My Rituximab experience with RA and ME

[Helen]

I missed the reference to the B cell measurements. To be honest nobody else has found this sort of result with B cells and also the measurements used are inappropriate so one cannot really make much of it. I don't think this gives any indication of 'B cell immunodeficiency' or has anything to do with rituximab.

I have the same question as Nielk in the post above.
What caught my interest in the study, though methodological questions arises, was the very good subjective result from supplementing with folate in the folinic form, in (extremely) high doses, 25 mg 3-4 times a day for 1-2 months.

"Thirty-four patients (81 %) reported significant subjective improvement with increased energy level and reduced pain within 2 months (Table 1). No patient reported side effects from folinic acid. Responses were documented in all CFS patients regardless of their co-morbidities or EBV antibody status (Table 4)."

Earlier in the text: " Folate metabolism plays a central role in human leucocyte development and function (30-33). It is therefore plausible that the inappropriate antibody responses of CFS patients are in part owing to an underlying folate deficiency". Would be interesting to get your comments on this; if the first statement is medical consensus?

Sorry @Nielk to be a little off topic, but your link brought up folate deficiency and folate metabolism in CFS again.

@Jonathan Edwards, I cross-posted. I will read your reply to Nielk. Thanks.

 

[Jonathan Edwards]

I have the same question as Nielk in the post above.
What caught my interest in the study, though methodological questions arises, was the very good subjective result from supplementing with folate in the folinic form, in (extremely) high doses, 25 mg 3-4 times a day for 1-2 months.

"Thirty-four patients (81 %) reported significant subjective improvement with increased energy level and reduced pain within 2 months (Table 1). No patient reported side effects from folinic acid. Responses were documented in all CFS patients regardless of their co-morbidities or EBV antibody status (Table 4)."

Earlier in the text: " Folate metabolism plays a central role in human leucocyte development and function (30-33). It is therefore plausible that the inappropriate antibody responses of CFS patients are in part owing to an underlying folate deficiency". Would be interesting to get your comments on this; if the first statement is medical consensus?

Sorry @Nielk to be a little off topic, but your link brought up folate deficiency and folate metabolism in CFS again.

Yes but there were no controls, the study was open and the patients are bound to say they are better so as to keep in the good books of the researcher/carers. It would be impolite to say you were not 'much better thanks' certainly in England! This makes PACE look rather well designed.

Folate is central to every cell inasmuch as a hundred other small molecules are central and essential. But I can see no reason why these people should need more folate. Folate deficiency is not associated with low B cell counts as far as I know - it gives you anaemia. Sorry, but to my mind this is all very woolly wishful thinking that has no relation to proper science.

 

[jalle6673]

I was due for my next set of Rituximab infusions two weeks ago. It took some time to get approval again from mytreatmente carrier. I had appointments all set up for Jan. 22 and Feb 4th, I took preliminary bloodtests.

My doctor called me that she had to cancel the infusions based on the results of my bloodwork. My B-cells are still non-existent. I was surprised to hear that. I guess that would have been good news if I would have seen improvements from the Rituximab. I would have seen continued improvement in my condition.

Unfortunately, that is not the case. I have seen no improvement in my ME symptoms as well as my RA ones. I am back at square one.

Since no treatment so far has worked for my RA, my Rheumatologist said that she wants to discuss my case and what the next step should be with her colleagues and she will get back to me in a few days

@Neilk, Have you tried any antibiotic therapy, like minocycline? A book written by Dr. Brown that talked about good responses for RA with long-term antibiotic treatment. Minocycline is sometimes used for CFS/ME, too. Just a thought. I'd take probiotics with it though, if it were me.

 

[Rlman]

@Nielk just wanted to say that the blogger of the website phoenixhelix.com has seen significant reduction of her RA symptoms through an autoimmune paleo diet. Probably everyone responds differently but thought I would share that in case it could be of help.

 

[Gingergrrl]

@Nielk I cannot thank you enough for linking me to this thread from 2014 & 2015 which chronicles your journey with Rituximab. As I was reading it, I realized that I had read it before, and that the month you started this thread (June 2014) was the same month that I joined PR. Ironically, even though I posted in this thread back then, I had virtually no knowledge of Ritux and (at that time) I'd thought that you were a male named "Neil K." (I need the face palm emoji here ). It is incredibly helpful to re-read it now as I will be having my first Ritux infusion in only 2 weeks! (I have a separate thread for that and won't get off-track about that here)!

It's funny that you call me brave because I remember about two years ago, answering a poll on Rituximab here on PR. It was asking whether if the possibility existed, would've agree to try Rituximab. I had answered- no. The reason being that I was so sick and was afraid to take the chance of exacerbating my condition.

I wanted to echo that you were very brave. You also were not alone re: how you replied to the poll and I believe that there was a poll in which I also said that I would not try Ritux b/c it was too dangerous! But at that time, I had no idea that my illness would turn out to be autoimmune.

It is typical of a smart person to change point of view and make decisions based on sound and scientific assessments.

I totally agree with this comment @NK17 made to @Nielk and now find it very reassuring for the moments when I start to doubt my own choice. I know you are not reading this now but thank you @NK17 for this and a million other things.

In fact the scratchy throat and coughing we always thought was due to the drug doing its work on the tonsil B cells - not an allergy but a sign that things were going to plan.

@Jonathan Edwards That is so interesting and I have never heard that before! So a scratchy throat and coughing during Ritux can actually be a good sign that it is working on the tonsil B cells?!!! Who would ever know that? (besides you of course)! My worst fear of Ritux is anaphylaxis and the throat starting to narrow (which I experienced in 2015 from food) but now I will know that if the throat just gets scratchy/cough, there is another possible explanation.

The continuing absence of B cells at 7 months is fairly standard - they can come back any time after 6 months. It is not a problem them still being low but there would be little point in having another rituximab infusion now if they are.

In your opinion (in general and NOT about Nielk), if someone did Ritux for autoimmunity and had total B cell depletion at month six but no benefit, would you advise them not to do another Ritux infusion? I assume the infusion at month three you would advise them to do, b/c it is too early to tell if it has worked for sure. But if no benefit by month six, is it worth doing more? Thank you in advance!