Monica
Forum Replies Created
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whack- a- mole
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I went on Ultomris end of December Had a headache nauseous very fatigue 2 weeks later went on the maintence and had a lot of bad side effects ended up in the E.R. doctor took me off it and am now on Soliris again, had been on that for 3 years doing much better. Glad you are doing ok with the Ultomiris maybe one of these days I will try Vyvgart.
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Denise c-pap machines are not good for mg’ers we need to use a bi-pap machine. I used for one 30 days while I was having breathing issues it did help but it was awful could not sleep for more then 4 hours with it on
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Hi It took me over years before I was diagnose My main symptom was issues with breathing and heart flutters. I do have to say Mark if your family doctor has not heard of MG I think I would get a different doctor (my opinion) but I digress. I think I have been on just about every med for MG am now going to start Ultomiris soon I’m on Soliris now.
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I have been on Soliris for almost 3 years I see how much it is here in New York it is 42,000.00each time which you have it done twice a month. I am going to start Ultomiris soon not sure at this time how much that will cost. But will find out Medicare pays for it and what it doesn’t pay my supplement will but still that is ridiculous. IVIG was about 5,500each time and I thought that was bad!
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I was on Imuran a long time ago and it did not help me put me on cellcept and my memory was going so I went off that now on soliris doing much better.
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Hi Robert my name is Monica and I have been on Soliris for almost 3 years been doing very well on it my doctor wants me to start Vyvgart not sure about that but I have been thinking about Ultomiris that seems to me to be more stable as I travel a lot. Is that the one you are going on if so please let me know how it goes thank you and good luck hope what ever it is it works for you.
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I would choke on liquids a lot in the past before Soliris now not so much but it is still liquids that will do me in. Best food is anything that is real moist.
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Hi everyone I have been on soliris for all most 3 years and in the beginning I had some side effects like my neck ached so bad for the longest time I almost went off it but, finally it went away. (though I do have to say that I react to all most everything ) I have been doing great on it so far. Have been thinking about Ultomiris because of just 8 weeks tx. not every 2 weeks. But my doctor really wants me on Vyvgart they were in the study phase for that. I’m a little scare of that for it’s once a week for 4 weeks and then not again until symptoms appear. Which if I’m traveling what happens then? Has anyone taken Vyvgart? please let me know and how did you like it?
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many years ago I had difficulty hearing could not find anything on hearing loss for many years then I tried looking it up a couple of years ago and bingo they had something on hearing loss and MG I know it was from my MG as somedays I could hear very well and others days I could not. I am on Soliris right now but my doctor wants me on Vyvgart no if and or but about it. Not sure if I will as I react to everything (badly)
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Hi my name is Monica and I am new here I’m not a person to type what I want to say I am more of a face to face person but here goes.
I was diagnosed 9 years ago and I think I have had MG maybe since high school as I think back.
My main sx. was SOB I say a pulmonologist and I really give her a lot of credit she ordered a lot of blood test and a MRI and sure enough I have MG. I have been on pred, mestonon, imuran, cellcept, IVIG plasmaperisis and now on Soliris for 2 years. My doctor wants to start that new drug that was just fda approved Vyvgard I’m not sure if I want to as I do travel a lot and you take it once a week for 4 weeks and not again until you havea sxs. and that is what makes me nervous as I don’t want to be somewhere and start feeling bad. I still have good days and bad days,nothing has put me in remission. I also have another rare disease Ramsey Hunt which makes me look like I had a stroke.I sometimes get down about these diseases but then I see other people who are worse off then me.I was havaeing alot of issues at my work also I had to get disability and thank God I got it. I do work 1 or 2 days a week which is just enough.Well enough thanks for listening I need to go and relax talk later.