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Charles Karcher replied to the topic Ultomiris (Ravulizumab-Cwvz) FDA-Approved for Generalized MG Patients in the forum Healthcare and Myasthenia Gravis 4 days, 12 hours ago
I am on Soliris. Saw my neurologist’s NP last week and mentioned Ultomiris. I also have reached out to my Alexion Onesource rep to get things moving forward for the switch. Not familiar with the path from FDA approval to Medicare approval.
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Charles Karcher replied to the topic 4th shot? in the forum Coronavirus (COVID-19) and Myasthenia Gravis 1 month, 3 weeks ago
I received my fourth shot today. All four were Pfizer. My third was in mid August. Sore arm was the only reaction with any of my shots. Do not plan to alter my daily routine based on this latest vaccination.
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Charles Karcher replied to the topic Misdiagnoses: A Journey of Its Own in the forum Healthcare and Myasthenia Gravis 3 months ago
My first symptom was double-vision. My optometrist referred me to an ophthalmologist who diagnosed me with 4th Nerve Palsy. It was only after I went to the ermergency room with swallowing issues and slurred speech was I diagnosed with gMG. Fortunately that first trip was all it took.
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Charles Karcher replied to the topic Summary of IVIG Side Effects in the forum Healthcare and Myasthenia Gravis 4 months, 2 weeks ago
I had IVIG treatments after my MG was not controlled by plasmapheresis and Mestinon and Prednisone. I was never given Benadryl or anything else but saline with the IVIG. I had the five day treatment in the hospital. After a month of twice weekly treatments I was switched to Soliris. The side effect I remember was fatigue. I do not remember ar…[Read more]
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Charles Karcher replied to the topic Additional Diseases/ Illnesses on Top of Myasthenia Gravis in the forum Healthcare and Myasthenia Gravis 5 months, 1 week ago
My most severe symptom has been difficulty swallowing. I was previously diagnosed with Acid Reflux with Barrett’s Esophagus. Now when I have some difficulty I am unsure if it might be MG or Acid Reflux. I take medication for both.
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Charles Karcher replied to the topic Ocular MG – Hacks, tricks, tape, etc? in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 5 months, 1 week ago
I was initially diagnosed with 4th Nerve Palsy. My opthamologist said if it did not get better on its own than we would try Prismatic lenses. I still have double vision but not to the point that I need those. You might ask your neurologist or if you have an optometrist or opthamologist you trust if this might help you.
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Charles Karcher replied to the topic Experience With CellCept in the forum Healthcare and Myasthenia Gravis 6 months, 1 week ago
I have been on 2000 mlg per day for almost two years. I have not had any side effects that I am aware of. I know that is an immunosuppressant but either because of staying as close to home or simply good luck, I have not been sick at all since starting to take it.
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Charles Karcher replied to the topic Experience With Feeding Tube in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 6 months, 1 week ago
The most extreme of my symptoms was the near complete inability to swallow. Before I was stabilized all four times I was in the hospital I required a feeding tube. The first time they used a full size tube. I thought I was going to die while they were getting it in. It was perhaps the most horrible experience of my life. The other times whil…[Read more]
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Charles Karcher replied to the topic Finding a Primary Care Doctor to Oversee Myasthenia Gravis in the forum Healthcare and Myasthenia Gravis 8 months ago
I have a primary care doctor. He is the first to admit he is not informed enough to oversee my Mg treatment. That is the arena of my neurologist. The only connection to my Mg that the primary care doctor has is providing the prescription authorizations for all my medications. I think it is important for at least one doctor to know and pre…[Read more]
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Charles Karcher replied to the topic Taking Care of Pets in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 8 months ago
Unfortunately both my dogs died within 8 months of my diagnosis. It does take a lot of energy to give them the proper care. So far I have decided to not get another pet. I really don’t have someone I can trust or impose on to take care of a pet should my illness render me unable to care for them. Also I was a late onset diagnosis and now at…[Read more]
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Charles Karcher replied to the topic Fear of Symptoms in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 8 months, 1 week ago
The symptom I fear most is the inability to swallow. Actually my first symptom was double vision. That soon progressed to inability to swallow and slurred speech. It took 4 hospital stays over a three month period to stabilize my condition. Each time I was fitted with a nasal feeding tube to receive nourishment and oral medicines. Gett…[Read more]
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Charles Karcher replied to the topic COVID-19 Vaccine Booster Shot and Myasthenia Gravis in the forum Coronavirus (COVID-19) and Myasthenia Gravis 8 months, 1 week ago
I got my booster shot 3 weeks ago today. I had only a mildly sore arm for the first two shots and no reaction at all to the booster.
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Charles Karcher replied to the topic Mycophenolic acid-Myfortic and CellCept- Side Effects with Myasthenia Gravis in the forum Healthcare and Myasthenia Gravis 8 months, 1 week ago
I take 2000 mg of Mycophenolate Mofetil daily. Presumably we are talking about the same thing. I have been taking the same amount for approximately 18 months. My other Mg medications are Mestinon and Soliris(infusion). The only side effect I experience of the above is occasional diarrhea which I more attribute to the Mestinon than the Cel…[Read more]
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Charles Karcher replied to the topic Hot Baths/Showers and Myasthenia Gravis in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 8 months, 3 weeks ago
Very hot or long showers occasionally seem to lead to slightly labored breathing during the shower. No lasting effect once the shower ends.
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Charles Karcher replied to the topic Immunosuppressants and Going Out in Public With COVID-19 in the forum Coronavirus (COVID-19) and Myasthenia Gravis 9 months ago
Received my third shot today. My county is in the red zone. I am not going anywhere. I am contemplating returning to grocery delivery. I am also canceling a trip for an indoor concert. I was very excited to book the trip after being vaccinated but now consider the trip too dangerous.
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Charles Karcher replied to the topic Immunosuppressants and Going Out in Public With COVID-19 in the forum Coronavirus (COVID-19) and Myasthenia Gravis 9 months ago
I was very excited to be immunized in Feb and Mar to the point of buying tickets for an October indoor concert. Now I am on the verge of canceling the hotel reservation and attempting to sell the ticket. I wear a mask at all times. I have not gone to restaurants or movie theaters and have no plans to do so in the foreseeable future. I was hav…[Read more]
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Charles Karcher replied to the topic Experience Urinary Issues as a Medicine Side Effect? in the forum Healthcare and Myasthenia Gravis 9 months ago
I have frequent need to urinate through the day. I take 400mg of ibuprofen before bed and am able to get through the night with 1-2 trips to the bathroom. I currently take 2000mg of Cellcept, 2x180mg Mestinon long release and Soliris infusion bi weekly.
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Charles Karcher became a registered member 9 months, 3 weeks ago
Hello, Charles! We are thrilled to have you as part of our inclusive and judgment-free community of MG patients, caregivers, and families! Within the Myasthenia Gravis News Forums, we implement a safe space to share and discuss experiences, information, and news and offer guidance and support.
Please familiarize yourself with our forum rules in…[Read more]