Myasthenia Gravis and COVID

Posted by rambo77 @rambo77, Feb 28, 2021

Looking for information on how the COVID-19 Vaccine. How much less the Vaccine is with a compromised Immune system.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

@colleenyoung

Steph, is your September appointment with Mayo Clinic?

@Erinmfs, What tips would you offer @skhollandmt as she prepares for her appointment?

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My MG was definatively diagnosed with a tensilon test with Mayo's neuro opthamology. I was seronegative and EMG negative at the time, but my eye was drooping. The tensilon injection opened my eye right up and I was diagnosed MG. I had a 4 day workup when I was first diagnosed. Go in with a positive attitude and let them test you for everything (like they did me), I had MRIs, an MS spinal tap, all kinds of tests, I even caught all my urine for 8 hours walking around the campus, and in the end, I walked out with MG after 4 days of testing.

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@Erinmfs

My MG was definatively diagnosed with a tensilon test with Mayo's neuro opthamology. I was seronegative and EMG negative at the time, but my eye was drooping. The tensilon injection opened my eye right up and I was diagnosed MG. I had a 4 day workup when I was first diagnosed. Go in with a positive attitude and let them test you for everything (like they did me), I had MRIs, an MS spinal tap, all kinds of tests, I even caught all my urine for 8 hours walking around the campus, and in the end, I walked out with MG after 4 days of testing.

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How painful was all the testing?

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@skhollandmt

Yes they are with Mayo. Because I need the macroadenoma removed I see endocrinology, neurosurgery, neuromuscular (because of the MG diagnosis), have labs, EMG's, and MRI! Very thorough evaluation for sure!

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How do you afford all this?

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@bustrbrwn22

How painful was all the testing?

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The testing wasn't painful at all. The worst part was carrying a jug around to collect urine. I had to take it everywhere with me, and collect urine. So embarassing. The spinal tap for MS wasn't painful at all, the nurse did an excellent job. I had a nuclear PET scan, that wasn't painful, I just recall being tired.

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@bustrbrwn22

How do you afford all this?

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My insurance will pay after I reach about 10 thousand out of pocket. I checked with them and they actually said I will owe about 6 thousand after these appointments (because my hsb also has been sick so we've been paying towards our deductible). So..........I guess I will be on a payment plan for a very long time. That's part of the reason I haven't pursued treatment sooner. My quote for surgery alone was almost 82 thousand. Unfortunately, I've started feeling so poorly that I'm having a hard time working but I continue to work as much as possible, and as much overtime as I can. Honestly, I have felt that it's a lost cause at times, that it would be better if I just died and then we wouldn't have to worry about the financial part. How's that for honesty! I get very frustrated but know I should be thankful to have insurance. But, I pay $500 a month for my insurance and then my co-pays, deductible, etc. Depressing.

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@skhollandmt

My insurance will pay after I reach about 10 thousand out of pocket. I checked with them and they actually said I will owe about 6 thousand after these appointments (because my hsb also has been sick so we've been paying towards our deductible). So..........I guess I will be on a payment plan for a very long time. That's part of the reason I haven't pursued treatment sooner. My quote for surgery alone was almost 82 thousand. Unfortunately, I've started feeling so poorly that I'm having a hard time working but I continue to work as much as possible, and as much overtime as I can. Honestly, I have felt that it's a lost cause at times, that it would be better if I just died and then we wouldn't have to worry about the financial part. How's that for honesty! I get very frustrated but know I should be thankful to have insurance. But, I pay $500 a month for my insurance and then my co-pays, deductible, etc. Depressing.

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Thats insane. Since I’m so nauseous I can barely eat or drink and my lips and tongue are swollen it won’t be long before my time comes. I look forward to no pain

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@bustrbrwn22

Thats insane. Since I’m so nauseous I can barely eat or drink and my lips and tongue are swollen it won’t be long before my time comes. I look forward to no pain

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I always say it will be the best sleep I've every hard! Sorry to hear about your pain.

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Be very careful about the vaccine. I have a very strong immune system, and it triggered permanent colitis (now 5 months ago Pfizer dose 2) and made my burning mouth syndrome much worse. Be warned!

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I began MG treatment with Mestinon (after my diagnosis) and after 18 months or so I just had to stop the meds as I saw really little improvement with my symptoms. Switched neuro docs to a "neuro muscle specialist". I have been on Cellcept for my MG and had IVIG infusions X2 every 4 weeks for 22 months. Symptoms of fatigue and muscle weakness/contractions in my legs was much improved. Stopped IVIG 5 months ago and continued to take Cellcept. However, 3 months ago my symptoms began creeping back. I am now restarting IVIG infusions this week along with continuing Cellcept. My Dr. has asked if I wanted to start another treatment regimen using Rituximab infusions instead. It was developed as a treatment for non-Hodgkin lymphoma but has been used successfully for auto immune diseases. My question is has anyone had this treatment for MG and if so, what was the result?

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@pmdwarrior

I began MG treatment with Mestinon (after my diagnosis) and after 18 months or so I just had to stop the meds as I saw really little improvement with my symptoms. Switched neuro docs to a "neuro muscle specialist". I have been on Cellcept for my MG and had IVIG infusions X2 every 4 weeks for 22 months. Symptoms of fatigue and muscle weakness/contractions in my legs was much improved. Stopped IVIG 5 months ago and continued to take Cellcept. However, 3 months ago my symptoms began creeping back. I am now restarting IVIG infusions this week along with continuing Cellcept. My Dr. has asked if I wanted to start another treatment regimen using Rituximab infusions instead. It was developed as a treatment for non-Hodgkin lymphoma but has been used successfully for auto immune diseases. My question is has anyone had this treatment for MG and if so, what was the result?

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Hi PMDwarrior, welcome. Allow me to tag fellow members @skhollandmt @rambo77 @Erinmfs @ellen307 @pdietrich @lynnes @chorba @janyce who can share their treatment experiences with Myasthenia Gravis and Rituximab infusions.

You may also be interested in this related discussion:
- Myasthenia Gravis: Share your treatment journey https://connect.mayoclinic.org/discussion/hi-everyone-let-me-begin-by-telling-you-some-of-my-story/

When do you plan to start Rituximab?

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