I've tried pred, immuran and currently cellcept. All to no avail. Unless you count hair loss, difficulty healing, trouble sleeping memory problems, ect. As working. I've just had blood work done to find out if the meds are causing these side effects. But even if they aren't, I'm still not feeling better on them. I'm tired of trying drug after drug of chemical cancer causing useless medications. I know I can refuse these meds, but I don't want my doc to think I don't want to get better. If you don't mind, I would love to hear why some of you are not taking them. I use mestinon and timespan and monthly IVIG, which kept on a strict schedule seem to be helping more and more.
Thanks in advance! I hope this finds you all strong and well.
Jess

Jess
I'm not sure I want to answer this, in fear of scaring other people. Everyone should be aware that these drugs affect each one of us differently. What works for one will not work for another or the effects are totally different. So please do not take this as something that will affect you the same way. I encourage everyone to try to get their life back as near normal as possible.

I have now been struggling with this disease for about 1 1/2 years. I was on in him Imuran for 12 months. While on Imuran I was very nauseous and lost 35 pound's. My Neuro tapered me off of Imuran in early November. I started on a low dose of prednisone and CellCept. When this occurred my Dr. apologized for leaving me on Imuran for 12 months but he wanted to be sure it was not working. He said that he knew it was making me very sick. When I started my new medications I was in like total remission for about six weeks. It was wonderful. Also during all this time I was getting ivig about every two months. I also take Mestinon the same as you. I believe the prednisone is causing me to not sleep properly and other minor side effects such as shaking. Thus far it is my opinion that the IVIG is helping me more than anything else. Currently I'm going through eight treatments to see if that works better than five. I am convinced that the IVIG stopped my double vision and not the medications.

My Neuro is very receptive to our ideas and thoughts. When he put me on Imuran he wanted me to take prednisone but my wife does not like prednisone so he agreed for me not to take it. I am currently on CellCept with 60 mg of prednisone. We decided to try the prednisone again. But my wife is not happy. My main thought is to fight this with every fiber of my body and soul. That little time of remission as inspired me to fight all. It convinced me that something will work.

All of this being said it is a personal decision for each individual how they want to deal with this disease. I am a pretty stubborn old man and don't give up easy. I pray that we all have more good days than bad days.
Mike

I have been getting infusions and have been taking cellcept, mestinon and reducing doses of pred for 3 years. The last year my condition is "stable". My neuro. And it's true to some extent. I am better but I still expierience the same muscle strenght fluxuations as we all do with very few good days.

At my last visit to my neuro I expressed I would like to start reduding the the amount of mestinon and cellcept I am taking because of the side affects. He cautioned me that if I did that and ending up getting worse, it would take me longer to get back to where I am now.

That scares me. So I will continue with my meds the way they are now and maybe later this year take another look at this but if i were in your position, with no improvement from the meds you are taking, I think I would be looking in another direction and maybe a new neuro. Good luck.

Tony

I personally think it is a very reasonable thought.
You have no response to treatment and yet have significant and bothersome side-effects. And all those medications have potential long-term side-effects.
why then keep on taking them?

Not all diseases and not all patients respond to all medications and forms of treatment. And there is no reason to think that at some point you will miraculously start responding to this treatment, if you have been taking it for a reasonable amount of time.

Ultimately, you have to do what your 'heart of hearts' tells you. And there is only one person that you need to please....that is you. Ideally your relationship with your doctor is open enough to discuss all the aspects of your treatment plan that you have noted.
But if you are truly concerned about your doctor having a negative reaction to such a discussion, do you think getting a second opinion / evaluation of your treatment plan might be of value? I don't know if it would be feasible or not...just a thought.

The main reason why I am not taking any drugs other than Mestinon is that my neuro doesn't want me to, tells me those drugs have worse side effects than what I am currently experiencing. He will only prescribe immunosuppressants and steroids for life threatening situations, at least that was my understanding in the beginning.

The secondary reason why I am only taking Mestinon, is that I am sensitive to drugs and I don't want to try the stronger drugs. With my experiencees in mind, I would most likely have the worst side effects. There is no way I am going to do anything to suggest to my neuro that I want to try stronger treatments. They scare me.

There is a third reason I suppose, for not considering IVIG for me. It is an expensive treatment. I don't have medical insurance and I have limited income and can't afford it. For me, more expensive treatments are out of the question except in an emergency.

I remember having a conversation about this with my neuro right after I received my diagnosis. He knows I don't want to take any drugs or receive any treatment unless absolutely necessary. I appreciate that he has only mentioned the other treatments available but hasn't tried to push me into trying any of them. I feel as if he has respected my choice and only insisted that I take Mestinon. He did also suggest I take an antidepressant which I refused.

I think that if the side effects are more than the positive effects from a drug, any doctor should agree if we want to stop taking the drug. I can only hope so anyway.

This decision is immensely personal. I don't mean so much that it's based on emotions, though those are relevant too, but that the factors are so many, and lots of them can only be understood by the person experiencing the disease.

Unlike DesertFlower, I'm not generally sensitive to drugs. I get no gastric effects from Mestinon. I don't notice any side-effects at all from the Imuran I'm taking. I know that every drug has its risks, but Imuran seemed, from my research, to be comparatively safe. There's an increased incidence of certain cancers associated with it, but the risk is small, and seems to be especially associated with inflammatory bowel disease. I'm taking a risk, but it seemed, given my situation, a reasonable risk to take.

Here's something else: I'm personally scared of getting other autoimmune diseases, like MS and rheumatoid arthritis. Maybe the Imuran will prevent those. It's a consideration.

The Imuran is not helping me so far. But because of my personal situation--what I need to do in life, the help I have, my personality (I am an introvert and never had a rip-roaring social life, and I never cared about athletic stuff)--and the relative lack of severity of my disease, I can afford to give it a long trial before trying something else or giving up on immunosuppressants altogether.

On the other hand, I'm not willing to try Prednisone yet. I don't have trouble breathing, and I don't have double vision. The side effects I expect Prednisone to give me are worse than the disease I have now.

I am making a decision based on what I know. My decisions so far have been reasonable. If they turn out to be wrong, they're only wrong because of things I couldn't have known--they were still sensible given what I had to work with. I find peace in that.

Abby