Rituximab: Is it worth a try?

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Hello,

I am diagnosed with neuropathic POTS and SFN. Although I have various symptoms, the worst one is a crushing and unrelenting fatigue which never goes away. As a result of this disabling fatigue, I has been bed/couch-bound the last 2.5 years.

During this time, I have attempted numerous treatments but nothing seems to work for me. Having reached this point, my doctor considers that I should try Rituximab. However, leaving aside the potentially important side effects of Rituximab, I have serious doubts about this treatment for different reasons:

1) I have already attempted different immunotherapies with null results, including:

-IVIG (two cycles of 2g/kg over two months).
-Plasmapheresis: Five sessions.
-Cellcept: Three months.
-Pulse steroid therapy.

2) I feel that my lab data may not be very compelling for autoimmunity (which may explain why the treatments mentioned above did not have any effect on my symptoms):

-ANAs: Positive during the first two years of my illness. Titer 1:160 (speckled pattern). Currently negative.

-Positive GPCR aabs (CellTrend tests). Here there may be a potential problem, as a recent study finds no differences in GPCR aab concentrations between patients with POTS and healthy controls when using CellTrend tests (elisa).

https://ahajournals.org/doi/abs/10.1161/CIRCULATIONAHA.122.059971

-Positive FGFR-3 aabs.

-Borderline alpha3-AChR.

Despite these facts, my doctor considers that Rituximab is likely to be my last option to try to improve. Nevertheless, this is a difficult choice for me. On the one hand, I am really desperate to find a treatment that works. But, on the other hand, I do not want to finish in a worse situation (I have read here various examples of people whose lives were virtually destroyed by Rituximab).

What do you think? Do you consider that Rituximab may deserve a try in my situation? Or is it too risky?

Many thanks in advance for your help.
 
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No evidence that rituximab is effective for MECFS.
https://pubmed.ncbi.nlm.nih.gov/30934066/
Yes, I know that Rituximab is not a one-size-fits-all treatment for ME/CFS. However, at the same time, there are also patients with a ME/CFS diagnosis who have obtained significant benefits from B cell depletion using Rituximab. Although obviously I am not an expert on this issue, I think that Rituximab may be useful in patients who have a known, proven history of autoimmunity.

In any case, I do not fulfill the ME/CFS criteria, since I do not experience PEM. Most importantly, according to my doctor, my POTS and SFN appear to be auotimmune driven. Nevertheless, as mentioned above, I have doubts on this point and I am not sure if I would be a good candidate for Rituximab.
 

Learner1

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No evidence that rituximab is effective for MECFS.
https://pubmed.ncbi.nlm.nih.gov/30934066/
It is now well known that ME/CFS is not one single disease entity, but a common set of symptoms driven by a variety of factors. Therefore, there are a variety of treatments that may be applied with differing results amongst the variety of patients who share this label.
@Butydoc ,@Learner1, and @Gingergrrl might be able to answer this. They all have experience.
Yes, and our experiences differ.
Yes, I know that Rituximab is not a one-size-fits-all treatment for ME/CFS. However, at the same time, there are also patients with a ME/CFS diagnosis who have obtained significant benefits from B cell depletion using Rituximab. Although obviously I am not an expert on this issue, I think that Rituximab may be useful in patients who have a known, proven history of autoimmunity
This is correct.
In any case, I do not fulfill the ME/CFS criteria, since I do not experience PEM. Most importantly, according to my doctor, my POTS and SFN appear to be auotimmune driven. Nevertheless, as mentioned above, I have doubts on this point and I am not sure if I would be a good candidate for Rituximab
If autoimmunity is a driver for your situation, it may be worth a try. It greatly reduced my POTS. It is difficult to access and doctors may be hesitant to prescribe it in a COVID world, unfortunately.
 

Treeman

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I have been couch/bedbounbd for 5 years. I tested positive for ANA and TPO autoantibodies. However they have now disappeared. Also have been making a very slowly recovery.

I recently have been dabbling with steroids and for the last 10 days have settled on 2.5mg a day with some noticeable improvements.

What dose and length of time did you try steroids?
 
Messages
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I have been couch/bedbounbd for 5 years. I tested positive for ANA and TPO autoantibodies. However they have now disappeared. Also have been making a very slowly recovery.

I recently have been dabbling with steroids and for the last 10 days have settled on 2.5mg a day with some noticeable improvements.

What dose and length of time did you try steroids?
I took 15 mg of prednisone over ten days. In view of the null effect, I also received intravenous high doses of steroids during three consecutive days. But it did not work.
 

Gingergrrl

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"Rituximab: Is it worth a try?"
I'm not sure how to answer this question because each person's situation is so unique. For me, the answer was 100% yes that it was worth it because it was the right treatment for me and led to my remission (in conjunction with IVIG). But in other cases, I would say that it would not be the right treatment.

I would say if someone has an autoimmune disease (or known B-cell autoantibodies that are pathogenic), and had zero active infections (and no history of hepatitis or TB), and was first a responder to high-dose IVIG, then Rituximab makes sense. It kills the B-cells which stops new autoantibodies from being grown at the production level which IVIG cannot do.

But in light of Covid, it is much more risky. So I would view it as a total cost/benefit risk analysis taking every factor into account. I hope that makes sense?!