I'm going to the doctors on Monday and he wants to put me on Imuran. I read a bunch of stuff about how it can cause cancer. What has me worried is that my father and his father had acute myeloid leukemia and died from it. My dad's sister had breast cancer and died from it. My mom had cancer in the uterus, and hysterectomy was a success, her mom had colon cancer and died from it. My sister has non hodgkins lymphoma and is still living, and another sister has breast cancer and is going through the process of getting a mastectomy. My daughter had cancer of the cervix which was operated on successfully.

There's just too much cancer in my family that I think it will be unwise to take Imuran. I don't know if there are any other immuno-suppressants out there that don't have a risk of cancer. If you know of any let me know and I'll let my doctor know.

It's one of those choices my Dr told me about. You are damned if you do and damned if you don't. Heck life it's self is a huge risk. I went through the same thing. I had colon cancer, got that taken care of then started Imuran about 2 years later. I stayed on Imuran for 1 year and it did nothing but made me sick as hell. I lost 35 pounds. I am now on Cellcept and doing much better. That said Cellcept has the same risks. Since I went on Imuran I have had 4 skin cancers removed. I have my colon checked real regular and see a skin Dr very regular.

All this said I want to say that Imuran may not make you sick or that Cellcept will help you. All these treatments affect each of us differently. It took us 2 1/2 years to find what works for me. I told my wife when this crazy disease hit me 2 1/2 years ago that this was going to be one big experiment. That's why they call it "praticing medicine".

Good luck with your treatment,
Mike

Mike,
All that being said, is the cellcept worth the risk? Is it helping?

Yes Cellcept has helped me along with 20mg of prednisone and mestinon. I don't think mestinon helps me but I take it inspite of the stomach issues. It took us 2 1/2 years to figure out what works. I haven't had IVIG in over 4 months but that said again I don't think IVIG has ever helped me. All this being said each MG patient has to find what works for them. Feel free to ask any questions you may have. I may have to ask the boss (wife) she knows way more about MG than I do. She never lets me get a treatment without her approval. After 2 1/2 years we are still learning. I feel better now than in a long time. I would guess I'm about 80% of normal. I have learned a lot during this time.
I wish you the best with your treatment
Mike

My neurologist already mentioned cellcept and I suspect he is going to pull that rabbit out of his hat soon.

What are the side effects? (Except the obvious things like making you die of cancer.)

How long did it take to help?

How expensive is it?

Southblues I hit my knees every morning and thank God for my good fortune. I am retired military so in 2 1/2 years of MG I have not spent one penny. Last year alone my IVIG treatments were over $500,000. I can't really help you with how much it costs.

It took about 8 months for the Cellcept to kick in. As for side effects I haven't noticed any. I think my dose is 2500 a day. When I was getting IVIG there was a lady there that was doing good on Cellcept but after 2 years it quit. She is now on the next step up. If you want to know what that is I'll find out for you.
Mike

Quandry, Immunosuppression is a huge risk for those with such a high incidence of cancer in their family, especially with family members such as parents or siblings with cancer.

Mike, Life is a huge risk but taking a cancer risk when you don't have to, especially in a situation like Quandry's, is playing with fire. I know that some patients, with MG or lupus or any other autoimmune disease, often don't have a choice because they wouldn't be alive otherwise. I hope you don't ever get cancer.

Quandry, You can always ask to be referred to a hematologist for a 2nd opinion on what they think about your cancer risks. In fact, that might be a very good idea given your family's history. Sometimes it helps to talk to the cancer experts about it all. Hematologists are trained as oncologists.

I hope you can find a treatment that works for you.

Annie

I went the doctors today and discussed my fears with him about taking Imuran and he said he doesn't want to give it to me if I feel uncomfortable about taking it. He said he's worried that the Mestinon may not be as affective if I keep taking it, and he also gave me a list of other immuno-suppressants to look at to see if I'd be more willing to take them instead. They are as follows: Cyclosporine, Cellcept, and 6-Mercapto Purine. So right now, he's going to keep me on the Mestinon. Does Mestinon become less effective over time?