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    • #19212
      Jennifer Thompson
      Participant

      Good Evening,

      I have a am wondering if anyone has done IVIG with a blood clotting issue or that has had them in the past? I am researching treatment options and I was told prednisone which I really don’t want to go on along with cellcept. Or IVIG but I had a clot in the past and didn’t know if that might cause issue. I know no one can say of course but I’m just researching.

    • #19225
      Thomas Lee Clark
      Participant

      My entire experience including before MG started with clotting and it was thought to be autoimmune disorder or mediated. There was a DVT in right calf and behind right knee. Then a series of superficial thrombophlebitis. There was never a good diagnosis, but the oncologist and the GP had me on some form of chemo. After a series of double vision events, brain scan, two different ophthalmologists I saw a neuro and got a tensolin  test and finally a thymo operation. I needed to have a coumadin window for the surgery and developed another DVT that hit my lung. They installed a filter in veins and the coumadin held me steady.

      Along came the covid shots and the caution lite went on for me along with my GP. I elected NOT to get JAB and others around did and clotted up and died. These people had had mini strokes and survived. My sister older than me was one of them. She got covid or so it was said clotted up w/o JAB and died. I got the “O” covid and now the symptoms of tiredness and some double vision is starting. It is different in that with one eye covered I see a crazy split vision that comes and goes in both eyes, going for eye exam.  My INR is kept therapeutic range. 2-3 monthly. always asked re MG symptoms and as far as I can tell NONE. Never had cellcept, don’t think IVIG yes on prednisone. Had Plasmapheresis no effect. Thymo did the trick for me.  My wife also had omicron she is tired but not as much as me. What I can say is it is all the time sometimes. Different than anything I have felt thus far. I am glad I did NOT take the JAB.

    • #19228
      Amy
      Participant

      Hello, I have a blood clotting disorder and was told by both my hematologist and my neurologist that I absolutely can not have IVIG. I have had a couple of DVT’s and a PE. I had to take Lovenox injections for 6 months, I was extremely disappointed since it appears to be a treatment that has been fairly successful for a number of MG folks on this forum. Amy

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