Annemarie P
Forum Replies Created
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I am Seronegative for 2 1/2 years now. Still trying to stabilize. I am on Cellcept and IVig every month for 2 days. My veins are giving infusion nurses trouble, veins blowing up, small in size. They have recommended a port. Any pros or cons to having a port placed in my chest?
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Yes, I’m seronegative, not in remission, got Covid. Horrible for 4 days, until day 2 of Paxlovid. Don’t wish that virus on anyone, I can see why it was so deadly. Glad I , at least had my vaccinations!
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I am assuming my team will probably put me on IVIG treatments too. Being Seronegative throws a wrench into most common treatments for MG
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I am seronegative.
71, diagnosed 1 year ago, not much luck with therapy
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So frustrated as well. After more than a year on Cellcept, still have blurry, double vision, weakness after little activity. Meeting with Neuro team next week, maybe they will come up with another idea. Hoping this is not as good as I’ll get!
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I agree!
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Wow, I am so happy you are doing well on Vvgart. There is hope for us Seronegative people.
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I am Seronegative. Â My symptoms are the same as yours, but you are probably Seropositive.
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I hope the FDA is working on allowing us Seronegative patients access to the new drugs.  It is not fair that we have all the same symptoms.  I am getting off long term {1 yr} high dose,[100mg now down to every other day 20mg] Prednisone, Mestinon doesn’t work for me any more, on 2500 mg Cellcept daily.  I have Ptosis, blurry vision later in the day and muscle weakness after short term activity.  It  appears after a year, the Cellcept isn’t helping me much.
Please, we seronegative patients need help too!
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I met with my Neuro beginning of June, she is hoping as am  that the drug gets approved soon for us seronegative people.  So far, one year of Cellcept, 90mg Pred, weaning to 20mg now, gone through Ivig, Plasmapherisis, Mestinon is hard to tolerate and doesn’t really work for me any more.  My drs are going to have a big POW WOW to discuss next course of treatment. Meanwhile, Ptosis worse, muscle weakness worse, and hyperventilating.