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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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10-20-2018, 03:54 PM | #1 | ||
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Newly Joined
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Is anyone on Solaris ? I’m looking for feedback. It seems to be so new I can’t find anyone talking about their treatment on any of the usual groups.
So my history.. I recently underwent a relapse after we tried to ween me of Cellcept. After relapsing bad we went back to full dose on everything. * 2000mg/day cellcept * 20 prednisone, * 60mg mestinon 4-5 / day * Ivig 3 days every three weeks However even with all this for 3 months I still often have symptoms. At my last doctor is suggesting I try Solaris since I’m not seeing anything from Ivig. I’ve been doing my research and the side effects look pretty scary. I have great insurance so if I proceed it will be covered 100%... Any feedback from someone that’s been on the treatment ? Sent from my iPhone using Tapatalk |
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"Thanks for this!" says: | azwild (10-24-2018) |
10-20-2018, 04:52 PM | #2 | |||
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Grand Magnate
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Hi John
Welcome to NeuroTalk . I hope that other members will be able to offer you feedback (I don't know enough about MG to say much that is helpful). Best wishes.
__________________
Knowledge is power. Last edited by kiwi33; 10-20-2018 at 10:52 PM. Reason: Fixed typos. |
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10-21-2018, 11:53 AM | #3 | ||
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I know someone who used it with excellent results. Really life-changing!
We often need the "big gun" meds if nothing is working and quality of life is poor. I've been using Rituxan with miraculous results for almost 2 years now. However, the potential side effects were so scary, I had to get to the point of being willing to die in order to feel better. Once I received the treatment, I only regretted waiting so long. Good luck! |
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10-24-2018, 07:47 PM | #4 | ||
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Junior Member
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Quote:
Last edited by azwild; 10-25-2018 at 05:38 AM. |
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11-02-2018, 05:41 PM | #5 | ||
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New Member
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Covered by insurance? I read that it is $750,000 per year and is very effective for those with severe conditions.
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11-02-2018, 08:22 PM | #6 | ||
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Junior Member
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hi just saw dr tuesday we are going to switch to soliris slight delay with insurance, as was sent to non participating insurance provider .hopefully will be straightened out by next week , dave
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"Thanks for this!" says: | 4-eyes (11-03-2018) |
01-03-2019, 12:11 AM | #7 | ||
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Junior Member
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I have been taking Soliris for about 5 months. For me, it's magic. After my 1st two doses I felt like I was in 95% remission. So far there's no sign of it reducing the positive effects. Last summer I was fully functional on even the hottest days. It was a good feeling to not have to think about staying cool all the time.
I receive 1200mg every two weeks. There's a little sensation after infusion, but it's mild. Currently, you must be AcHr positive for the drug to work. The worst part is the cost. If I didn't have great insurance I would have to pay $400,00 per year. My Neuro says they are working on some new drugs that will cost less. I hope you are all doing well. I am almost forgetting about MG on many days. It's a good drug. Be careful to get all 'i's' dotted and 't's' crossed with your insurance company. I had to be my own advocate getting my Doc, my insurance company and the drug company (Alexion) on board. Good luck. Be your advocate. Regards |
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"Thanks for this!" says: | azwild (01-03-2019) |
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