-
Mestinon (pyridostigmine)
<p style=”text-align: left;”>I have been put on this drug and have worked up to a full dose. It hasn’t helped my weakness in my limbs but may have increased my energy throughout the day?</p>
my neurologist has no other lems patients. Any suggestions from this group.I am on Vancouver Island in British Columbia Canada.
-
3 Replies
-
Hi @joanneevans !
Typically, LEMS needs a 1-2 bunch, sometimes a 3rd treatment option as well. Mestinon usually works best with 3,4 Diaminpyridine which, in the US is approved for adults under FIRDAPSE and for youth it’s RUZURGI. Prior to approval in the US, many patients were on the compassionate use program for 3,4 DAP through Jacobus Pharmaceuticals. There are Canadian patients who have been on the 3,4 DAP from Jacobus pharmaceuticals as well.
The reason Mestinon works best with DAP is because DAP increases the amount of acetylcholine released from the nerve terminal (which is what LEMS antibodies stop) and then Mestinon slows down how quickly the acetylcholine is used in the blood stream thus giving a 1-2 punch. It’s really quite amazing what a difference they make when used in combination.
Here is a column about Firdapse and Ruzurgi for your information, and that you can share with your neuro. I’m looking into the status of the application for approval for Firdapse in Canada, as well as how you might access 3,4 DAP from Jacobus, and will get back to you.
As for the 3rd part of treatment that a lot of LEMS patients are on, it’s doing immunosuppression or immunomodulation. Some patients have great success on Rituxab, cellcept, or other immunosupressants. Others, like myself, have done really well adding IVIG or plasmapheresis to our treatment plans. I truly am at pre-LEMS levels as far as strength and energy thanks to having immunoglobulin g added to my treatment plan. I’ve transitioned recently from IVIG to SubQ treatment, which means less time at the infusion center and less time recovering from treatment.
You can see more about LEMS immunosuppression treatment options here; and about IVIG here. and if you are interested in learning more about my IVIG and SubQ treatments, you can read about them in my column.
I know I’ve given you a lot of info to look at. Please feel free to ask any other questions you have and welcome to the Forums!
-
I can’t find the post now but I think it was Price who said when he started pyridostigmine[Mestinon] he really noticed a difference when he went to the gym on the treadmill. I was hesitant to try it because of the side affect of diarrhea but while awaiting a diagnosis, I was getting really weak & decided to give it a go, but at a low dose The next day I immediately noticed less dry eyes and mouth in the morning but I didn’t really notice more muscle strength until a couple of weeks later when I missed 2 doses due to a medical screening procedure. I still have to be aware of which dose affects the bowels but it does seem so far to give or at this point “hold” the muscle strength.
-
@searching4answers glad you’re getting some goodness from Mestinon. Yes, it was my post you are remembering. Many people report issues with Mestinon and mitigate by taking it only with food. That’s never been my issue. I take it four times a day, including a time release dose at bedtime.
Stay with it and keep exploring!
Log in to reply.