Rituximab, what (and when) to expect ?
 

I have SFN and POTS , and my main problem is disabling fatigue.
I got 2 Rituximab infusions, the last one was 5 weeks ago. I was told it might take 1.5-2 months till it works. I don’t feel any improvement yet, I am very tired probably more tired than before the infusions.

Is the effect of the rituximab gradual ? Should I expect any effect after 5 weeks, or is it too soon ?

My skin biopsy result showed severe reduction of nerve fibers. My main symptom is reduced sensation, I also got tingling, burning, numbness etc. If my SFN is caused by autoimmune disorder can the rituximab restore the sensation ? or the best case scenario is it would stop the gradual deterioration ? how long can it take to feel the effect ?

Can the worsening of the fatigue be caused of the rituximab ? should I ask for any tests ?

Have you tried using carnitine for the fatigue?

Carnitine is an enabler of the mitochondria in the cells which produce energy for us. If you want to try this, start at 500mg a day of acetyl carnitine and increase by 500mg a week up to 2000mg a day if you want. You might see good effects lower than 2000mg. Take in divided doses, as it is better absorbed from the GI tract that way.

Thanks!
I haven’t tried it, I will give it a chance.
I am taking B12 (methyl) in the morning, and C, D, E, Calcium, CoQ10 after lunch. Can it interact with the Carnitine ?
To take it with food ?
How long does it takes to know if it is working ?

Rituximab works be decreasing the excessive B cells from autoimmune diseases. It can take a while to work, but most I've talked to noticed at least some mild symptom improvement pretty quick.

Rituximab does NOT regrow nerve cells. It only destroys the B cells. I have not heard of it helping SFN in the way you mention...increasing nerve fibers. That doesn't mean that it destroying the B cells might allow for your nerve fibers to heal over time (after they are no longer being attacked by the B cells)...but I would think (as in ANY nerve regeneration) that it will take a long time.

Thanks for replying. I had high hopes for this treatment, and as the time goes by, without any significant improvement, it is very depressing.
I had some other health problems during and before the infusions, bad side effects to a drug that I had to stop, and a long virus/infection, so maybe they masked the rituximab effect..... hoping for miracles...

Is IVIG better than rituximab for autoimmune SFN ? or both treatments just reduce the antibodies that attacks the nerves ?

IVIG works better (IMO) because it sort of modulates the entire immune system vs going after the one B cell, like Rituximab. There is more documentation for IVIG helping autoimmune based SFN.

Hi stillHoping

As others have pointed out, Rituxmab is a genetically engineered monoclonal antibody which is indicated on-label for treatment of various B cell associated cancers and other diseases.

It has sometimes been used off-label for people with anti-MAG associated neuropathy. There are clinical reports which indicate that it can make things worse, not better, for people with neuropathy (http://www.jns-journal.com/article/S...501-2/abstract.).

I suggest that you talk about this with your care team.

en bloc and kiwi, thank you for replying, I appreciate the info and will read the paper.

The expression "care team" brought a sad smile to my face... I learnt a lot more from this forum than from the doctors... they don't care, and usually even with my brain fog I know better than them...