Bad Mestinon Reaction
 

Hi I was just diagnosed with MG after more than 18 months of intermittent double vision. I haven't had generalized symptoms. My neurologist prescribed mestinon and I started taking 30mg 2x yesterday. When I went to bed I had such intense muscle twitches that were worse than the vision issues. I reduced the dosage to 15mg this morning and called the doctor. He said to try 15mg 2x a day. I took the second dose at lunch right before I ate, and all of a sudden I had trouble chewing. I was hungry so I kept going but then I stopped when I realized it was hard to swallow. Scared me because I have not dealt with this ever. I have been trying to hydrate well too because of the twitches and cramps but now I don't want to drink anything until the medication wears off. Packed the doctor but no word yet. Not wanting to take it again!

Any advice?? Much appreciated!

Hi, KES. Welcome to the world of MG. ;)

Mestinon kicks in about a half an hour after you take it. 2-1/2 after you take it, it wears off. So there's about two good hours of use of it.

So, my question is, when you had the intense muscle twitches when you went to bed, was Mestinon in your system? In other words, what time had you taken it that night? If it wasn't in your system, then your MG just might've been worse due to how MG can get worse towards the end of the day.

That's weird to have such a strong reaction to Mestinon if you have MG. Twitches are a fairly normal side effect for the first doses, but not increased weakness. See the Mestinon PDF below.

Did you have any digestive issues with the drug?

How were you diagnosed? Did you have positive antibodies? A Single Fiber EMG?

I think you should talk to your neurologist again. You might need a different treatment. Are you sensitive to any other medications?

I think you should start a journal and write down the exact time you took Mestinon, the dose you took, and at exactly what time you had any reactions. That will help the doctor, too.

How are you now? Do you have shortness of breath? Do you still have swallowing issues?

How much did the doctor tell you about MG? You can read up on it at either of these two sites.

www.myasthenia.org
www.mdausa.org

There's a lot to know about MG. Some drugs can make MG worse. A lack of sleep, infections, surgery, extremes of heat and cold (makes MG much worse), and many other things can make MG worse (anything that is a stress on the body).

Try not to "panic" about any symptoms (that'll only make it worse). ;) If you become so bad that you can't swallow well, are really short of breath, or you are really weak in general, that's the time to dial 911. In case your doctor didn't tell you, some MGers can have a "myasthenic crisis," where they need more help right away. We can tank pretty quickly and severely at that point (again, don't panic!), and need help right away.

Anything else we can help you with? It's hard to deal with a new diagnosis. Give yourself some time to adjust. The good news is that you can manage MG with rest and treatments.

Ask as many questions as you need to! People here are great and have a lot of experience and support to offer!

Annie

Thanks Annie! Very helpful. I was diagnosed with a single fiber EMG and musk antibodies were positive. I have not had notable muscle weakness at all and I have been able to lift weights without much trouble. I used to be really active running marathons, but stopped running because of general burnout after a race in May. My only real MG symptom has been the eye issues. No digestive issues with the Mestinon.

The doctor did call and told me to stop taking it. Will see him again next week. I am okay now and able to drink water fine.

Last night I had taken a dose and had the twitches about 90 min later. As of now, about 6 hours since I had the swallowing issue, I feel much better and the twitching has almost stopped. It might take a day to get it completely out of my system.

Actually, Mestinon gets out of the system rather quickly!

Have you had any general tests done, like a comprehensive chem panel, thyroid, B12, vitamin D, etc.? If not, that would be a good idea. MGers often have other issues or other AIs, unfortunately.

MuSK, eh? Well that can be quite a different type of MG. No wonder you had that reaction to Mestinon! Check this out.

http://neuromuscular.wustl.edu/synmg.html

http://neuromuscular.wustl.edu/mtime/mgdrug.html#musk

Is your neuro a MG expert? MuSK can be tricky, so they might need to do a little research if they aren't real familiar with it. It might be worth it to consult, even if over the phone or email, with a neuro who does have experience with treating MuSK.

Have you had a chest CT to look at your thymus gland?

Rituximab might work for you. Dr. Charles Harper (MG expert) from Mayo in MN has treated MG patients with that (he has an email listed on their website).

You should do a lot of research before you decide on what to do. And if you have a family history of cancer, that's important to tell your neuro, too.

Maybe you could do a post calling on help from fellow MuSK patients, to see what has worked for them!

Annie

Thanks for the links! I am realizing the range of issues and I need to do some more research. CT scan tomorrow.

Re: family - no history of cancer or other diseases (good genes generally) but I am hypothyroid as is my mom.