Posted by Charles Eichhorn on March 06, 1999 at 15:59:23:
In Reply to: Re: Tegison and Soriatane - Pustular Psoriasis posted by Sheila on March 06, 1999 at 14:22:58:
Sheila, you said it all for me.
I have a moderate form of ichthyosis that slips between the cracks diagnostically, but that responded amazingly well to Tegison. Soriatane has been a great disappointment. I was assured that the molecular tweak was just going to affect the long term storage in fat, but there MUST be something else going on. I am sore all over, can't smile or my lips crack and bleed, my hands are peeling like crazy, and dosage adjustment doesn't seem to help. It's like an entirely different drug! (That doesn't work as well.)
Charly E
SNIP
: That drug, Tegison was a God-send to me. I was able to live a more 'normal' life because of it. Nothing else ever worked for me.
SNIP
: The annoying side effect with Tegison are worse with Soriatane. Dry nose, eyes, ears, mouth. My hands and feet aren't near as good now. I get more blisters and peel sometimes uncontrollably.
SNIP
:I made a choice 20 yrs ago that if Tegison were to somehow shorten my life, so what, the quality of my life was so much better.
SNIP
: What I really want it Tegison back. I did so much better on it. I hate it that we, the patients, have no say so in drugs being taken away. Soriatane is not a suitable substitute for Tegison, at least not for me. I would love to know what other in my situation think.
: Sorry, I went on and on and gave you more that you asked for. HOpe you don't mind.
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: Sheila