Imuran - high cancer risk for me
 

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

I want to know everything there is to know. Thanks.

Me too!! I hate this disease and I read everyday on this board. I have a copy of Dr Howard's book on MG that I can email you, if you send me a PM with your email address.
Mike

The doc wants to take me off of Mestinon to try the Imuran, but I'm afraid that I won't be able to breath without without it. If something is working then why try something else to establish a base line? I may not be able to physically do things I used to but if I can't breath none of that matters. I don't know how Imuran works or if it will help with breathing, but I'm afraid of trying something that might end up disastrous, especially with my family history. Maybe I should talk to the doctor about a back up plan.

I think that all immuno-suppressants will increase the chance of cancer as well as infectious diseases by the very nature of what they are. They decrease your immune system's response to those things. They also decrease your immune system's attack on your neuromuscular junction which is what you want.

I agree that I would be scared to totally give up the mestinon cold turkey. I would at least keep some on hand in case things get bad.

I imagine that your doctor hopes that the immuran will make it so that you don't need the mestinon.