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 group.

@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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@colleenyoung

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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At this point I am gathering information about Rituximab and have no definite date to change treatments. I am starting monthly IVIGs again tomorrow and will continue to take CellCept. I hope my leg/arm weakness symptoms will improve again. The new Rituximab treatment option was just proposed by my doc on Monday. Concerned about side effects and want to explore Rituximab before jumping into a change.

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@colleenyoung

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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At this time I am only taking mestinon. I won't have any further treatment plans until after I see Dr. Ruple in Sept.

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After an long 8 month search for a diagnosis, I was finally correctly diagnosed on 3-24-2020 …. by a very intelligent floor nurse … after two months in two hospitals. She told me that she had patients right here at St. Joe's that had all the symptoms that I had. She said I had M.G. She got me tested and got the medications and an IVIG treatment of five days .. so that I have been in remission since Thanksgiving. She won … after 8 months of countless doctor and hospital visits failed me. I have ACUTE OCULAR MYASTHENIA GRAVIS and GENERALIZED MYASTHENIA GRAVIS. In reference to your vaccine question, my new primary doctor went "googling" and found that the MODERNA COVID shots should be safe for me to take …. as it was a "DEAD VIRUS" … so it would not affect my compromised immune system ..which is TOAST. I am required to take 2000 mg of CELLCEPT for an immune suppressant daily and other 3500 mg of 14 other meds a day including MESTINON. So Moderna has not given me any bad side effects … but they don't know if it is really protecting me either.

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@becsbuddy

Hello @rambo77 Welcome to MayoClinicConnect, a place to get and give information. Everyone shares info about their journey with health issues but we don’t give medical advice because we’re not doctors. You've asked a good question that is on so many minds. I put a link to discussions on the vaccines and health issues. I hope you’ll check out the discussions. I have an autoimmune disease and I’m on steroids and I’m getting monthly chemotherapy, but my doctors said I really should get the shot. What have your doctors said?
https://connect.mayoclinic.org/group/covid-19/

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Thanks for the reply about MG and the covid Vaccine . I have had 3 phifer shots as the doc said and I take Cellcept The way I understand is you get blood work for white and red cells and the white is low compared to normal that is some gauge of your Immune system . That is what my Doctor told me.

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