Hi, I just wanted to ask about immune suppressants, see i'm currently taking 90mg of mestinon every 4 hours except for nights I take the mestinon timespan. my neuro wants to put me on immune suppressants but I don't want to even try them with the side effects. That scares me so much. Right now, I have symptoms every day. from vision, to generalized weakness and almost always my speech but some days i feel normal for a little while. I know I cannot work, still waiting for my ssi hearing actually. I have a family history of heart problems, my mom has had 3 heart attacks, my aunt died from a massive heart attack, 2 other aunts have also had heart attacks. my grandfather also died from heart failure and thats only on my moms side. dads side also has problems. theres also strokes from dads side. and another thing is, i finally am loosing weight..dropped 75lbs in the last year and a half. I know I have MG and struggle daily with symptoms but I am happy with my weight now. I read immune suppressants can make one gain. I dont want that. any one else had immune suppressants? How did it work out for u?

so now my neuro is sending me to another neuro for a second opinion...to lehey clinic, it's like ahhh!

It's always good to get a 2nd opinion on treatments.

I'm sorry your family has had so many heart issues. Do you know the reason for it? Antiphospholipid Syndrome can run in families. Have you been checked for that and any other clotting disorders?

Congrats on the weight loss! That's very hard to do, especially with MG.

I am only on Flovent for asthma and I can't do other immunosuppression.

It's a tough choice. I hope you can figure out what works best for you. Please talk to your primary doctor about figuring out whether there is a specific risk factor for heart issues in your family!

Take care,
Annie

Hi. Weight gain is a side-effect of prednisone, but not of other immunosuppressant drugs. I'm on azathioprine (Imuran). It actually suppressed my appetite for a few weeks until my body adjusted. I haven't had any other side effects that I notice. Really, none at all. I'm probably not typical, and who knows what long-term effects it's having. But I don't even get sick more than I used to. On 250 mg. a day, I'm still the only one in the house not to catch whatever's going around. I can't remember the last time I had a cold or cough or sore throat.

Again, I'm not claiming to be typical, but I wanted you to know that not everyone has bad side-effects from Imuran, and weight gain, as far as I know, is only a side effect of Prednisone, and not the other immunosuppressants.

Abby

I was on Cellcept for 11 years with no side affects. I had to switch to another immune suppresent because Cellcept seemed to stop working after 10 years and the last year on it, my symptoms got much worse.

Good luck with making a decision - I know they can scare you to death talking about the side affects, but fortunately, they usually apply to a small % of folks having to take them!

Hey, that's a very hard decision to make... I know it is.

I'm no doc, but I will just give you my advice: do not start prednisone.
If you're in that state where you still can choose, you do have symptoms of course but near a crisis, do not do it.

I've been there in 2010. Yes or no to those medicine. I was in the state you discribe. I couldn't do much, but I still was able to do little things. They said: you will feel wonderfull, it's such a miracle drug!
However, they kind of forgot to tell me that once I started the prednisone, getting rid of it was almost impossible: fat chance I'm on it for the rest of my life. Which kind of s*cks, considering the side effects. I've already had a steroid psychosis, have diabetes and much more.

If you're prone to hart disease (which you seem to be), another no to prednisone (of course, of you have to you have to...). It can give you diabetes, high blood pressure, high cholesterol, weight gain, weak heartmuscles and can give you these food cravings (you think about food and HAVE to have it). Which all gives you more chance on heart diseases.

Of course, this doesn't have to be the case. Maybe you will get loads better with just a tiny bit prednisone, without any side effects. No one can say.

However, I think there may be possibilities in trying immunosuppressants. Those can take a long while to start working, and do not always work. Azathioprine is most common for MG. For me, this didn't do anything. MMF (cellcept) is another, but this one can give you high cholesterol. Methotrexate is another one.

Most of them do not have side effects like weight gain. If you do gain weight because of one of them, it's mostly because 1) your symptoms get better so you can eat better or 2) you hold on water because you have kidney problems or high blood pressure or something.
But losing weight / being less hungry is a more common side effect.

Anyway...immune suppressants can have side effects, do not always work.
But with those, there's just no way to predict which one will be good for you. They do tend to take a while (sometimes even over a year) to start working.

For me:
Azathioprine (imuran): no effect at all. No side effects either. Used it or 2 years.
MTX: it worked very quickly, but it caused liver damage so had to stop. Used 8 months.
MMF (cellcept): no effect. Tiny side effects: higher LDL levels. Used 2 years.

Good luck, it's a very hard decision to make...

o wow, it is vary scary when starting another drug. I know with mestinon as of late my stomach hurts bad if I don't eat anything. That is when I can eat. Some days its either eating or talking. So many stories, I know def that I will never try the steriod prednisone. With my family history those are a no, no.
As for side effects I was reading this site http://www.drugs.com/sfx/imuran-side-effects.html its vary scary. Going to Lehey for a 2nd opinion is scary too. Lol, It's all scary... Now I have a hearing fr ssi in a few months too, maybe its the stress thats making things bad. I have doctors bills in the debt collectors. Once everything is settled I thats when I want to make the decision on my meds. ahhhh!!! lol, some days we need that.

Do not read too much experiences of other peeps on the internet.
Remember most people only post their experiences if they are bad. If you have a bad reaction on a pill, you're more likely to look it up and post a review, then if it just works the way its suppose to work.

But I agree, taking new meds is scary. You must think over the years I've taken sooo much drugs, I wouldn't be such a picky patient anymore. But I still refuse to take (whether injected, swallowed, ...) anything if I don't know what it is when I'min the hospital. Pity that makes me an "annoying patient".

When I'm at home starting a new pill, I always pick a day where I do not have to go anywhere and there's someone at home.

And yeah, new docs are always a scary thing. Do they take me serious? Do they take time? What if the new one doesn't agree with diagnosis/treatment? Do they believe me? Etcetera.

Good luck!