Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
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Has anyone visiting OMI (Kogelnik, Kaufman) and taking Rituximab had any significant recovery??

Discussion in 'Rituximab: News and Research' started by leokitten, May 2, 2015.

  1. leokitten

    leokitten Senior Member

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    Wanted to put out this question because I cannot find anyone who's gone to OMI, received Rituximab and come out with any significant recovery or long lasting improvement, only threads showing the treatment failed after spending so much money. Definitely not appearing to be 67% that Fluge/Mella are reporting. Maybe just my queries on google and PR aren't finding anything.

    Is it worth spending $40k? A drug having a 67% significant response rate is about as good as you are going to get in medicine, most drugs only work in approx 30% of people.
     
    Last edited: May 2, 2015
  2. IreneF

    IreneF Senior Member

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    I got a short remission from Ritux. Not worth $40k. I'm getting better results from Montoya's Valcyte and anti-inflammatory combo, but it's taken about a year.

    Not that I regret the Ritux treatment, or feel that OMI led me on or was deceptive in any way.
     
    Last edited: May 2, 2015
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  3. nandixon

    nandixon Senior Member

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    @IreneF, thank you. I'm sorry it didn't work for you.

    At the OMI, they usually test their ME/CFS patients for natural killer cell function and vasopressin, and these are both typically found to be low. Do you know what your values were?

    Given how expensive it is, it'd be nice to have some kind of marker to determine for whom rituximab might work ahead of time.
     
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  4. Gingergrrl

    Gingergrrl Senior Member

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    @nandixon I am a patient at OMI and my NK functioning very low (originally 5 and now 6) and vasopressin was so low it was undetectable on two tests.

    Are these two things the markers that tell if someone might be a candidate for Rituxan? My dr has not recommended it for me but I am just curious.
     
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  5. IreneF

    IreneF Senior Member

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    I think my NKC function was 11. I don't recall any vasopressin test.
     
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  6. nandixon

    nandixon Senior Member

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    Not that I know of, but I was hoping that they might be (or at least increase the chances for success). That's why I was asking Irene, just to see if there's a pattern as to who does or doesn't respond. Presumably the OMI doctors would be looking for clues like this.

    (Btw, my NK cell function was 10, and my vasopressin also undetectable.)
     
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  7. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    $40k sounds a lot. The drug cost of two 1gm infusions is $6k so a package for a single course, which is all you need to see if you respond, might reasonably be $10-12k I guess. I think patients can reasonably expect a clinic to give success rates to date for a treatment like this. The research community also needs to know what success rates are. I don't think I would want to spend $40k without that information from the clinic.
     
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  8. leokitten

    leokitten Senior Member

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    Sorry let me try to explain how I was thinking... I came up with the approx total of $40k using the latest info about OMI costs (see above) from PR and thinking you would probably need 4 total infusions to see if things are working using Fluge/Mella timing, 1gm start, 1gm week 2, 500mg month 3, 500mg month 6. I believe the $6800 is for 1gm here in the U.S not for 2gm.

    You are right $40k is probably a bit high but not far off, remember there are a lot of costs beyond just the drug itself.

    I would be glad to hear from people who went through it to tell us exactly how much it cost for them at OMI.
     
  9. leokitten

    leokitten Senior Member

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    Thank you for the response. Could you tell us exactly how much Rituximab you were infused and on what schedule? Also how long was your remission and when during the treatment did it start?
     
    Last edited: May 3, 2015
  10. leokitten

    leokitten Senior Member

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    What is Montoya's anti-inflammatory combo?
     
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  11. Sidereal

    Sidereal Senior Member

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    I am surprised they haven't published a retrospective chart review of all ME/CFS patients they've treated with rituximab at this clinic. I suspect this hasn't happened because the outcomes with this treatment are abysmal in the real world outside of the Norwegian trials and no one would be prepared to hand over $40k once they saw the numbers.
     
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  12. Gingergrrl

    Gingergrrl Senior Member

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    I am not defending them and have zero knowledge on this topic but my sense is that very few patients have tried Rituxan with them b/c if they do not live locally, it would be hard to get there for all the infusions plus the cost. I do not think they have enough data to publish yet (but I could be wrong.)

