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Anyone on Soliris?

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Old 01-04-2018, 09:50 PM   #1
Jimintulsa
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Default Anyone on Soliris?

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?
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Old 01-08-2018, 10:01 PM   #2
AnnieB3
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Hey, Jim. How are you (besides the obvious)?

This is so newly approved that I doubt many people are on it. Here is the info, for others here.

FDA Approves Soliris(R) (Eculizumab) for the Treatment of Patients with Generalized Myasthenia Gravis (gMG) | Business Wire

I'm sorry you have not found the right treatment for your MG. That's pretty scary. Are you working? Have they looked into other possible exacerbating factors such as diabetes, thyroid issues, etc.? I hope so.

Have you had any adverse reactions or symptoms on the drug? Write them down, if you do. You can be the first guinea pig!

I really hope this helps you. Have they looked at your immune system, such as IgGs, etc.?

This disease can be really tough. We either have to go on lots of meds to live somewhat normally or be on Mestinon alone and not be able to do squat.

You take care of yourself!


Annie
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Old 01-08-2018, 10:51 PM   #3
Jimintulsa
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Quote:
Originally Posted by AnnieB3 View Post
Hey, Jim. How are you (besides the obvious)?

I'm sorry you have not found the right treatment for your MG. That's pretty scary. Are you working? Have they looked into other possible exacerbating factors such as diabetes, thyroid issues, etc.? I hope so.

Have you had any adverse reactions or symptoms on the drug? Write them down, if you do. You can be the first guinea pig!

I really hope this helps you. Have they looked at your immune system, such as IgGs, etc.?

This disease can be really tough. We either have to go on lots of meds to live somewhat normally or be on Mestinon alone and not be able to do squat.

You take care of yourself!


Annie
The drug is so new I have found no one else on it. Part of the reason also may be that it is for those who did not respond to traditional treatment. First new drug for MG since the 50's. Says a lot about how rare the disease is. I experienced hives and itching with the first IV of Soliris. Benadryl took care of that and until my last IV I was getting Benadryl before the IV. My last IV I tried without the Benadryl and had no adverse reaction from the drug. Got my first bill for the first IV of Soliris...$64,000.00. Not a misprint, it is close to a million dollars a year for my treatment. I had a pretty rough beginning with MG. I was not able to eat at all and barely swallowed my saliva for the first 29 days, then went an additional 41 days with minimal eating and that was just yogurt. Lost 50 pounds and then had a feeding tube put in. I wasn't able to swallow,clear my throat, blow my nose, etc. I had a suction machine to help me clear my secretions. The IVIG was not helping so I was put on 20mg prednisone per day and waited til Soliris was approved and started it right away. I'm much improved, but still a long way to go to get back to "normal" if it ever happens. I can eat but still restricted by what I am able to chew. Swallowing is consistwntly good now. I am not having to use the suction machine right now either. Hoping the rest will catch up soon. I am not able to work. Any real exertion and I have difficulty breathing. Something new to me now is a weakness in my legs and more recently in my arms. It doesn't seem to meet the MG standards of stopping working after repetition, but a general weakness. My Neuro says it isn't MG...... Ok, still is an issue that I have to deal with. I still have a general weakness and tire quickly. I have also started weaning off prednisone and hoping I don't have to start it back up.
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AnnieB3 (04-03-2018)
Old 03-27-2018, 03:32 PM   #4
Rabbit63
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Default Info. On Solaris

Hi, I am new to MG too. I have been on Mestinon for 5 weeks. Initially worked great, but the last couple of days have been bad.

Solaris is also used for Atypical HUS (hemolytic uremic syndrome). Another autoimmune disease that is extremely rare. My brother has it and almost died from it last year. He was given PLEX treatments until they got approval for Solaris. I am sure you know it is extremely expensive. I believe it was over $50,000 per infusion. He had multiple treaments, but it was too late, the disease damaged his heart, lungs and he now is on dialysis. If you search hemolytic uremic syndrome and Solaris, you will find a support group which I believe is sponsored by the drug manufacture of Solaris.

I am curious if you are MuSK positive?

Hope you find some help.
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