot turns into a big spot. Some spots actually disappear. However, this treatment appears not to work from the neck up. I have also been able to stop the gold injections as Cyclosporine quiets the psoriatic arthritis.

I have always told my husband I feel I could write a book on P. But, for the time being I hope my story reassures you that cyclosporine is out there for you if other things don't work. Regards, -Pat


Ed's Response: Your case, Pat, is a strong indication that change of climate and/or stress associated with relocation can be strong P triggers. Your case is also humbling for me and, no doubt, a lot of us here at FlakeHQ.

Your observations regarding reasons not to take Methotrexate (MTX) also ring true. The drug is only as odious as your flaking is tolerable. We may all have different thresholds for embracing the last resort, but when that threshold is reached, most of us are probably poised for embracing. I was ready to try anything. Had the rheumy and derm said "cyclosporine," I'd be taking it today—but they said "Methotrexate" and, so, here I am. And so far, so good. It has not completely cleared me, but it's only been a few months.

And I am very grateful that cyclosporine is out there, and awaits me should I need it. Stay in touch, Pat, and enjoy your Summer in Oz. -Ed

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