Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

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Exacerbation Post-Crisis

Kotsoteka
Kotsoteka

Had been doing okay with the MG diagnosed 2 years ago but did way too much yard work for a 56 y.o. man with MG the Saturday before Father's Day in humid heat. Six days later wife had to call 911 for me. Spent 28 days in the hospital, 17 of that on a vent and coded twice. It was PLEX it seemed did the trick for me. When I was discharged it seemed I had virtually no MG symptoms for a couple of weeks, just a very weak body from 4 weeks in bed. However of course they came back and I've been in what I would consider a rough exacerbation since. No breathing issues thankfully but they had me go back to the hospital for a week to do 5 more PLEX treatments which didn't really seem to provide much if any benefit. 


I'm being treated with 80 mgs prednisone and 150 mgs of imuran per day. I've been "stable" I guess which I should be thankful for but no real improvement other than maybe some minor physical conditioning following the debilitating hospital stay. Fortunately I've got a great job and insurance. I've started back working from home, about half time.


I've been told this takes a long time to recover from, and just to figure out if the imuran is working.  Any advice from folks who have made it through this? What did you feel helped you if anything?


  

Kotsoteka
Kotsoteka
Glad you are doing better and hope you continue to do so. Your situation is a warning to all of us.
leshek
leshek
I was in similar situation. 3 months in Hospital, 3 weeks in induced coma, intubated on ventilator, plasma exchange and all that magic. That fixed me for about 2 years. Next time got IVIG at the hospital then went to a rehab center and after 4 weeks returned home. Three month later ended up in hospital again. Intubation, ventilator, plasma exchange ... After that in 2016 my neuro decided to put me on IVIG every 4 weeks. As long I am getting the IVIG, Pyridostigmine 5 x every 4 hours except at night and Cellcept 2x 500mg my life is tolerable. Still getting tired and need to rest often though.

Stay strong
L
annkemp
annkemp
Russ you have been around here for awhile haven't you. I remember you from when I had my crisis and diagnosis.
Do you think it is possible for allergies to trigger an exaserbation? It seems to make sense because allergies start up the immune system and then the Mg kicks in....am I correct??
I had the vaccinne for covid and then summer came and it hit me hard. I questioned the vaccine because 3 other people I know had mg exaserbations but it could also have been the heat, The thought of the vaccine accerating my immune system makes me wonder. I am staying in to protect myself since I am now on 60 of prednisone but it is keeping me away from the 3rd booster.
Thoughts anyone???
Speechie
Speechie
For me, I’ve been told by my doc that other illnesses (even mild allergies can definitely trigger an exacerbation but other times, there’s no rhyme or reason to worsening of symptoms. I always take my meds, I rest often, I exercise when I can, I watch what I eat and still it sneaks up on me and smacks me down. I think if science can find out the reason for that, a cure might be one step closer.
In regard to 3rd vaccine, I took it and never noticed worsening of MG. However, summer heat or hot flashes do make me feel much weaker.
annkemp
annkemp
This site is so comforting especially when having problems. Unpredictable this disease is .