Tapering Off Mestinon?
I was on the phone with my PCP who told me that skipping a dose of Mestinon can cause my weakness symptoms to get worse even if I don't have MG. He said that it takes weeks to taper off this medication safely so that doesn't happen. I am wondering if there is research about this?
Looking forward to your replies.
Thank you,
Kaye
Once I began Ultomiris infusions I stopped my daily 120mg x 4 of Pyridostigmine cold turkey under the guidance of my neurologist. I had no side effects from doing so.
That sounds like a dream come true. I've been doing IVIG (gammaguard) for a few years and once I had my thymectomy I went on reduce medication. I haven't reach the part where I can stop taking 1 medication completely. The medication that worries me the most is prednisone. I've been on it for so long and I know that can cause a lot of wear and tear on your body. - Jazmin (MG team member)
Hello
I can't give you a professional educated answer for I'm not a doctor, but I can share with you my own experience. I've been on mestinon for 10 years...yes 10 years straight. After my body getting use to the medication, I did go through a phase where my symptoms subsided, and I thought everything would be fine. So, I started weaning myself of the medication. It didn't happen instantly but after a few weeks I notice my symptoms coming back. Now whether they came back worse I can't say.
Have you asked your doctor if taking the medication as needed would be suitable for you? My doctor also told me that Mestinon is a medication that has to weaned off gradually. I'm talking about 5mg less at a time. I hope that helped although it wasn't a straight-forward answer. - Jazmin (team member)
Hey Kaye! I just spent a while going through many articles on Mestinon and trying to find the reference for the potential discontinuation of the drug to be potentially harmful or fatal. I do not see a study that specifically is looking at this occurrence. I believe this is because studying this would be too dangerous to test subjects. Animal testing has possibly occurred, but would a human take this risk with MG being so individualized? I think the source of information is doctors who report adverse reactions when their patients discontinue Mestinon without tapering. Whether with doctors' orders but most likely did it independently due to side effects. It probably is a warning to all doctors treating this in the medical world.
I think you would most likely not die because information on the drug indicates that it should be discontinued if rare, possibly fatal, side effects occur. But I think it is highly likely it could worsen symptoms by throwing the body out of whack - Jodi, Team Member
