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Real members of MGteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Is it possible the pyridostigmine has stopped working after only 6 months? I've had 2 weeks of exhaustion, with more symptoms resurfacing.

A MGteam Member asked a question 💭
Kentucky
June 19
 · 
Reactions
A MGteam Member

Ugh that’s my fear too - got to get to a dermatologist just tired going to all these specialists.,

June 26
A MGteam Member

When I was first diagnosed, pyridostigmine was the go-to drug. It didn't do enough for me to feel like it was helping much. I might feel a little lift after taking it but it never lasted more than an hour or two. The doc kept upping the dosage but finally iI was taking it 5 or 6 times a day and it was making me sick more than helping. She finally sent me to the Cleveland Clinic where I saw Dr. Levine. He said to throw it away; it wasn't going to help my Musk+ MG and he recommended Rituxan, 2 infusions every 6 months. Wow, it meant a long tiring day but my double vision was gone after the the first infusions and 2 years later I was at minimal manifestation. That was 2021 and I have not had treatment since. I do have very mild daily symptoms, fatigue, shortness of breath, occasional weak neck etc. but a little rest seems to get me going again just fine. I read that Pyridostigmine has been used for MG since the 30's. It is tried and true, safe and cheap but....it doesn't help everyone and there are several other ways to go now. Is your neurologist a neuromuscular specialist?

June 23
MGteam

It's absolutely possible that pyridostigmine may feel less effective over time, and two weeks of worsening exhaustion and returning symptoms is worth taking seriously. MG is famously unpredictable — symptoms can fluctuate, improve, and worsen in cycles that don't always follow a clear pattern. A few things could be Show Full Answer

It's absolutely possible that pyridostigmine may feel less effective over time, and two weeks of worsening exhaustion and returning symptoms is worth taking seriously. MG is famously unpredictable — symptoms can fluctuate, improve, and worsen in cycles that don't always follow a clear pattern. A few things could be contributing to what you're experiencing:

- Medication timing — Pyridostigmine works best when meals and activities are timed around its peak effectiveness, roughly an hour after taking it
- External triggers — Certain medications, infections, or stress can cause MG symptoms to flare up
- Natural disease fluctuation — MG symptoms can worsen for a period before stabilizing again
- Dosage may need adjusting — What worked initially may need to be reviewed by your specialist

It's really important to contact your neurologist or MG specialist soon, especially with two weeks of worsening symptoms. They may want to adjust your dose, explore additional treatments, or rule out any triggers. Don't wait on this one — prolonged symptom worsening deserves prompt attention.

June 19
A MGteam Member

Oh I hear you carol! I see my GP, a cardiologist, a rheumatologist, a pulmonologist, and a neurologist...thank goodness I no longer see the oncologist or the nephrologist! I am just tired of them all!

June 26
A MGteam Member

Thank you carol. I pray my neurologist can offer me some choices...I am seronegative so I know not a lot is available but I will take what is.

June 19

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