Pyridostigmine
I was just diagnosed about a 5 weeks ago, doc put me on 60mm of Pyridostigmine 3x a day. I feel no change, Doc said first, it could take up to 14 day and after 14 days with no change he said it could take-up to 8 weeks before you feel a change. Is this correct or should I start to look for a different doctor. Thanks
FWIW, my neuro says response to mestinon is fairly quick. That's why it is used to confirm diagnosis for seronegative people (can rule it in but can't rule it out). If you don't respond at all within a day or two, either you don't have MG or it's not the right med for you. Some MG people simply don't respond beneficially to it. I'm still not sure it's helping me but since it can't really hurt, I still take it proactively when I know I will be using my body. The one thing I've learned so far is that with MG there isn't one easy answer to anything. Find a neuro you have confidence in because your medical team is crucial and you have to trust them to help you make good decisions. Good luck!
hello
the healing process definitely varies from person to person considering we all react to certain treatments differently. I do hope your care team is finding a treatment plan that is specific to you and your needs. I got diagnosed back in 2012 and I've had my far share of treatments to say the least. Results of any treatment when dealing with MG takes time. Personally I normally see results in about 4 weeks. I'm currently in the hospital now receiving IVIG for a creeping flair up. This journey is not a fun one but I hope you are able to find the results you need. - Jazmin (team member) Thank you, very much, for the link on treatment types. I am encouraged, so far, but know it can take a while to get the best, safest, effective treatment. Thank you again!
I was initially prescribed 240mg of Mestinon along with 100mg of Prednisone per day. On top of these meds I was given a series of IVIG treatments. This was in 1999. I started to see positive effects in 2 months. I also had a thymectomy, the removal of The Thymus Gland. I currently remain taking 60mg. of Mestinon daily. Best of Luck to you! Thank you! Still early on and beginning the navigation into alternative treatments. Neurologist is seeing some good results from the Prednisone, but now wants to start the very gradual weaning process, introducing Mychophenolate with a very slow reduction of the Prednisone. We will try this for a couple of months. I see her again in June. She said that this newly added med can take many months to start showing positive affects. To further complicate (maybe) my PCP reported that one of the previous CTs I had revealed a Benign Adrenal Adenoma...benign adrenal tumor. But they can sometimes cause problems, so now in the queue to see an Endocrinologist for hormonal workup. All good, as I probably would not have known about it had it not been for the imaging that ensued upon initial MG diagnosis. I have a lot to learn and navigate, being so new to the process. Grateful for your feedback and knowledge. So glad to have found such a great resource with so many that can relate to the experience. Best of luck to you, as well!
I had the same experience with Pyridostigmine, but at 90mg 3 x per day. Very little improvement the first few weeks after diagnosis and after several, frustrating interactions with first neurologist, I changed specialists. (That is another story. 😀 )
She/2nd Neurologist immediately stopped the Pyridostigmine and put me on 20mg Prednisone per day. (Regarding the Pyridostigmine, she said that if I wasn't seeing improvements within a few days of starting it, that it is probably not a good match for treatment.)
It took a few days for the Prednisone to start working, but vastly improved symptoms since then...I am starting my 3rd week of taking it.
I am very early in my diagnosis (February of this year) but I think it is something that I have been dealing with on some level since 2019. So relieved to finally be correctly diagnosed and seeing some improvements.
My neurologist and I have already talked about long term plans to slowly introduce non-steroidal treatment options, as taking prednisone forever is probably not ideal, but its a journey. I have a follow up in a few weeks to continue identifying a long term plan.
Good luck on your journey with MG. Everyone's experience is so unique so I hope you find a good match with a physician. I think that is the key to success.
Take care.
@rags Hi there, since MG presents itself differently in each person, it's hard to know the exact timeframe of when treatment will begin to take effect. It's terribly frustrating but please know you are not alone on this journey. So glad you have found our community. I wanted to share this article on treatment types: https://myasthenia-gravis.com/treatment. Wishing you a gentle day, Kaitlyn (Team Member)
