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Does anyone know of any cases in the US where Rituximab has led to remission of CFS/ME?

Discussion in 'Rituximab: News and Research' started by silky, Jul 25, 2017.

  1. silky

    silky a gentle soul here to learn

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    Serious question!

    I have searched high and low and never once found a pure ME story where the person took Rituximab in the US and went into remission. I have seen a couple who had other autoimmune conditions, but that's it.

    There's not one on this board, PatientsLikeMe, Healthrising, Reddit, DailyStrength, ProHealth or any American blogs. And there are plenty who tried it. The best cases I've seen are people who got slightly better for a very short period of time which is no different than say Valcyte.

    And don't say the good responders are out living their lives! People who do well on LDN for example sing from the mountains about it, so why wouldn't the same be true for Rituximab?

    I know OMI says 2 out of 3 of their patients respond. But honestly has anyone ever met these people?

    Perhaps the Norwegian patients are truly special :(
     
  2. Hip

    Hip Senior Member

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    Ah yes, the great rituximab mystery: the drug apparently completely cures around ⅓ of ME/CFS patients according to the Kolibri private hospital in Norway (see this post), and according to the OMI (see this post), and according to Fluge and Mella's published 2015 phase II study (which found 11 out of the 29 patient treated were still in full remission 3 years later).

    Yet when you look online for any accounts from ME/CFS patients who were cured by rituximab, you find next to nothing. Go figure. We do have one pretty good success story on this forum, that of Rebecca's (one of her many threads here), but that's about it.

    You are more likely to encounter a unicorn, rather than these fabled creatures, the cured rituximab patients.
     
    Last edited: Jul 25, 2017
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  3. Sushi

    Sushi Senior Member Albuquerque

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    Last we heard @Rebecca2z had a lot of improvement. She has not posted for a while but wrote this a few months ago:
    It really brought her up from an extremely dangerous and fragile state to being able to hike etc.
     
  4. silky

    silky a gentle soul here to learn

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    Thanks @Hip and @Sushi

    I too saw Rebecca's story, and was very encouraged by her success. But if you read her story in depth, it seems she had many other co-morbid autoimmune issues the Rituximab could've been addressing
     
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  5. silky

    silky a gentle soul here to learn

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    Let's do the math here

    I've read about 25 Rituximab stories, 1 (Rebecca) which I'd call a remission, the other (@funkyqueen) which seemed to be a partial remission. The other 18 either had very brief benefit, no response, or, in the case of 3, got much worse.

    If the Norwegian / OMI numbers hold up, for those 23 non responders I found, there should be 46 others out there who got clinically better, of which 23 are in remission.

    Where are you guys??? Come talk to us!
     
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  6. Hip

    Hip Senior Member

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    Indeed, it was not a clearcut case of rituximab treating a pure ME/CFS patient.
     
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  7. Alvin2

    Alvin2 If humans were rational...

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    After seeing several of your threads i get the impression your at a different stage then many of us, have you been newly diagnosed with ME/CFS?
     
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  8. Hip

    Hip Senior Member

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    Exactly, the numbers just don't make sense.
     
  9. silky

    silky a gentle soul here to learn

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    Hi Alvin! Yes I am, been sick under one year. Why do you ask?
     
  10. silky

    silky a gentle soul here to learn

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    Right so strange. If we assume the Norwegians are special then what's going on with OMI? I mean in Norway we have bonified recovery as seen with the girl who plays chess, the woman in the canoe, the dad who can work on his house, and the woman who became a champion for Phase 3 trials. You would think OMI would highlight someone

    I just don't get it. By all accounts the OMI doctors are top notch. I've never heard an ill word spoken of any of them. And they say 2/3 respond, why would they make that up? And why would they keep giving their patients an expensive, potentially dangerous drug if there were no responses? I would be inclined to say marketing, but they seem so altruistic that notion is ridiculous. I really can't wrap my head around it at all :(
     
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  11. Hip

    Hip Senior Member

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    I was not even aware of those Norwegian success stories. Would you have any links handy to them? Did you search for them in the Norwegian language?
     
  12. silky

    silky a gentle soul here to learn

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    Sorry Hip I don't have links handy. Here's what I remember

    The dad is from the Phase 1 pilot

    The woman in the canoe is from a Norwegian YouTube video (at the end)

    The chess girl is from a Norwegian article

    And um hmm the Phase 3 champion I saw in a Phoenix Rising blog post
     
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  13. IreneF

    IreneF Senior Member

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    There's a difference between "response" and making life better. A response can be minor.
     
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  14. silky

    silky a gentle soul here to learn

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    Fair point Irene, I agree.

    Let's say that some of the US patients had a response that wasn't life changing (like 1/3 in the Norwegian trials). That still leaves another 1/3 who should be back in society (at least 23 patients)
     
  15. dreampop

    dreampop Senior Member

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    I would also like some clarification - Are Fluge and Mella recycling the responders into each new study? A video I saw recently from one of them seemed to imply yes, but I can't find it -I think it was from Iime.

