Harold Summers
Forum Replies Created
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I too was on Soliris until September 2022, when I switched to Ultomiris. I was doing fine on Solaris, but wanted to take an extended vacation overseas to visit with friends and family. Medicare doesn’t allow me to receive my Soliris infusions outside of The States, so I talked with the very helpful Patient Support team at Alexion (Soliris’ maker), and they suggested I talk to my doctor to see if I could switch to their newer (but similar) infusion, Ultomiris. Instead of every two weeks (with Soliris), Ultomiris is administered every eight weeks. On Ultomiris I was therefore able to take that extended trip overseas and be back in good time for my next infusion.
Side Effects: I cannot say that so far, I have experienced any. Soliris & Ultomiris have both worked well for me.
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I started the use of Soliris in April 2021. I could not drive my car before starting Soliris due to the loss of my binocular vision. By the second infusion, my sight was back to normal. Swallowing is normal again, and I am not struggling to chew my food as I had before. The only thing that would throw my vision out whilst on Soliris was exposure to high ambient temperatures so that in the summer I have learnt to stay in air-conditioned locations, meaning little or no outdoor activities. Two weeks ago, I had my last Soliris infusion. This week I received my first Ultomiris infusion (July 2022), so far it has been a seamless transition, given every 8 weeks rather than every two weeks with Soliris. Fewer jabs in my arms, and the prospect of extended visits to family and friends domestically and overseas. I feel very fortunate to have been able to have had Soliris infusions.
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I’ve had MG now for around 8 years. I have an excellent Neurologist now who specializes in MG. I’m 73 years young presently and over the years my doctor has adjusted my Mestinon as required. I think you might ask your doctor to try the generic version Pyridostigmine Bromide 180mg XR. The XR (extended release) should reduce or eliminate your jitters. I take one of these, every 8 hours, and it keeps me on an even keel. I take them, as well as a bi-monthly infusion of Soliris which I can only afford because I am on Medicare. I feel my MG is now well under control and am able to enjoy my retirement even though I have MG. I think the XR medication might be worth a try for you.