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We’ve had back to back stretches of 100 degree temperatures here in the East. I’ve been in a flare for two weeks now. I have AChR gMG, treated by Vyvgart infusion cycles (4 weeks on/3 weeks off) and Mestinon.

July 17
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Answer Summary

Members discussing heat-triggered flares with gMG shared how the recent stretch of extreme temperatures has caused significant setbacks, with... Read more

Members discussing heat-triggered flares with gMG shared how the recent stretch of extreme temperatures has caused significant setbacks, with many feeling isolated, exhausted, and frustrated by being confined indoors. A recurring theme was that staying in air conditioning is the most reliable way to manage heat flares, and several members shared personal strategies like adding AC to a garage workshop and keeping an Albuterol inhaler nearby for respiratory and dizzy spells. Members also offered emotional support to one another, noting that staying calm, knowing personal limits, and holding onto hope were just as important as any medical treatment.

A MGteam Member

Spot on Robert, totally agree!
But I must say that anger does not help the situation, it only increases the flare ups, it is best to try and stay calm wherever possible, i know that its easier said than done,
😃

July 17
A MGteam Member

Thanks Robert — really. Even after six years with MG, I’m still learning how unpredictable MG can be. The heat‑and‑humidity flares only started for me after I moved back East, and this recent stretch really knocked me sideways. So that parts new - to me. You’re right, we each get our own custom blend of MG. I’m just trying to figure out mine. You being willing to put yourself out here means a lot. A lot I can use.🫡

July 17
A MGteam Member

As most MG patients know from personal experience, the (correct) default answer to most MG questions is that there are very few if any symptoms, meds, timelines or predictions that work for all MG patients. There may well be exceptions to that broad generalization but they seem to be very few and those few debatable. We're all looking for reliable ways out of our MG predicaments, but for most of us, most of the time, the only answer is an extended, life-long course of personal trial and error. That truth generates entirely understandable frustration and anger, but so far as the current state of MG research would have us believe, no change is even on the horizon. It would be useful if capable and qualified MG scientists (not pundits or influencers or self-appointed spokespeople) came up with a list of proven MG generalizations that patients could consult, but the list would necessarily be a short one.

July 17
A MGteam Member

Wow, Elaine that sounds horrible! You did right though to come inside, no doubt! I keep an inhaler nearby during heat flares. Strictly for MG related respiratory fails - but it helps a bit with the dizzy too. My neurologist prescribes Albuterol. I don’t have asthma or COPD, but it helps me in those moments…Hope you’re feeling better 🙏

July 19
A MGteam Member

Yes I noticed that getting upset or anxious makes things worse. It's a whole new way of life that you have to live to survive.

July 17

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