[BARBARA356]

The drugs have so many side effects. I am on immuran and I saw that you can get growths and cancer from taking it. If you don't take the drugs do you lose your ability to walk or die from strangulation one day?Sorry so bleak but just would like to know.

[Tbarney]

Barbara, yours is a question that I also wonder about. I have had a thymectomy and only take Mestinon. My neuro wants me to start Imuran or Cellcept. What I read about them scares me. What does happen if I don't take them?

[erinhermes]

Hi Barbara! Yes, the side effects stink, but you NEED them in order to keep your immune system in check - without them you can get very sick and have a crisis - something you do not want to experience.

You are not being bleak, just worried. I was very worried about taking Imuran as well, as it is a "chemo" drug, but there are side effects for everything - everything out there!

I've been on Imuran for months now and think it is finally kicking in! Granted, I have also had monthly IV IG for a while now - 5 months, I think, but I am FINALLY on the right road - the road to remission. It has not been ez. There have been times I have wanted to give up - due to the side effects, but my hubby and son need me up and around to take care of them. I NEED to be there to take care of them. They are my world.

You MAY only need to take them for a little while longer! Just think of it like that! You may go into remission very, very soon!
Don't EVER give up hope!

Some people only need Mestinon in order to function. I am not one of them, but you may be very, very soon!

Just for now keep taking them! Your dr wouldn't tell you to do so unless you needed them.

I have had every side effect from the pred - every side effect. The goal is to reduce the pred and only take Imuran/mestinon for the rest of my life. My neuro told me that I will prolly need pred for the rest of my life, but as long as I can walk, talk, breathe, etc, the side effects are WELL worth it (in my opinion).......

Hang in there! IT does get better!
Big hugs!
Erin

Originally Posted by BARBARA356

The drugs have so many side effects. I am on immuran and I saw that you can get growths and cancer from taking it. If you don't take the drugs do you lose your ability to walk or die from strangulation one day?Sorry so bleak but just would like to know.

[Joanmarie63]

Barbara, Hello and I hope you are having a strong day. I myself do not take any medications as I suffer bad reactions from them all. After I had my thymectomy I went into complete remisssion for 17 years. My MG is back but I am trying to control it with mental awareness, ie, getting plenty of rest, not going out into the heat, doing things slowly to conserve energy, just not pushing myself to hard. Only you know your body and what you can handle. Just listen to yourself and if you are that worried about taking the medication talk with your Dr. and see what he/she says.

[xmas 25]

hi! hope everyone is having a betterday than yesterday, i'm in same boat. just on mestinon for 3 months now but neuro is saying same thing. her reasoning is that in spite of all neg tests ,on mestinon i feel better not 100% and double vis almost gone. since imuran takes minimium of 6-9 months to work,it makes more sense to start , check reaction to it before i need it. i'm on the fence as you are. i will talk to neuroptha. before doing any changes.it makes sense to me when explained out to me but like you i am weary of any changes. but then again ,there have been sooo many changes lately in my health what is one more. also i would like to figure out any reactions and side effects to any med before i am in a downhill slope! at least we have a firm diagnosis-i pray for those that are in limbo at this time!!

[Pat 110]

Hi Barbara,

I too have very bad reactions to medications. Since the thymectomy in 02, I only take mestinon, sparingly, because of the side effects. After 10 years of having MG, I've pretty much learned what I can and cannot do. I listen to my body and try not to push myself. I have good days and bad, just like everyone else. I am very grateful I have come so far and since it's so unpredictable, I take it one day at a time. It's been a long road, and I've just learned to deal and work with it. Hopefully newer and better meds with fewer side effects will be available in the near future. We've come so far already. Hope you are having a good day!

Take care,
Pat

[Maxwell'sMom]

this is a question I think most of us have thought about, and turned over, and over again in our minds, and the not knowing which to take, and what to do can be very scary, and frustrating.

What can happen to you, depends on where you are with your MG. Some people will die with out their meds, as they'll keep going into a crisis, respirtory failure..etc.
Others can live life just on Mestinon. Many of us have to have a cocktail of meds to live, and are still struggling.
It's all so scary, I know. I really think, only you and your neuro can know which treatment you should take.

Imuran was awful for me, I became violently ill from it! Cellcept, I loved, I felt the difference right away, but it was shutting down my kidneys, so had to go off it. I was so sad to give it up.
I've been on Prednisone since I was first diagnosed, and hoping that someday, I'll be able to go off of it, but looking doubtful. I'm also on Cyclosporine, and a couple of other meds to help control this, but it really does change from person to person.
hence why, it's called the "snowflake" disease.
best of wishes
Love Lizzie