    When I went to OMI to try to get Rituximab, I was told the rate of response wasn't great, they were only using it on the most severe and responses weren't full remission. Maybe things have changed since then, or moderate ME/CFS responds better.

    I also don't buy into someone with long term moderate or severe M.E. not coming onto one of the online forums to rave about it. At least a few would - I know I would and suspect everyone who reads this would. Ironically, the Norwegian responders do go online or youtube, or are in documentaries, as @silky mention.

    There was a post on prohealth about a woman whose son went from severe to moderate with Rituximab, which hasn't been mentioned so far, but I believe he still couldn't work/exercise.

    2 thoughts about this

    1) Is it the same protocol - dosage/time/etc.. Only someone who has been on Ritux at OMF can answer this question.

    2) Is there a higher prevalence of a CFS like autoimmune disease that is undiscovered in Scandinavia?

    Number 2 sounds nice, but Fluge & Mella are extraordinarily competent, and they have been looking for autoimmune signatures in the blood, as well as in donor tissue from muscle and CNS. If there was a major autoimmune disease throwing off their findings, I think they would have found something. My gut tells me they are looking at pure M.E./CFS.

    So were left with Number 1, or it really is the "great rituximab mystery", a Charles Dickens novel.
     
    Last edited: Jul 26, 2017
  16. Valentijn

    Valentijn WE ARE KINA

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    I suspect the number of ME patients being treated outside of trials is extremely low, even in the US. It's a very, very expensive treatment, and there's no way that insurers are covering it for ME yet.
     
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  17. dreampop

    dreampop Senior Member

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    On one of the threads @Hip linked, a user said "American patients didn't receive 4 infusions of RTX for at least 6 months." which suggests the protocol wasn't the same, and later the same user implies when OMI started using a more similar protocol, the response rate improved.
     
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  18. Sidereal

    Sidereal Senior Member

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    I tend to think that the published Norwegian studies have accidentally (due to small samples, sample overlap and neurology referrals) studied an as-yet-undiscovered autoimmune disease (perhaps people with an autoimmune dysautonomia with those adrenergic and cholinergic antibodies) and that the reason we never hear of this drug helping any ME/CFS patients in America is because it either doesn't or they're not using the same treatment protocol. It strains credulity that, if response rate really were in line with Norwegian studies (as OMI claims), we wouldn't have people posting remission stories online. We get a thread around here for every trivial benefit from some supplement or other.
     
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  19. Gingergrrl

    Gingergrrl Senior Member

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    My doctor who was from OMI but now in his own private practice (OMF is actually the research piece vs. the institute) feels that the potential responders are the ones with autoantibodies who have had good responses to IVIG.

    I can tell you with 100% honesty that since posting my thread about Rituximab, I have been contacted by multiple people who did Rituximab either through OMI or Kolibri and several had good responses. I was also contacted by one OMI patient over a year ago who had a good response but she did not want to share it on the public board for personal reasons. Since I do not have permission to share any of their names or details, I have to honor that but this is several people and they really do exist.

    My protocol was the autoimmune protocol which is 375 mg Ritux/BSA (body surface area) which for me equals 600 mg per dose vs. in the Fluge and Mella study it is one gram per dose regardless of the BSA formula. My doctor feels that total B-cell depletion is the goal and such a high dose is not needed in many patients (which also decreases the risk of allergic reactions and other side effects).

    My doctor got it covered by my insurance so all I will have to pay is the co-pay. I have to be honest, I find it a little insulting to imply they are doing this for the marketing. Ritux was not even considered for me for over three years of being an OMI patient until I had a life-changing response to high dose IVIG first. No one pushed this decision on me and we discussed it for over a year of IVIG until we reached the decision that I had a good chance of being a responder. I did all possible safety tests (for Hepatitis, TB, JC Virus, etc) and coordinated the infusion with my MCAS doctor so it was done locally and as safely as possible. My MCAS doctor is actually the one prescribing it so I can do it at his infusion center without having to travel up to OMI. I am documenting the entire thing in another thread and even if it does not provide remission, or any benefits beyond IVIG, I have zero regrets that I tried it.

    Once more patients get the opportunity to try it, there will be more public reports on boards like PR. I was contacted by an OMI patient on FB in my calcium auto-antibody group who believe it or not, had never even heard of PR or that it existed. So, not everyone uses the internet as much as we do especially if they are too ill to post.
     
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  20. Eirran

    Eirran

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    I will just point out that "the girl who plays chess" was treated at OMI not as a part of the Fluge/Mella trial.

    You also have Maria Gjerpe who started the crowdfunding MEandYou for the Fluge/Mella Phase 2 study (Not Phase 3 as you state, Phase 3 is not published until 2018). Maria was testing the procedures for the Phase2 study and went from being bedridden to working 80 % in just over half a year. (Sorry link only in Norwegian, use Google Translate :)
    https://www.aftenposten.no/norge/Fo...a-a-lage-middag-til-datteren-min-585333b.html )

    I also know of some other Norwegians that were treated at OMI. They did not recover completely but are now far better than they were before the treatment.
     
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