My Rituximab experience for ME

[leokitten]

Isn't MS usually considered a T-cell mediated disease? Or do you think this interpretation is incorrect, akin to those chasing after T-cells in RA? How about the seronegatives and IBD (which of course are not antibody mediated)? The latter at least seem to be IL-17 driven, given the success so far of secukinumab (phase 3 trial published recently - looked good) and ustekinumab. Perhaps autoantibodies in MS though are a secondary phenomenon?

The evidence that MS is more likely B-cell mediated (or has a mostly B-cell driven mechanism) has been growing since 2008.

In 2008 Stephen Hauser from UCSF published the landmark study in NEJM, results of a phase II clinical trial of rituximab in relapsing-remitting MS (RRMS), showing very impressive efficacy.

B-Cell Depletion with Rituximab in Relapsing–Remitting Multiple Sclerosis

This was so revolutionary because it was the first evidence challenging the then current dogma that MS was definitely a T-cell mediated disease, it's not.

MS research really shifted after this. The only reason you don't see rituximab as an FDA-approved drug for RRMS today is because of standard pharmaceutical industry evil behavior. Roche/Genentech knew that rituximab would be at the end of its patent when a phase III trial completed and they refused to fund any phase III trial. Instead they made the medical community completely start the process over with their new 3rd gen CD20 drug ocrelizumab. The OPERA I and II phase III trial results of ocrelizumab in RRMS and secondary-progressive MS (SPMS) should be published soon, preliminary results showed almost identical efficacy to rituximab. But as of today there still is no FDA-approved CD20 drug for MS where if they went forward with rituximab it would've been approved and in use for a while now.

While rituximab was not so effective in primary progressive MS (PPMS), a more severe version of the disease, that did not mean that PPMS didn't have a very significant B-cell mediated component. In fact the 3rd gen ocrelizumab is the first drug shown to be effective in PPMS, preliminary results of the ORATORIO trial should also be published soon. In fact to me PPMS is a great example where rituximab doesn't work but the B-cell hypothesis is not wrong because the more potent ocrelizumab has much better efficacy. We should keep this example in mind when people challenge that rituximab doesn't work in a subset of PWME because they think they don't have the same disease (e.g. chronic infection) when in fact it could just mean that rituximab is less effective in this cohort for as yet unknown reasons.

A good blog post on the history of rituximab in MS here:

The Shameful Story of Rituximab in Multiple Sclerosis

 

[leokitten]

MS may be somewhat unique among autoimmune diseases though, and may not be subject to the same processes as the diseases treated by rheums more than neurologists (although I'm not sure where that distinction came in - maybe @Jonathan Edwards has an opinion on why MS is an autoimmune disease treated by neuros, and almost all others are treated by rheums). Is it just historical artifact?

There are a number of autoimmune diseases treated by neurologists, neuros treat those which have their predominant effects in the brain/CNS. In addition to MS some examples:

myasthenia gravis, Guillain-Barré syndrome, polymyositis, nmda receptor encephalitis, neuromyelitis optica, neurosarcoidosis, autoimmune channelopathies, etc.

 

[morse27]

Wasnt molecular mimicry suggested / involved in the narcolepsy cases following H1N1pandemic vaccination ?

H1N1 immunization with PANDEMRIX wich countain strong adjuvant "squalene" make boost on TH1 and TH2
the highest immunologist yehuda shoenfeld explain in his last book ' vaccines and autoimmunity" relation ship between squalen AS03 and narcolepsy and my disease "shoenfeld syndrom or gulf war syndrom induce by squalen exposure in vaccines A)

 

[morse27]

i received monday my 6 infusion of rituxan, and iknow after 11 month improvment on some symptoms but not all , my severe intestinal disorder knexfor be very strong than ME people was dispaerared for 2,5 month !! its sure for this illness , treatment need to be longer that for ME people , .because GWI is a lipidic cells C30H50 (brain, intestinal,heart, lung, skin ....) create after just some weeks many dysfunction in grow hormones, hypogonadism, insuline resistance , no deep sleep N3 and N4 (its a torture )
its explain why 35 veterans of the first gulf war had not choice than suicide to escape at this torture since many years (25 years)
i'm lucky t have this treatment with this disease, i'm alone in the world to test rituxan for gulf war illness disease ;

the problem is that laboratory can use this squalene in all vaccines in the world , the number of victims with this disease will incruise regulary , i can say just this disease is very very more hard than ME/CFS imagine !! whats the level of tiredness and other pain .....i think american government is waiting that all vet sufferers will be die to stop research , i think less 5 years.........

 

[marpet]

If Ocrelizumab is working like Rituximab, just potentially better, then why don't the pharma companies test it in ME? There are millions of potential patients around the world, which means billions of $$$.

 

[Justin30]

Ocrelizumab from whar I read was quite dangerous in people with MS.

Lots of death during the trial. I cant remwmber where i saw the article.

 

[Marky90]

Ocrelizumab from whar I read was quite dangerous in people with MS.

Lots of death during the trial. I cant remwmber where i saw the article.

From what I have read the risk of death was not very high compared to the number of participants. And the deaths are weird, e.g. 3-4 heart failures in the RA trials. Might just be someone dying from heart failure, not neccesarily the drug..

 

[Justin30]

I just did a quick search cant find it.

Heres a question. I know this whole me rutuximab/ME thing is quite vague in terms of symptom improvement. But do you think having lots of pain will predict the outcome in ME patients? RA there is lots of pain where some me patients have a lot of pain and some have barely any.

