Imuran starting to work?
 

I started Imuran 50mg at dinner time three weeks ago. I'm already on Mestinon (about 150 mg/day) and 15 mg Prednisone/day. For the last few days, I have been feeling like I overdose on my first dose of Mestinon of the day. I take 60 mg in the morning with food. I'm wondering about your opinions of whether this overdose feeling could be that the Imuran is kicking in and that I don't need as much Mestinon? I intend to lower the Mestinon to 30 in the morning, but wanted to hear from those with Imuran experience if this sounds familiar.

What are the symptoms you're having that make you feel like you're overdosing?

Abby

Unfocused eyes, heavy legs and arms, difficulty sitting up/holding head up, extreme tiredness and fatigue. This compared to pre-Imuran when I would have mild arm/leg weakness, no ocular problems, minimal fatigue/tiredness and difficulty sitting up and holding my head up would come later in the workday if at all.

I would guess it's the Prednisone. Imuran takes months to kick in.
PS: Imuran made me very sick. I lost 35 pounds.
Mike

Well, I don't know. It's true that too much Mestinon can make you weak, so I don't know for sure that those symptoms aren't from too much Mestinon. But in my experience, the first sign of too much Mestinon is muscle twitches (little painless twitches in different parts of your body). That makes perfect sense to me: if it's the acetylcholine that tells the muscles to contract, then if you have more of it than you need, your muscles will contract--twitch--when you don't want them to. This is just my guess.

I think that your idea that you're taking too much in the morning is a reasonable conjecture. After all, you may be naturally stronger in the morning--that's typical of MG--so you may need less.

I've been on Imuran for over a year and haven't improved--or maybe I've improved a little. I suspect it's stopping me from getting worse, but I don't think most neuros expect to see results from Imuran for at least three months.

How long have you been taking the Prednisone? Some people find that Prednisone makes them weaker, especially in the beginning. But I don't know why it would make you weaker in the morning, but not later in the day.

Journal, journal, journal! You'll be surprised which connections are clear looking back, but that you didn't notice at the time.

Abby

Thanks for your thoughts! I've been on mestinon for a year and prednisone for 10 months, so those are the more constant meds, which led me to wonder about the Imuran I just started. Balancing meds is difficult enough; balancing meds and a disease that changes sometimes hourly is next to impossible :)

I agree that keeping a journal is very important; have done it for the 3 years since this all started.

It's so hard to figure out, isn't it? I can never see the forest for the trees. I mean that you can't tell if a new symptom is just a passing phase, or if it's a sign of things getting worse--or if a good spell is just a fluke or a sign of things getting better. I used to have trouble with the muscles in my sides, but that's been way better for a long time now--close to a year. If I say, "I think I'm starting to get better," I remember how last week I collapsed, etc. But then I think, yes, but that was just one day, and not a whole week of weakness, like I would have had months ago.

I have been on Imuran for over a year, but I was on a dose that was much too low for a long time. My doctor bumped up my dose again a few months ago, and I really do think I see an improvement. I am going to see if we can increase it still further.

I have not had any breathing or vision troubles, so I elected to give the Imuran a really long trial, since it doesn't give me bad side-effects. I've been avoiding Prednisone, choosing instead the risk of not getting better at all, or not for a long time. My doctor has been encouraging me to give the Imuran a chance, even though it's taking so long, because he's had such success with other patients on it. I've been less optimistic, because I don't think I have ever heard of anyone here going into remission on Imuran alone, but I'm willing to keep trying.

Abby

To me that sounds like the MG worsening. Normally, weakness from mestinon would be accompanied by twitching and stomach issues. That said, everyone reacts differently.

Yeah, I had a bit of eye twitching too. But today is throwing me even more because I'm getting cramped upper arms, my calves feel like they have bands around them, walking is harder than it has ever been, and my lower arms feel like they're floating in water...all new things. I'm inclined to give the Imuran time, I'm supposed to up the dose to 100 in another week, which scares me if all this is being caused by the 50 I'm on. And who knows whether a busy weekend like I had is the entire culprit...so as long as I'm still breathing well, guess I'll keep going with what I've got to help. I'd hate to think MG is worsening given I had a robotic thymectomy back in December and all this great medicine to work with! Thanks for everyone's input, and I of course welcome any other ideas!

update
 

Just thought I'd mention I talked to my neuro last Thursday about the new symptoms. He upped my prednisone from 15 to 20/day and the effect was immediate and positive. Back to my old new normal now :)