NeuroTalk Support Groups - Anyone on Soliris?

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- - Anyone on Soliris? (https://www.neurotalk.org/myasthenia-gravis/250514-soliris.html)

Quote:

Originally Posted by sholton6882 (Post 1278911)

I just started the drug Solaris. I just finished my first 5 weeks of getting it every week. So far I have not had any side effects. I am real tired the next day and spend the day in my recliner. Now I will get the Solaris every 2 weeks and continue getting my IVIG every 3 weeks. This is a new drug for MG, but not new to the market.
I had a choice of starting the Solaris or plasmapheresis. I choose the Solaris, because it takes less time and you do not have to get a permanent port put in. Hopefully this will work for all of us. Good luck to everybody.

I have been on solaris for about 7 months. diagnosed 3 years ago and went into crisis 9 months ago for first time. tried ivig, and plasmaphoresis...no help so dr. put me on solaris. infusion every 2 weeks. so far working well. not back to where is was before crisis but am able to be mobile at home. only problem is extreme shortness of breath even though am on oxygen. (I am 72 female and didn't need oxygen before crisis. I went into complete respiratory failure and spent 3 weeks in icu and then 2 wks in hospital ) I have to use a bipap machine to rest my intercostal muscles and diaphragm every day). No real side effects of the solaris except for extreme fatigue for a couple of days after infusion. Hope you are doing well.

Quote:

Originally Posted by Jimintulsa (Post 1257088)

I was diagnosed four months ago with MG. I was in crisis and went in and out of ER and hospital several times. Had plasmapharesis and then treatment was started, IVIG, Mestinon and Prednisone. I didn't respond to the treatment and continued to get weaker and eneded up having a feeding tube put in. Lost 50 pounds total before the tube. October 2017 Soliris was approved for patients that didn't respond to traditional treatment. I was approved by my insurance company and began IV's with Soliris 7 weeks ago. Since it is a new drug for MG there is no history to draw on to know what to expect. Case study information has been limited for patients and Dr's. My case manager for Soliris says to expect it to take about three months to see results. Just curious if anyone else has not reaponded to traditional treatment and what has your Dr recommended?

are you still active on this site jimfrom tulsa? I am also from tulsa and was wondering who your neuro is?

I have been on Soliris for 2 months, after having several crises while on Mestinon and prednisone. Have had plasmapharasis twice and IVG infusions twice. So far no side effects with Soliris and I hope to ease off the other meds, as I don't like the side effects. And they haven't been very effective over the course of 4 years since diagnosis.

I have been on Soliris for about 1 year. For me it was a miracle drug. If I remember correctly, the benefits started very quickly (a few weeks).

I have been on Soliris for 15 months. Initially the change was very dramatic, but that may have been due to both the loading dose (every week) and the residual effects from weekly IVIG. At the beginning I was also taking CellCept (2g/day) and prednisone (30mg/day). After three months I was functioning well enough to start reducing my predinisone.

I am now down to 2.5mg/day of prednisone. I've been on that dose for 2 months but will probably need to increase it a bit since I've become weaker.

Quote:

Originally Posted by Jimintulsa (Post 1257088)

I am on Soliris. Been on it since June 2019. It does take time for you to fell a difference. You should just give it time to work. I was told that it took five minutes for it to start work before you feel a difference. It is help me. I hope that helps you.