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Transitioning to generalized mg.
I have had ocular mg since at least 2011. I have been receiving IVIG since 2014 at a rate of 3 infusions every 4 weeks. About a year ago I was increased to 3 infusions every 3 weeks to try and control symptoms. March 31 I received probably my last IVIG infusion.
My neuro team at VA has been working with the neuro team at Indiana University/ Methodist Hospital on what is the best for me. It appears that Vyvgardt will be the choice and the new medication will start the end of April.
What can I expect with this new medication. Will it be a slow introduction? I understand there will be monthly infusions at home. How does that work? How has the medication affected you? Are you still taking it or did you have to move to another?
I would appreciate you sharing any information on how it worked for you and how long you have been on it, or another medication.
Thanks for the help.
Lou
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4 Replies
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Lou,
Thank y
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Lou,
Thank you for the post. I have been treated with Mestinon and Imuran by the V.A.. Bay Pines, Fl. for GMG for three years now. Since Vyvgart has come to market this is the first time I’ve seen it being covered on the V.A. formulary. I am very interested in following your progress with hopes of maybe using it myself. I have a v.a. appt. coming up May 9th with now my 3rd. neurologist in 3 yrs. They come and go. It also interests me that your V.A. neuro. is also teamed up with the IU Team. Congratulations! How did you manage that?
Good luck,
Marty Kristo
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Lou,
What symptoms took you from Ocular to Generalized? I currently have ocular but feel some other things coming on. I am seronegative so that sort of limits which treatment to use. I am scheduled for five days of IvIG treatment next week because the Mestinon is not working any more. I had Rituxan about 2 months ago without any relief. I, too, am curious to see how this works for you.
Thank you!
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Have had my first round of Vyvgart (4 weeks once a week) now one month off.No change noticed yet.will be starting another round next week.Will let you know.PS no side effects.
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Hello folks. Thanks for the responses so far. I will be studying what you shared with official documents to see what they promise. I will be getting my first infusion next week so I better start studying up. I will share my progress until I get up to speed. I am very run down right now so any change ought to be apparent.
Lou
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- Hello everyone.What changes are you expecting to notice from your medications?! Are the changes obvious? I have used mestinon for 2 months Immediately after I was diagnosed but I Went through a crisis of lumbar pain and discomfort and cramps in both legs so my doctor stopped mestinon and started prednisone. Right now I am dealing with prednisone side effects But I really can’t tell if it is effective or not because I am in the active phase of MG And can’t tell apart the real symptoms from the drug side effects.
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