    Also, if you have US insurance and use OMI's lab or any Quest Lab, I have only paid $20 per blood draw (even when gave 20 vials of blood and thousands for blood work). I know this is not the case if coming from outside the US.

    The cost of the office visits and phone calls are very reasonable IMO (Dr. Cheney who I have never seen is $1200 per office visit!!!). I cannot comment on price of Rituxan as never discussed this with my doctor.

    I think they are offering it to people that they feel are good candidates and they fully explain the risks and informed consent. They are not pushing it on everyone as it has never been mentioned for me.
     
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  13. SOC

    SOC

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    I doubt OMI, of all places, is giving Ritux to patients just to make money. The OMI doctors are among the most generous and helpful doctors in the business. They certainly aren't overcharging their patients in general, so I can't imagine why anyone would suggest that they would be giving a treatment like Ritux just because it makes them money. From what I've heard, all patients offered Ritux are told very clearly the treatment costs and that there's no guarantee it will work. They're not leading anyone down the garden path.

    My guess is that OMI doesn't have a sufficiently large patient group on Ritux, or long enough history with it to make up a decent retrospective study yet. They're still exploring, too. We are not going to know who Ritux works for and who it doesn't until a significant number of patients have taken it. We need that data.

    Is OMI only giving Ritux as part of a research study or are they giving it to anyone they think it will help outside of any official study?
     
  14. deleder2k

    deleder2k Senior Member

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    Kogelnik says that they are looking at the same response rates as the researchers in Norway, i.e 2/3 has an effect from RTX.
     
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  15. leokitten

    leokitten Senior Member

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    From the posts I've read here on PR of patients going to OMI they offer Ritux to anyone who they think might benefit.
     
    Last edited: May 3, 2015
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  16. leokitten

    leokitten Senior Member

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    I read this as well but the reason I started this thread is because no where on PR or anywhere else I searched could I find one single person who went to OMI and got Ritux and had a significant recovery or remission. Everyone failed or only had a short response.

    It could be that most of these people don't know of or aren't active on any ME forums like PR, but it just seemed weird to me because 67% is an impressive efficacy rate and I would've expected to see more.

    @deleder2k I enjoy reading your posts and information from Norway, I imagine no one from the 152 trial patients would likely post their experience on PR due to the language barrier, but I wonder will they use some forum or resource in Norway?

    It was very informative to read posts from patients that were part of the Montoya Valcyte clinical trial.
     
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  17. Sidereal

    Sidereal Senior Member

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    I didn't say they were bilking patients out of their money. Thank god for places like the OMI where people can access off-label treatments instead of being told to go home to their beds and die like we're told in Europe. I was just pointing out that they are charging $40k for a treatment whose efficacy has not been adequately established in ME/CFS and they have not published their outcomes despite having treated an unknown number of patients with RTX. Even a small case series would be useful so people can have some peer-reviewed information before parting with 40 grand.
     
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  18. Gingergrrl

    Gingergrrl Senior Member

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    I do not believe it is a research study and it is offered to anyone that they feel is a good candidate (who is then informed of all the potential risks.) My feeling is that somehow they were able to get access and are willing to try it on a compassionate level to people who are desperately ill and give informed consent. If someone is not a candidate medically, I am certain they would be told no and not given Rituxan. This is just my feeling knowing how they have been with me as a patient for now a full year. They cannot offer a cure to an illness where no cure exists but trying to do everything short of that with the tools they have. (This is directed in general and not at SOC, just to clarify!)
     
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  19. Sushi

    Sushi Senior Member Albuquerque

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    This is from memory, others can correct me, but I remember about 6 PR patients trying ritux. I think @IreneF (who just posted here) had the best response that I remember. Some of these patients are still active on PR, some are not, so we don't know how things went after their ritux treatment.

    Sushi
     
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  20. deleder2k

    deleder2k Senior Member

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    You could try this group which is the official group of the Norwegian ME association:
    https://www.facebook.com/groups/105879142914349/?fref=ts

    Remember that they're publishing their phase 2 open study shortly. The results are better than their previous double-blind study. They used 6 infusions instead of 2 this time.

    This is one patient that was treated at OMI with RTX (in Norwegian, but I guess you can translate it somehow) : http://www.aftenposten.no/100Sport/...-Jeg-har-vart-veldig_-veldig-syk-491763_1.snd

    She also got GG in Norway.
     
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