I had headache the first few days and again the first few days each time I increased the dose. I think I have lost some hair but not an amount noticeable to others, though I have only been taking it a month or so.

I never had any problems with Imuran. And, after about two and a half months I was able to quit taking mestinon and slowly taper off the 10 mg of prednison that I was taking. I have enjoyed over one year on just the Imuran and have been symptom free.

Now I take 50 mg of Imuran 6 days per week (I take Sunday off) and my life is pretty normal.

I hope you are as fortunate as I.

Bless you, Bill, for sharing that. You inspired hope today.

I have been on Imuran for almost 3 months and have had no side affects. i am also on Prednisone and my hair has been in the best shape it has ever been in. Imuran is working, I feel much stronger!!

I also had concerns but have been taking it for 2 months and have had no side effects. Good luck

An interesting comparison of various MG treatments and the side effects can be found at
http://neurologiauruguay.org/home/images//controversiasenmg.pdf

The first part are studies, the second part is a presentation summarizing the information.

I hate to be the one to give a bad report, but I had chills and night sweats. I would shake so bad that I could hardly walk. Thankfully this only happened for two nights. I had flu like symptoms, body aches, weakness. The over all symptoms only lasted for about a week, then I was fine. I never had trouble with hair loss, and I take three doses a day now. I am thrilled with the quick response of Imuran. I am back to work now and feel good almost every day. I would still take it and go through the reactions to Imuran, because I feel so much better now. It is worth it. Barbel

Wow! Thank you so much! I feel so much better after reading all your responses, im literally smiling! Hopefully its only going to get better from this point forward.

Also, Bill did you get a thymectomy done?

No thymectomy . My neuro did a CAT scan or what ever it is when I was first diagnosed, but it showed nothing irregular. So, I have been very fortunate and I am thankful everyday.

I think some doctors are quick to do thymectomys on younger patients. I don't know if that is good or bad. My neuro thought there was much less to be gained from a proactive thymectomy for someone my age.

Russ that was a informative study. You should put it in our file for members, I don't know how but B can tell you. Will

Welcome to the group, ShanAlis! I just started Imuran a few minutes ago! So, I am now on Mestinon and Imuran. Prednisone is too risky for me for a bunch of reasons. Please let us know how you do on the Imuran! Hugs, Rosie

I started Imuran on 1/17 at 100mg. The only side effect I had was headaches. On 1/23, the dose was doubled to 200mg.

Over the past couple of weeks, I have been sleeping a lot... a good two hours a day. I thought I was just recovering from working on a design job a couple of days a week, but now, I am wondering if it might be the Imuran.

For the past several days, I have been aware of feeling pretty feeble and also having breathing trouble. My voice has been getting weaker for the past two or three days.

I am grateful to be seeing a Pulmonary/Critical Care Specialist tomorrow morning. But, I am wondering if the Imuran could be making me so tired that I can not keep my eyes open... and maybe weaker overall.

'Anybody else experience something like this? I will call my Neuro tomorrow.

Hugs,
Rosie

Rosie,
Since you are not on prednisone, there is nothing to stop the progression of MG. Mestinon just gives you relief of symptoms, but does nothing to stop the progression. It normally takes 6 months to a year for Imuran to kick in, so that is why most people are on prednisone. for those that can't take prednisone, generally they are on ivig or even plex.

I had headaches at first with Imuran, but that subsided. When my neuro increased it to 250mg I started getting sick to my stomach every morning. He has since increased it to 300mg and to take 3 pills in the morning and 3 at night. I don't get sick anymore by doing that. I lose a little more hair than normal, but other people can tell that. Hope this helps.
Cathy

Thank you, Cathy! I had pushed myself too hard for about a month, at my neuros urging and thought I was just getting caught up on rest. (My Neuro has told me not to do that anymore for now.) I hope it doesn't mean I can't take Imuran and I hope it's not the progression of the disease... and I hope I get IVIG soon. It's nice to know that somebody here is taking a higher dose than I am, for sure! Thanks again, Cathy! Hugs, Rosie