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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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I'll echo all of that. RTX is not known for causing chemo brain in the very large numbers of cancer Pts worldwide, nor in ITP patients. If there is something peculiar that happens in CFS patients, I don't know but there is probably not enough experience yet with CFS patients to say if it is a rare reaction.A one person antidote :
An 85+ family member is on Rituxan for lymphoma. They have been since last September. No chemo brain. And they have some other heavy hitting chemo drugs in combination.
Rituximab is a biological, not considered a typical chemo. We specifically asked oncologist about that stuff considering the person's age.
I have not heard of any RA patients getting that ( I have been talking to my rheumy about it)
Maybe you could check an RA forum ?
My intent is not to scare you or upset you. Apologies if it has. But I thought you would want more information.
I am wondering if this is may be a ME/CFS thing.
I would be very interested to hear what your treating physician(s) have to say about it.
It's only for the infusion reaction. As B-cells get lysed and spill their contents (some of those contents being signaling chemicals), mast cells get signaled to degranulate their histamine. Also, the number of B-cells gets lower and lower with each infusion, so the first would typically give the worst reactions. OTOH, if any particular person has rash or other symptoms, then it's probably worth a try to keep taking the anti-histamine. Then again, a tolerance is quickly built up anyway.Something I have not seen anyone w/ ME/CFS post about their rituxan experience. Do you only take Benadryl on infusion days ? or do you take it every day ongoing ?
It's only for the infusion reaction. As B-cells get lysed and spill their contents (some of those contents being signaling chemicals), mast cells get signaled to degranulate their histamine. Also, the number of B-cells gets lower and lower with each infusion, so the first would typically give the worst reactions. OTOH, if any particular person has rash or other symptoms, then it's probably worth a try to keep taking the anti-histamine. Then again, a tolerance is quickly built up anyway.
What I saw being used those 5 years ago was IV Benadryl, and oral Tylenol. No dex at all, although dex has some small amount of cytotoxicity and is otherwise used as an anti-inflammatory with regular chemo drug regimens (like CVAD).Lymphoma protocol they have family member on small dose Benadryl BID. ( larger IV amt. infusion day along w/ dexamethasone) Dr. is fond of saying drug still working in system long after infusion. Not sure of specific reason.
FWIW -Family member has had hardly any SEs on this med. Nothing like the ME/CFS persons blogging or posting about being on it. Wondering what the differences in protocol might make a difference or if it is just the disease specific reaction ?
My personal belief is that RTX affects the B-cell signalling in CFS and that is its main effect in CFS - when it happens. Also, what generally gets forgotten is Mella & Fluges' statement that their first, serendipitous patients had a quick onset of action, unlike their actual study patients - which argues against autoantibodies.
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Hi, Beaker. In my case, I think it's more autoinflammatory than autoimmune - along with an ordinary virus that flares it all up from time to time... and an ordinary virus that started it all.I got sick after cooking and eating dinner for friends. They got sick too. Another friend was there, who didn't eat. They didn't get sick. Was it something in the food ? Was it something I picked up and passed on through cooking ? ( I had been up to Tahoe skiing a week or two or so prior. Oh and almost forgot. Person at work(small office) sick and couple others w/family members sick)
There is absolutely no way I can believe there isn't some type of infectious agent-- either as trigger of another dormant agent or in and of itself. Whether or not that agent kicks in some long term type auto immune response I don't know. Or effects signaling per your post. Or
There is also the theory that infectious agent lives in B cells. The delay ? Lots to kill off and system to turn around and be in "normal" functional mode again.
< giant sigh> It's all a mystery. At this point, I care less and less about the what and why. Only how. How to get better -- to any significant degree. Of course, that's been the point all along........... so many many many freaking years.
ETA apologies dsdmom for getting away from your original question.
I wanted to just add that maybe going and looking at the other protocols and the prophylactics used ( like the ongoing benadryl dosing) might help you with your side effects...... If they are somehow from the drug or reaction to the drug. ( even if it is a response specific to the med only w/ ME/CFS ) Something to ask your treating physician.
....Wow..... that makes me a little less or more worried!!! I am most DEFINATELY dealing with chemo brain which i had no idea there was such a thing!! I have been REALLY REALLY worried lately because I just feel like I am slipping and my brain is basically just turned off... I am never on this site any more bc I can't think to read the articles posted. It is as if I have no comprehension of anything... Brain fog has always been a constant...but this is so far beyond that!! The other day I was sitting at a stop light and I had to really "think" if the GREEN light meant GO! I have seriously thought lately that if this gets any worse - I would wonder if I have the beginning of Alzheimers. It is scaring the crap out of me! I am still no better from the Rituxan so we are going to add Valcyte to the mix. I have now had 4 infusions. I do have somewhat less flu like symptoms but I had spells of that before starting the Rituxan. Beyond Frustrated. Thank you for the post tho it at least gives me an explanation. Thanks.