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Douglas F Young replied to the topic Evusheld Antibody Treatment in the forum Coronavirus (COVID-19) and Myasthenia Gravis 1 month, 1 week ago
Excellent summary. My team came to the conclusion that waiting 2 weeks before the next booster was sufficient. The Evusheld materials say to refer to the CDC guidelines regarding covid vaccines, but I could find no guidance whatsoever in those materials. I guess your mileage is going to vary.
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Douglas F Young replied to the topic Evusheld Antibody Treatment in the forum Coronavirus (COVID-19) and Myasthenia Gravis 1 month, 2 weeks ago
I had the shots, zero side effects, not even soreness at injection sites.
I ran over very little red tape. The infusion center gave me the name of a local doctor qualified as an infectious disease specialist. I sent an email to my doctor giving him the other doctor’s name. That doctor reviewed info from my doctor, who found me suitable for t…[Read more]
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Douglas F Young replied to the topic Very new to my diagnosis. A bit confused and would like anyone to weigh in. in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 2 months, 2 weeks ago
Christer, I was diagnosed at 67 with diplopia and tsosis. That was the extent of my symptoms for about 4 years. Some people never go beyond these ocular symptoms. However most people do. The extent to which they get generalized symptoms varies highly.
Something I have noticed in my research and interchange with with other myasthenia patients i…[Read more]
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Douglas F Young replied to the topic Eyesight Causing Driving Difficulties in the forum Healthcare and Myasthenia Gravis 2 months, 2 weeks ago
My neuro wanted to try the mestinon first, because prednisone is a two edged sword. After a few weeks she started me on a regimen that ended up at 60mg a day for several months and started tapering off. I am now at 10mg and still going down.
What can I say? It worked very well for my myasthenia. But it aggravated my blood sugar, made my skin…[Read more]
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Michelle and
Douglas F Young are now friends 2 months, 2 weeks ago
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Douglas F Young replied to the topic Eyesight Causing Driving Difficulties in the forum Healthcare and Myasthenia Gravis 2 months, 2 weeks ago
I started with mestinon immediately on diagnosis but it wasn’t until I had been on prednisone for several months that my diplopia and ptosis finally resolved. I get the sense that mestinon alone isn’t very useful against ocular symptoms.
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Douglas F Young replied to the topic Eyesight Causing Driving Difficulties in the forum Healthcare and Myasthenia Gravis 2 months, 3 weeks ago
My diplopia was so bad when I was first diagnosed that I couldn’t drive without closing one eye. I started wearing an eye patch but that means driving with significantly impaired depth perception, which meant staying out of freeway traffic. It took a few months of higher doses of prednisone before it resolved.
The diplopia has been the canary i…[Read more]
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Douglas F Young replied to the topic Anybody experience swelling in the legs? in the forum Healthcare and Myasthenia Gravis 2 months, 3 weeks ago
I have swelling in my feet and ankles. I also take Cellcept. Twice in the last year I have discontinued my Cellcept for 3 weeks or so. But I have not noticed any change in the swelling during or after those occasions. It’s possible that it would take more time than that to notice a change if cellcept were the culprit.
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Douglas F Young started the topic A link between autoimmune diseases and mental health challenges. in the forum Mental Health, Self-Care, and Support 3 months, 1 week ago
GoodRx posted this article this morning. You might recognize some of your own mental health issues that might be related to your MG.
BTW, GoodRx is a very good resource for those who are…[Read more]
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Douglas F Young replied to the topic Anybody experience swelling in the legs? in the forum Healthcare and Myasthenia Gravis 3 months, 3 weeks ago
Some good information here. Thanks
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Douglas F Young replied to the topic COVID-19 Vaccine Booster Shot and Myasthenia Gravis in the forum Coronavirus (COVID-19) and Myasthenia Gravis 6 months ago
Good question, and not likely to be answered soon. We don’t even know for sure how well the antibody numbers correlate to immunity. The antibodies are waiting around to notify the immune system that known pathogens have been detected, but maybe with immunosuppressed people there’s no one waiting to do anything with that information.
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Douglas F Young replied to the topic COVID-19 Vaccine Booster Shot and Myasthenia Gravis in the forum Coronavirus (COVID-19) and Myasthenia Gravis 6 months ago
I had Pfizer shots in Jan-Feb this year. Antibody tests came back negative. I was on 2000mg of mycophenolate at the time. I stopped the mycophenolate for two weeks before the booster and got positive results. I am also on 10mg prednisone which I left alone.
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Douglas F Young replied to the topic Gabapentin for Nerve Damage – Myasthenia Gravis in the forum Healthcare and Myasthenia Gravis 6 months ago
I take it for nerve pain in my legs from compressed lumbar nerve roots. It helps me a lot, and I don’t notice any side effects.
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Douglas F Young replied to the topic COVID-19 Vaccine Booster Shot and Myasthenia Gravis in the forum Coronavirus (COVID-19) and Myasthenia Gravis 6 months ago
Its reassuring that the MAB helped you even with your immunosuppression.
I tweaked my immunosuppressants before my booster and finally got some positive results. Nothing at all from the first two shots.
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Douglas F Young replied to the topic COVID-19 Vaccine Booster Shot and Myasthenia Gravis in the forum Coronavirus (COVID-19) and Myasthenia Gravis 6 months, 4 weeks ago
Jack, this is really uncharted territory, but we know some things. 1 1/2% of the population is immunosuppressed, but as of August 1 accounted for 46% of the so-called breakthrough cases. Looking at Colin Powell, we see how dangerous covid is to people with immune issues, either as a result of disease or as a result of induced immunodeficiency to…[Read more]
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Douglas F Young replied to the topic COVID-19 Vaccine Booster Shot and Myasthenia Gravis in the forum Coronavirus (COVID-19) and Myasthenia Gravis 7 months ago
Have you had your antibodies checked? Sometimes the lack of any reaction can be a warning sign.
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Douglas F Young replied to the topic Azathioprine Side-effects in the forum Healthcare and Myasthenia Gravis 7 months, 1 week ago
After a short time I had flu-like symptoms and heart palpitations that really scared me. Both resolved 24 hours after I stopped. Cellcept now for 4 years w/o side effects, other than my firm belief that it stymied my first 2 covid shots.
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Douglas F Young replied to the topic COVID-19 Vaccine Booster Shot and Myasthenia Gravis in the forum Coronavirus (COVID-19) and Myasthenia Gravis 7 months, 1 week ago
Good for you. Research, learn, and take control of your health.
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Douglas F Young replied to the topic COVID-19 Vaccine Booster Shot and Myasthenia Gravis in the forum Coronavirus (COVID-19) and Myasthenia Gravis 7 months, 1 week ago
You might want to ask your doctor to order an antibody test. The lack of any reaction could be a sign that your body had no immune response. That’s what happened to me.
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Douglas F Young replied to the topic COVID-19 Vaccine Booster Shot and Myasthenia Gravis in the forum Coronavirus (COVID-19) and Myasthenia Gravis 7 months, 2 weeks ago
That’s what I did for my 3rd shot since I had no immune response to the first two shots. I took 2 weeks off cellcept before the shot and a week after. I got a modest response (>20), but better than nothing.
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