Posted by Sheila on March 06, 1999 at 14:22:58:
In Reply to: Tegison posted by chris on March 06, 1999 at 13:44:24:
Hi Chris,
I have my own thoughts on why Roche took Tegison off the market, (will mention later) but I was told it was due to the way the body metabolises the drug. It stays too long in the body, compared to the shorter time Soriatane stays in the body. They didn't like the side effects - long term.
I was told 6 years ago by a pharmacist that they were going to discontinue it. I called Roche and asked about this and was told that they were working on a replacement drug and wouldn't pull it off the market until then. They weren't prescribing it unless absolutely necessary and were then only allowing longtime users who HAD to have it to stay on it.
In May of 1979 I was living in Salt Lake City, Utah and got into a 'study' at the Univ. of Utah Med Center with Dr. Gerald Krueger. The drug that was being studied was Tegison. I was on Tegison - without a break, from that time until it was replaced by Soriatane. I have a very rare form of Psoriasis. It is Pustular Psoriasis on the hands and feet. I've had it since I was 9 yrs old. I am now 43. That is another long incredible story that I won't take the time to bore you with now.
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. I didn't blister (the pustules) anymore. I didn't have to crawl on my knees to get around 2 weeks a month. I had two small children at that time - very hard! My disease didn't go away, but was more managelable. I had only minor side effects, nothing bad. My lab work and X-rays were always great. I was monitored and watched. Whenever I missed a dose, boy did I know it the next day, my skin was different. If I took too much, I peeled very very badly and if I didn't take enough, I blistered. After the study ended (7 yrs later) I was then allowed to use combination therapies. Different cortisones used to help and playing iwtht he doseage.
No one really wanted me to stay on it, but I was allowed because I had no other options. Then, last year it was pulled. I was devestated. I had an extremely horrible reaction to the change. It was only available at first in 25mg and I needed about 35mg a day. If I took 50, I pealed so bad, if I took 25, I blistered, it was so hard to regulate it, finally we did when we found there were 10 mg available. My hands and feet completely peeled 5 times in as many weeks. I was in awful pain. 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. I was sent to a Psoriasis specialist at UCI in Calif. (I live in CA) and he said my only options were Methatrexate (not spelled right) or PUVA. He said I MUST give my body a rest from the drugs.
I didn't want to - I was deathly afraid of being crippled again by the blisters. 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.
Prior to the Tegison, I had PUVA treatments, they did nothing to help me. Then 20 yrs later, (last year) I ended up with all three types of Skin Cancers. I have never been a sun worshipper. My doctor said the pathologist said it was due to the PUVA 20 yrs ago. I had squamous and basal cell carcinomas on my hand and melanoma on my leg. Last year was a tough one, I was cut 10 times.
So, after all that, when UCI said I needed PUVA I argued - he said I didn't have enough to cause those cancers. How do they know? So, now I am starting my 4th month of PUVA. And 4 different doc's (included UCI) said that I am putting myself at risk of more skin cancers, but that the risk is worth it -= they are afraid soriatane (and Tegison use) will shorten my life. They don't know the longterm side effects. I really don't want more skin cancers either. My doctor and I don't see any improvement so far with PUVA, but she says I have to try longer. I hate it and it is an inconvienence, it costs me $100 per month for red sore painful hands. My life is now in a mess - I can't do much with my hands, they peel and are raw and sore. They lowered the dose, but it doesn't help. I'm waiting on word if I have to continue. I don't want to.
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.
Sheila