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:
http://prntscr.com/klxvfb
http://prntscr.com/klxxk6

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?
 

kyzcreig

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A few updates

1) I tried UC-MSC Stem Cell therapy in Panama at Riordan's clinic. It dampened all inflammatory symptoms. Pretty remarkable and effective but didn't eliminate sensitivities, just dampened their severity. Rituximab eliminated some sensitivities entirely.
2) I tried FMT at the Taymount clinic in British Columbia. I saw no benefit.
3) I may try Rituximab again soon.
 

Learner1

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A few updates

1) I tried UC-MSC Stem Cell therapy in Panama at Riordan's clinic. It dampened all inflammatory symptoms. Pretty remarkable and effective but didn't eliminate sensitivities, just dampened their severity. Rituximab eliminated some sensitivities entirely.
2) I tried FMT at the Taymount clinic in British Columbia. I saw no benefit.
3) I may try Rituximab again soon.
Thank you for the update. This is helpful. I have done 4 Rituximsb infusions and symptoms have improved.

I have looked into stem cells but my doctor who does them is suggesting exosomes and MOTS C peptides. Am on the fence.

I developed an oxalate problem after antibiotics wiped out my oxalate degrading bacteria. Getting them back is difficult. Have thought about Taymount. Do they hace different donors and do they customize to your microbiome or is it "one size fits all"?
 

kyzcreig

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You're welcome.

I almost forgot. I tried one other therapy:
Tocilizumab (Actemra) - an IL-6 inhibitor

It dampened my symptoms like migraines from certain foods but was not more effective than UC-MSC or Rituximab. It is much cheaper though.
 

ChookityPop

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Wow. I had two anaphylactic episodes back in 2013 and are allergic to almost everything. I think I have some kind of histamine intollerance/mast cell disorder. Im allergic to veggies, berries, cats, dogs, pollen etc. How did you guys get IVIG? And Rituximab? I live in Norway so its probably harder to get that here. And how much did it cost?

I get 6ml Immunoglobulins subq and its costs like 80$ here.

I had horrible brainfog from 2014-2017 and I remember Naproxen helped. Im now thinking that my brainfog may have been caused by histamin since the NSAIDS helped with the brainfog.

Any tips on how i could get IVIG and rituximab?
 

Learner1

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I think I have some kind of histamine intollerance/mast cell disorder. Im allergic to veggies, berries, cats, dogs, pollen etc.
You might look into mast cell activation syndrome. Typically, both H1 and H2 antihistamines are used, as well as cromolyn sodium, monoleukast, quercetin, luteolin, and many other substances. See attached.
How did you guys get IVIG? And Rituximab? I live in Norway so its probably harder to get that here. And how much did it cost?

I get 6ml Immunoglobulins subq and its costs like 80$ here.
Gammaglobulins are usually dosed in grams, not ml. One must qualify based on published criteria. One IVIG treatment can cost US$4-5,000 while Rituximab can cost $10,000 for a dose, including administration.
Any tips on how i could get IVIG and rituximab?
Look into your government/insurance criteria for these drugs and compare your data to them.
 

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Peyt

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You're welcome.

I almost forgot. I tried one other therapy:
Tocilizumab (Actemra) - an IL-6 inhibitor

It dampened my symptoms like migraines from certain foods but was not more effective than UC-MSC or Rituximab. It is much cheaper though.
@kyzcreig , thanks so much for your report. I am considering the UC-MSC Stem Cell therapy in Panama , my question is: Did the Stem Cell therapy do anything for your Migraines? ... I would really appreciate your response, thanks
 

Daffodil

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A few updates

1) I tried UC-MSC Stem Cell therapy in Panama at Riordan's clinic. It dampened all inflammatory symptoms. Pretty remarkable and effective but didn't eliminate sensitivities, just dampened their severity. Rituximab eliminated some sensitivities entirely.
2) I tried FMT at the Taymount clinic in British Columbia. I saw no benefit.
3) I may try Rituximab again soon.
FMT really didnt help at all?? That is unusual, I thought most got at least some benefit for a while! If you get migraines, you might want to be assessed for craniocervical instability or just cervical instability...
Would you be able to share the cost of the FMT in BC and also how many treatments you had?
Thank you
 

Learner1

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I went to look up the taymount clinic in BC but it says permanently closed :(
Well, they now seem to have a clinic in the Bahamas.

Perhaps the near permanently closed border between the US and Canada put a damper on their business. I believe it was about US$7k for a course of treatment.
 

Daffodil

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Well, they now seem to have a clinic in the Bahamas.

Perhaps the near permanently closed border between the US and Canada put a damper on their business. I believe it was about US$7k for a course of treatment.
Thanks. I think it probably has more to do with the gov't not allowing the treatment...