Excessive sleepiness

[TheresaG]

Fatigue is one of the great (not) symptoms of MG.

I find that I must take a nap most every day . 1.5 hours is my magic number. Then it’s like starting the day over. Drink my caffeine to awaken then get on with the second half of the day. Mornings are still the best. I also try to only make plans to be active every other day. This has been going on for 10 years . Does not change much. Every once in a while I’ll get a 3-5 day, I’m normal period. Few and seldom. I’m on vyvgart, prednisone and mestinon.

They’re not a cure just a help. Before any of these, I would sleep all day. With many more side effects.

[Margie]

I share many of what Theresa G. has stated; need nap everyday (2 hours), wake up and have my coffee, get on with the rest of the day. I also am like her in that I try to have a day of rest in between appointments, shower day, etc. otherwise I’m totally wiped out.

I’m on Ultomiris, Prograf (Tacrolimus), and Prednisone. Unfortunately, I had a reoccurrence of my Stage 3B Malignant Thymoma 15 months after my initial sternotomy with radiation back in May 2020, which is now in the pleural space and not resectable. So, I think I have overlapping symptoms too between the both with excessive fatigue too.

[paul spychalski]

Which is better and easy to use, <b style=”font-family: inherit; font-size: inherit; color: var(–bb-body-text-color);”>VYVGART or Pyridostigmine?

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[Margie]

Hi Paul,

With MG there is no one fit for each of us. That being said, Mestinon is a pill form and the cheapest route, if you can tolerate. Vyvgart is more expensive and either in infusion or injection form.

In my case, I could not take Mestinon because it gave me terrible stomach problems and also caused muscle twitches for me. I tried Vyvgart infusions for a while and wanted to see if Ultomiris would give me better results. In my case it did.

I hope you find the right fit for you. My current regimen is Ultomiris (every 8 weeks, Prednisone 7.5 mg daily, and Prograf (Tacrolimus 1 mg ea., 4 per day)

[Sharon Haw]

Yes, and thank you, your post gave me an epiphany. I used to be a night owl who did her best work in the late evening and often had insomnia. In the past year, that’s reversed. I’m best in the morning, energy is tapped out by 6 pm and I’m falling asleep sitting up at 9pm. I also need a recovery day after an active day. I was following the “don’t nap” sleep hygiene routine but your post reminded me that it may not apply to those with MG. Since I no longer have trouble falling and staying asleep, I’m going to try the nap route and see if that helps me have more energy in the afternoon/evening or wake up earlier. I was diagnosed in 2019 and am currently stable on 2000mg of cellcept daily.

[Kent Estes]

This is a great forum to share. I find that neurologists seem to dismiss some of our symptoms that do not fit their textbook learned symptoms of MG. It was good to hear that others have the problem of general fatigue and sleepiness. I find that I’m good every other day for house cleaning, laundry and the like. I thought it was just laziness setting in but I now understand it a symptom of MG. Thanks for sharing everyone. This is a great community.

[Mama]

I was diagnosed with MG in August of 2023. I have always been very active and pushed myself to do all that needed doing. The fatigue has been the most difficult for me. I can sleep faurly well, but within a few hours of getting up, I am falling asleep reading or watching TV. If I have a task to do, I break it up and do a little at a time. It is most annoying.