Rituximab for MCS and CFS

kyzcreig

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So brief update, I skipped my Rituximab treatment scheduled in Q1 2018. There were a few reasons but it amounted to not being able to leave the country for several months.

After about 7 months of not using Rituximab a few of my B cell markers had recovered and I decided to try something new before resuming Rituximab, which while it helped did not have a lasting effect. There was a risk here in that my immune system had not fully recovered and I would be further immunocompromised.

In May I tried the anti-IL-6 biologic tocilizumab (Actemra). My goal was purely investigative. I had measured PBMC cytokines before with NeuroScience's cytokine panel and IL-6 came out high, at the level of a Rheumatoid Arthritis patient. Sometimes my joints flare based on environmental factors like cigarette smoke, food allergies, but I do not have RA or other RA related markers besides high ANA:
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I benefit from herbs with "potent" anti-IL-6 properties, like Andrographis (R). Would I benefit from an antibody with a clean targeted effect? The answer is yes. My food sensitivities, headaches were reduced but not to the extent they were with Rituximab. I used the subQ version, 162mg every 2 weeks for 1 month. I discontinued use after one month as I was not interested in the side effects that can come with prolonged use and immunosuppression.

I'm currently using IVIG, HBOT and IV nutrition therapy. This all helps but nowhere near as much as the combination of Rituximab and IVIG.

My next plan is to try UC-MSC (stem cells) and/or FMT. I will have to travel outside the USA to do this and am vetting clinics now.

I am excited about HSCT. This is a therapy currently in clinical use for severe cases of MS and other life threatening diseases. It has shown efficacy in curing autoimmune diseases. The procedure involves using chemotherapy and radiotherapy to kill off your immune system and then reseeding it with previously harvested or donated blood marrow stem cells, which would rebuild your immune system. Your immune system is essentially reset. You need to get all your vaccines again.

HSCT can totally cure autoimmune problems but the adverse effects are not for the faint of heart. Besides increasing risk of cancer, new autoimmunity, and sterilization, it can result in death.

Researchers are working on safer versions of the therapy based on antibodies rather than chemotherapy and radiotherapy:
https://www.sciencedaily.com/releases/2016/08/160810180655.htm

This has shown efficacy in mouse models. If it translates to humans it could revolutionize treatment of autoimmunity.
 

Learner1

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I'm currently using IVIG, HBOT and IV nutrition therapy. This all helps but nowhere near as much as the combination of Rituximab and IVIG.
I am doing the same things except have not yet tried Rituximab, but am considering it and am investigating stem cells as well.

Why not stick with Rituximab/IVIG for longer?
My next plan is to try UC-MSC (stem cells) and/or FMT. I will have to travel outside the USA to do this and am vetting clinics now.
Mesenchymal stem cells or cord blood stem cells? Does FMT mean fecal microbiota transplant or something else?
I am excited about HSCT. This is a therapy currently in clinical use for severe cases of MS and other life threatening diseases.
One of my doctors says she has a patient cured from MS after 27 mesenchymal stem cell treatments at $9,000 each. Thats a lot of money...I've talked to 2 other doctors who have done stem cells and they are skeptical. They say stem cells can be an immunomodulator at best, but are not likely a cure.

Where is the data that says it will work for folks like us?
It has shown efficacy in curing autoimmune diseases. The procedure involves using chemotherapy and radiotherapy to kill off your immune system and then reseeding it with previously harvested or donated blood marrow stem cells, which would rebuild your immune system. Your immune system is essentially reset. You need to get all your vaccines again.

HSCT can totally cure autoimmune problems but the adverse effects are not for the faint of heart. Besides increasing risk of cancer, new autoimmunity, and sterilization, it can result in death.
As a cancer survivor, this makes me nervous. My dad was in the clinical trial for Rituximab and had a stem cell transplant which put his non-Hodgkin's lymphoma into remission, but he got shingles quickly afterwards in his optic nerve, then had a stroke, which devastated his cognitive capabilities, had hemolytic anemia on several occasions and died, riddled with cancer. His treatment was at a top cancer research center...
Researchers are working on safer versions of the therapy based on antibodies rather than chemotherapy and radiotherapy:
https://www.sciencedaily.com/releases/2016/08/160810180655.htm

This has shown efficacy in mouse models. If it translates to humans it could revolutionize treatment of autoimmunity.
This looks interesting, but probably a long wait for folks like us.

The questions that are coming to mind are, how do we know which of these treatments will work on each of us? Stem cells are helpful in orthopedic uses currently, and for cancer patients. But, from the experts I've listened to and read, all of this is still in the fringes.

I'm willing to try new things, but one thing I learned in the cancer world is that some choices cannot be reversed, and they can have devastating consequences.

Figuring out what each of these treatments do exactly, who they will work on, under what conditions, and seeing some successful data from real people, not mice, would give us all a lot more hope. Is anyone doing this anywhere in the world?

Thanks for bringing this up...
 

Gingergrrl

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This all helps but nowhere near as much as the combination of Rituximab and IVIG.
Why not stick with Rituximab/IVIG for longer?
@kyzcreig I was curious, too, re: what @Learner1 asked? If the other treatments are not working nearly as well as the combination of Ritux & IVIG, why did you switch? Was it insurance driven or for another reason?