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Solaris

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Old 10-20-2018, 04:54 PM   #1
johntdyer
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Default Solaris

Is anyone on Solaris ? Iím looking for feedback. It seems to be so new I canít 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 Iím not seeing anything from Ivig. Iíve 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 thatís been on the treatment ?




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azwild (10-24-2018)
Old 10-20-2018, 05:52 PM   #2
kiwi33
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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.
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Knowledge is power.

Last edited by kiwi33; 10-20-2018 at 11:52 PM. Reason: Fixed typos.
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Old 10-21-2018, 12:53 PM   #3
4-eyes
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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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Old 10-24-2018, 08:47 PM   #4
azwild
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Default hi johntdyer

Quote:
Originally Posted by johntdyer View Post
Is anyone on Solaris ? Iím looking for feedback. It seems to be so new I canít 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 Iím not seeing anything from Ivig. Iíve 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 thatís been on the treatment ?




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hi john last visit at barrow in phx dr brought up my progression and felt that soliris would benefit me he currently manages 9 patients with soliris and said the results were amazing keeping exacerbation in check ,meet with him next week as i was hospitalized 3 times in last month ,talked with a woman who was on soliris for 9 years its used for PNH a bone marrow disorder ,she said no side effects just that it only worked 50 % of the time ,she is in a trial for a new drug phase 3 and gave up solaris and is doing excellent ,also on cellcept 1000 mg prednizone 40 mg,mestinin 60mg 3x and ivig 120gr every 2 weeks increased from every 3 weeks home infusion 2 days i also have a bone marrow disorder

Last edited by azwild; 10-25-2018 at 06:38 AM.
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Old 11-02-2018, 06:41 PM   #5
dhackle
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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.

Quote:
Originally Posted by johntdyer View Post
Is anyone on Solaris ? Iím looking for feedback. It seems to be so new I canít 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 Iím not seeing anything from Ivig. Iíve 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 thatís been on the treatment ?




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Old 11-02-2018, 09:22 PM   #6
azwild
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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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