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What Rituximab dosing schedule does OMI use?

Discussion in 'Rituximab: News and Research' started by greeneagledown, Aug 6, 2015.

  1. greeneagledown

    greeneagledown Senior Member

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    Hi, everybody. Does anyone know what dosing schedule the Open Medicine Institute clinic is using for patients they give Rituximab? I know there was a thread recently on Rituximab at OMI, but it doesn't seem like anyone was able to confirm the schedule OMI is using. Are they using:

    - The Norwegians' original schedule (two 1,000 mg infusions, two weeks apart, without any maintenance infusions);
    - The open-label phase 2 schedule (six 1,000 mg infusions over 15 months); or
    - The new phase 3 schedule (two 1,000 mg infusions, then four 500 mg fixed infusions, all over 12 months)?

    (I say 1,000 mg in the interest of brevity; I know it might be slightly lower depending on body surface area.)

    And does anyone know how OMI figures out whether one of their patients is a "good candidate" for Rituximab? Or do they pretty much give it to any ME patient who is willing to pay out-of-pocket and isn't an infection risk?

    I've emailed OMI directly about this, but I have no idea whether to expect a response.

    Finally, does anyone know of any places in the US other than OMI that are using Rituximab to treat ME?

    @deleder2k, I know you're in Norway, but do you have any info here?

    Thanks in advance, everyone.
     
    Last edited: Aug 6, 2015
  2. deleder2k

    deleder2k Senior Member

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    I don't know. What I do know is that they say they charge $6800 per infusion (+ infusion costs). I found it odd that they say that the rate for each infusion is $6800. It could be due to the fact that they give 1g each time.

    But as Jonathan Edwards has said before; no one really knows how much one need. It is a pretty expensive medicine, and I hope that it is possible for patients to choose the new phase 3 schedule with 1g+1g+ maintenance of 500mg.

    I am sure that OMI could clarify about the dosing schedule. I don't know how they select patients that are suitable for Rituximab.
     
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  3. greeneagledown

    greeneagledown Senior Member

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    Thanks. Yeah, I'm hopeful that 500 mg fixed is enough for the maintenance doses. I don't think Fluge & Mella would be using that schedule for their big trial if they had doubts about it. That would save about $14k in drug costs for a full course. I'm just trying to figure out if OMI has adopted this new, cheaper schedule yet.

    In case you haven't guessed, I'm trying to decide whether to try scheduling an appointment at OMI, and that $14k would be a difference maker.
     
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  4. deleder2k

    deleder2k Senior Member

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    But I must say that I find OMI very expensive.

    Looks like this price list is still up to date. I think the cost of Rituximab is somewhat higher in Norway, but I didn't know the price difference was so high. In Norway 1g is $2999. I have to say that the USD has been appreciating greatly against the Norwegian Kroner lately, but that alone shouldn't make up for a price difference of 100%.

    It baffles me that no other clinic on this planet is offering RTX - especially after the new open phase 2 study.
     
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  5. A.B.

    A.B. Senior Member

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    There are historical examples of treatments that were too eagerly embraced and turned out to be very harmful.

    I think it's quite reasonable to adopt a wait and see stance. Even when the results look very promising.
     
  6. greeneagledown

    greeneagledown Senior Member

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    The lab work is covered by most US insurance plans.

    In general, drugs are significantly more expensive in the US for economic reasons. One reason is that in countries with universal single-payer plans, the government uses its market power to negotiate down on price. Single-payer universal government plans have leverage because they're such large customers. Also, in the US, Medicare drives up the cost of everything because it pays for services and drugs pretty much indiscriminately for people 65 and older, whereas in other countries, government healthcare plans tend to have the sort of cost controls that a private insurance plan would have.

    Anyway, yeah, this crap is expensive! I'm saving up, though.
     
  7. greeneagledown

    greeneagledown Senior Member

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    Completely agree. ME specialists in the US offer all sorts of drug treatments that haven't been proven effective in a large, controlled trial. Seems like there's more evidence for Rituximab's efficacy in ME than for any other drug. I don't know why these specialists offer anti-virals and other immunomodulators, but not Rituximab. I guess maybe they think Rituximab has a worse risk profile, and perhaps they're right.

    We're adults. I've seen the Norwegians' research and I also have a pretty good idea of the potential risks involved. So I don't like that most ME specialists are being paternalistic by not even giving patients the option of Rituximab.

    A wait-and-see approach is hard when publication of the phase 3 study is about 3 years away.
     
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  8. greeneagledown

    greeneagledown Senior Member

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    I agree it's reasonable to wait. But I also think it's reasonable to not wait (for reasons I gave above).
     
  9. ghosalb

    ghosalb Senior Member

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    How about a bunch of us willing (or who can't wait 3 years) get together and appeal (w/ OMI) to Genentech for a lower price, because it is still experimental for us.....I understand it has happened for other drugs.
     
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  10. Violeta

    Violeta Senior Member

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    I guess the potential risk of death is scaring them (the medical, community, that is).
     
  11. Michelle

    Michelle Decennial ME/CFS patient

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    I have been thinking the same thing. There is a thread discussing whether we should be making an effort to get a Rituxan trial going here in the US (my answer: YES!). I would like very much to see Genentech do more to make research in this area more accessible to ME/CFS/SEID research and think this could be where a concerted social media campaign could be effective to get some "drugs into bodies" as the old HIV-advocacy saying goes.
     
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  12. greeneagledown

    greeneagledown Senior Member

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    Yeah. Pretty remote death risk, though.
     
  13. greeneagledown

    greeneagledown Senior Member

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    Now that is a very interesting idea. I didn't know that's been done with other drugs that were still in an experimental stage.

    @Jonathan Edwards, do you have any thoughts about that? I'm sure you think we should all wait until the big phase 3 trial is done, but assuming there are some of us who would like to try Rituximab sooner, do you think it might be feasible for someone (a patient, or maybe OMI) to talk to Genentech about dropping the price for people with ME, since insurance won't cover it?
     
  14. greeneagledown

    greeneagledown Senior Member

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    The good news is that you're almost certainly going to know if you're going to have a worthwhile response by the start of month 9 (from the first infusion). So if OMI is doing the open-label phase 2 schedule (2 induction doses, then 1000 mg maintenance doses at 3, 6, 10, and 15 months), you wouldn't get the last two infusions unless you're already responding.
     
  15. Violeta

    Violeta Senior Member

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    Doctors don't like to prescribe meds that have that type of reputation.

    Well, they obviously are prescribing it in other diseases, maybe once the trials are done there will be some sort of safeguard in place so that doctors won't be sued in case of death.

    I don't know, maybe @Jonathan Edwards can enlighten on that.
     
  16. greeneagledown

    greeneagledown Senior Member

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    There are very few drugs that have an absolute 0% chance of killing you. Aspirin has caused deaths.
     
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  17. Violeta

    Violeta Senior Member

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    Why do you think then that they don't want to prescribe it?
     
  18. greeneagledown

    greeneagledown Senior Member

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    Oh, I agree with you that that's probably the reason. I just don't think it's a great one.
     
  19. greeneagledown

    greeneagledown Senior Member

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    Some specialists also still think a chronic infection is the cause of ME (or at least a subset of ME), and those specialists wouldn't want to destroy a patient's B-cells if they think the patient is fighting a chronic infection.
     
  20. Violeta

    Violeta Senior Member

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    Yeah, that would kill them.
     

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