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Old 01-13-2016, 05:35 PM #1
JoannaP79 JoannaP79 is offline
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Default Rituximab

Hi all,

Is anyone here or has anyone here been administered Rituximab for their SFN? I can't recall who suggested it to me but I'm sure some of you may have been put on it for suspected autoimmune SFN. Do you know if its easier to access than ivig? I'm in the UK.

:-)
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Old 01-13-2016, 09:37 PM #2
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It was harder to access than IVIG for me (USA) I had to go through several appeals with anthem BCBS insurance company to get it covered. I had no problems at all with coverage for the IVIG.
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Old 01-13-2016, 10:14 PM #3
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As northergal said, it can be harder to get approved than IVIG...as it is NOT FDA approved for SFN. I think the only thing actually approved for in regards to autoimmune based conditions, is Lupus.

It also has some hefty side-effects.
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Old 01-14-2016, 10:22 AM #4
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Quote:
Originally Posted by JoannaP79 View Post
Hi all,
Is anyone here or has anyone here been administered Rituximab for their SFN? I can't recall who suggested it to me but I'm sure some of you may have been put on it for suspected autoimmune SFN. Do you know if its easier to access than ivig? I'm in the UK.
:-)
I suggested to consider Rituximab.
I got rituximab after I couldn't get an approval for IVIG. But my story is complicated, it’s not just for SFN...
My doctor could prescribed both of these treatments off label, and then it was either getting the approval of the insurance company, or paying for it by myself.

I don't know how is it in UK, here it seems that Rituximab is less expensive than IVIG. the price of a single infusion is roughly the same, but according to my neuro it might take 10 IVIG infusions or 2 Rituximab infusions over the first 6 months to estimate whether it helps.
So if your doctor is ready to prescribe IVIG and Rituximab, but you can't get the approval of the insurance company you might consider paying for rituximab.
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Old 01-15-2016, 06:51 PM #5
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If the Rituximab doesn't work, will they consider moving onto/approving IVIG? I hope it works, but that if it doesn't, you can get IVIG, and that it works.


Quote:
Originally Posted by stillHoping View Post
I suggested to consider Rituximab.
I got rituximab after I couldn't get an approval for IVIG. But my story is complicated, it’s not just for SFN...
My doctor could prescribed both of these treatments off label, and then it was either getting the approval of the insurance company, or paying for it by myself.

I don't know how is it in UK, here it seems that Rituximab is less expensive than IVIG. the price of a single infusion is roughly the same, but according to my neuro it might take 10 IVIG infusions or 2 Rituximab infusions over the first 6 months to estimate whether it helps.
So if your doctor is ready to prescribe IVIG and Rituximab, but you can't get the approval of the insurance company you might consider paying for rituximab.
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Old 01-15-2016, 09:03 PM #6
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Hi JoannaP79

Rituximab has been used to treat people with anti-MAG associated neuropathy.

There are some case reports which suggest that it can make it worse, not better (http://www.jns-journal.com/article/S...501-2/abstract).

This is something that you could discuss with your prescribing doctor(s).
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Old 01-15-2016, 10:45 PM #7
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Joanna,

There is another thread about Rituximab that you might want to read. Here's the link:

http://neurotalk.psychcentral.com/thread231068.html
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Old 01-16-2016, 02:59 AM #8
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Quote:
Originally Posted by DavidHC View Post
If the Rituximab doesn't work, will they consider moving onto/approving IVIG? I hope it works, but that if it doesn't, you can get IVIG, and that it works.
Thanks, it seems unlikely my insurance company approve the IVIG without definite autoimmune diagnosis.
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