 

[morse27]

RITUXIMAB, or Ocrelizumab and others bio therapie are serious risk for health and it will be necessary to check the balance benefice/risk for all diseases before i have took 6 doses courses of rituxan and i feel very worse.
in france , rituximab is not given for RA in raison of many side effects for many patients.: steven johnson synd, death, LEMP......HAS is not agree to give this therapy with facility, i"m sure ME patients cant allowed to receive this drug for this reason and for a few level lower than 10% cured in the world

 

[Marky90]

I just did a quick search cant find it.

Heres a question. I know this whole me rutuximab/ME thing is quite vague in terms of symptom improvement. But do you think having lots of pain will predict the outcome in ME patients? RA there is lots of pain where some me patients have a lot of pain and some have barely any.

No we dont know anything about that..

 

[Marky90]

RITUXIMAB, or Ocrelizumab and others bio therapie are serious risk for health and it will be necessary to check the balance benefice/risk for all diseases before i have took 6 doses courses of rituxan and i feel very worse.
in france , rituximab is not given for RA in raison of many side effects for many patients.: steven johnson synd, death, LEMP......HAS is not agree to give this therapy with facility, i"m sure ME patients cant allowed to receive this drug for this reason and for a few level lower than 10% cured in the world

Stevens-Jonhson syndrome and death are not something to be concerned about, risk way to mathemathical.

 

[morse27]

@Marky90 , you have just to waiting 2018 , when all clinical trials on ME with RITUXIMAB will be publish (norway and US)

and you' ll see , all i said is right

i have 6 doses of rituxan in my vein since 2014 december with serious side effects , and i know results of many "human guinea pig "

do you know many testimony of patients under rituxan therapy in good health for a long time ??

i know just history of maria gjerpe in norway (lucky woman)

this improvment is known in a few group of ME lower 10 % of all rituxan tester
All fall sick again after some months !
Rituximab improve many ME people (65%) just a short time ,
but its impossibe to take this drug every 4 months for life !!

 

[Justin30]

I understand this too be true rituximab will not solve the me/cfs conondrum. I have been made aware of that the drug is very strong and many me/cfsers this could be a problem. We will see the results in 2018 correct but i personally feel that it will take a cocktail of drugs to solve the problem.

This is a neuro, immune, endocrine, musculoskeletal disorder that damages brain tissue and cause damage to and malfunctioning to many parts of the body.

The bottom line is that everyone with me/cfs and there supporters need to come together, donate, speak out, lobby and fight for more fubding.

The bottom line is that with more money comes more solutions what could also help is musseling a few of the phycs and psychatrists in high positions that think this is all in our heads.

 

[Justin30]

*FUNDING

Lesss chat on forums and maybe and absolute assault through social media, news, newspaper artcles,
Emails, blogs, announcements. I dont know what to say so many smart people talking about cfs but we are mostly not Drs and we need the help of Drs and money so how about run a muck through outlets we can reach.

Sorry this forum is awesome just know that we the people need to make a stronger stand even if its from our beds if we want to see change.

 

[Marky90]

@Marky90 , you have just to waiting 2018 , when all clinical trials on ME with RITUXIMAB will be publish (norway and US)

and you' ll see , all i said is right

i have 6 doses of rituxan in my vein since 2014 december with serious side effects , and i know results of many "human guinea pig "

do you know many testimony of patients under rituxan therapy in good health for a long time ??

i know just history of maria gjerpe in norway (lucky woman)

this improvment is known in a few group of ME lower 10 % of all rituxan tester
All fall sick again after some months !
Rituximab improve many ME people (65%) just a short time ,
but its impossibe to take this drug every 4 months for life !!

What serious side effects are you referring to? There are many more than Maria Gjerpe in complete remission.
Rtx is a potent drug, no doubt, but lasting worsenings are incredibly rare. I don`t follow your profound scepticism.

 

[Marky90]

I understand this too be true rituximab will not solve the me/cfs conondrum. I have been made aware of that the drug is very strong and many me/cfsers this could be a problem. We will see the results in 2018 correct but i personally feel that it will take a cocktail of drugs to solve the problem.

This is a neuro, immune, endocrine, musculoskeletal disorder that damages brain tissue and cause damage to and malfunctioning to many parts of the body.

The bottom line is that everyone with me/cfs and there supporters need to come together, donate, speak out, lobby and fight for more fubding.

The bottom line is that with more money comes more solutions what could also help is musseling a few of the phycs and psychatrists in high positions that think this is all in our heads.

Tbh we dont know what kind of disorder ME is, even though we can see abnormalities in mentioned systems.
I agree with you that a drug cocktail is the likely future treatment, but we need to get individual drugs through trials first. At least a couple.

 

[Justin30]

I agree with you on that we need at least one drug and a powerful one to be taken seriously. Rituximab os good and will put us on the map as a serious disease.

Further we need the biomarker for subsets.

Top drs that use ivig or scig right at the begging of onset see results look at dr peterson, dr teitalnbalm, dr oaklander, dr tae park, dr KDM.

Defining true ME from the get go then hammering it with ivig like they do Guillian Barre, CIVP, Myathenia Gravis, vasculitis, PANDAS, Polymylitis, etc. May be the answer for the severely ill subset and potentially anyone that comes down with CFS. By yhe way all the syndromes i mentioned are neurological diseases caused by autoimmune responses of the body.

Sorry for going off topic and for the poor spelling this diseases and large health organizations managing really grid my gears. Im sure ill get over it...maybe not..

 

[Thomas]

@Marky90 you're obviously a big proponent for RTX treatment for ME. Forgive me if you've already mentioned this but have you started treatment with it yet?

 

[Marky90]

@Marky90 you're obviously a big proponent for RTX treatment for ME. Forgive me if you've already mentioned this but have you started treatment with it yet?

I am I have my first infusion in the start of April!

 

[Thomas]

I am I have my first infusion in the start of April!

Excellent. I'm sure you will keep us posted on your progress, which I hope is a major one for you.