Lisa Blutman
Forum Replies Created
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I had evusheld on recommendation fromy neurologist and primary car when I participated in a study and found I produced no antibodies from the Covid vaccines. I take celcept and mestinon to manage my mg and am considered stable. No reactions were observed or felt. My next dose is November. You get it every six months. I follow up with the Covid vaccines also.
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Hi: when diagnosed with occular, my neurologist immediatly put me on mestinon. I ended up with general layer that is totally undercontrol when adding celcept. You need to see a good neurologist who will work with you.
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I am fairly stable on my mgmeds. I have been asked to participate in others and always say no as i dont want to end up back in the hospital with a crisis.
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My neurologist had me drink a small amount of quinine water when i had the muscle fasciculations. I take 60 mg od mestnon 4 times per day along with 1000 mg of celcept twice per day. I am no longer having any issues and am stable.
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I have requested it as after 4 COVID vaccines I still have zero antibodies. I am meeting with my family practitioner on the fifth of April to discuss this. My neurologist sees nothing wrong with it.
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I am doing accupuncture for joint pain due to osteoarthritis in my knees. I had had a joint replacement prior to my diagnosis of mg and it looks like the other knee is ready. My pain is managed by accupuncture.
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All doctors and patients must decide upon the correct course of treatment for their MG care. It was high-dose steroids that put me in a crisis where I suffered respiratory failure and kept me in the hospital for a month. This was followed by 5 days of IVIG and two subsequent treatments of 3 days of IVIG. I currently take mestinon and cellcept and have no subsequent issues.
Best of luck in your treatment,
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It is an interesting disease. My first sign was my left eyelid. Since then I had an MG crisis and stopped breathing on them (I was in the hospital for another reason). I take Pyridostigmine 120 mg 4 times per day and CellCept 1000 mg. twice per day. I also had an eyelid lift that my insurance company paid for as the ptosis affected both eyes. I am now considered “stable” and have no issues. However, after 4 covid shots I show no antibodies and my doctors are trying for the new drug Evusheld. I hope you continue to do well.
Lisa -
Hi: I had 3 shots of Pfizer and one Moderna (totalling 4). I got my fourth as my health plan recommended it. I participated in a study through Stanford and two weeks before my fourth, I showed zero antibodies. The worst reaction I had was tiredness, but then I am always tired.
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I have had 3 Pfizer shots. My arm, neck and back were sore with tiredness for my second. 6 months later I had my third with arm soreness and tiredness only for my third.