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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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AnnieB3 (01-08-2018)
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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Old 07-02-2019, 02:41 PM   #5
Boyd Ross
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Default Solaris

I have been on Solaris for 6 Mo.{doing very well}, after 13 years. I had a MS crises and spent one week in the hospital. I take infusions of solaris every 2 weeks an IVIG EVERY 3 weeks, I am 82 years old. It is very expensive but medicare has paid the full amount so far. $28,000 per visit for solaris and $6,000 per visit for IVIG infusion.
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Old 07-10-2019, 12:31 AM   #6
Juanitad
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Went on Soliris in March 2019 after 19 years of mg. Have been on IVIG for about 15 years with mestinon and immune suppressant drugs. Have been able to stop IVIG completely and am doing the best I have done in years. I did have 2 mg crisis last year, 3 weeks in ICU with the first one and 4 months in hospital with second one (1 month in ICU and 3 months in rehab after I had to get a tracheostomy), I can't talk now because of the trach and I thought I would never walk again after being in a hospital bed for 4 months. Also, between the 2 hospitalizations, I had extreme pain in my low back to the point I could hardly do anything. I've had back problems my entire life and thought it was just another back issue. After 3 months of agony, I had a CT scan and MRI and discovered I had an infection in the spine at L3 & L4 and infection in the area around the spine. They put me in the hospital immediately and started heavy duty IV antibiotics which led to the 4 months hospitalization because for me, a hospital is no place to get rest. Instead I always end up with a mg crisis if I have to be hospitalized for anything else.

All this rambling is to say that I have been on a lot of treatments for mg over the years and Soliris has done more for me than any of the others. I am now on one 45 minute infusion every 2 weeks and hopefully this will work for me for years to come. I am 69 and have been retired for 9 years.

Good luck and I hope it works for you as well as it has for me.
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Old 07-21-2019, 03:47 PM   #7
alfredsr7
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Hello all, I am new to the group and here is my questions. I am reaching out to anyone who has had any experience with the drug soliris. I have been on IVIG since 2016. I get it on a monthly basis for five days a month. Lately there has been a shortage and my Doc want to change me drug to Soliris. I do not know enough about it and neither does she. I know it has some side effect.

I know there is a process in geting it. But I don't know if it works or if its worth the change. I would like to talk to anyone who has any information. How much does insurance cover? I have a lot of questions and don't know where else to turn for answers. I will give my number and whoever want to talk about it and give me some information. Thanks, Al
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Old 07-21-2019, 09:12 PM   #8
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Hi Al

Welcome to NeuroTalk .

This information about reported side-effects of Soliris might help you.

Soliris Side Effects: Common, Severe, Long Term - Drugs.com

All the best.
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Old 08-15-2019, 10:56 AM   #9
gr8ful
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Default Great results from Soliris ....so far

I hope everyone is doing well (or as best they can). I was diagnosed as ACHr positive MG in 2013, had a thymoma removed and was put on mestinon, mycophenolat and prednisone. I did reasonably well for several years but symptoms returned and put me in bed for months. My doc then prescribed Rituxin which worked for about 6 months and then weakness started again.

I have now been on Soliris for about 1 year and it's working great. I'm not 100%, but I think being 90% is pretty amazing. I have no side effects except for a bit of fatigue immediately following infusion. My main worry is the cost of the drug. I have a great insurance plan, but you never know when that could change.

There are a lot of logistics to get on the drug. Your doc, insurance company and drug maker all have to be 'on board' and that took some time and lots of effort.

If I had to make one main point, Soliris can relieve MG. There is hope for those people who don't respond to 'normal' therapies. Don't give up!
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Old 08-15-2019, 05:14 PM   #10
sholton6882
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Quote:
Originally Posted by Jimintulsa View Post
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?
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.
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