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Cyclophosphamide in ME/CFS Part A:an Open Label Phase-II Study With Six Intravenous Cyclophosphamide

Discussion in 'Rituximab: News and Research' started by deleder2k, May 27, 2015.

  1. melihtas

    melihtas Senior Member

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    In the patent application paper they stated that most of the patients already received all six infusions at the time of writing but off course figures may change. I wanted to try cyclo because I was under the impression that cyclo is more effective than rituximab and it is the only affordable option for me. I was waiting for IACFSME to see some statistics since the publication of the trial has been postponed.
     
  2. Gingergrrl

    Gingergrrl Senior Member

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    I was curious, when you said that cyclo is more effective than RTX, do you mean for traditional ME/CFS symptoms or for reducing auto-antibodies (in someone with known antibodies)?
     
  3. Sidereal

    Sidereal Senior Member

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    These drugs are being trialled in traditionally defined ME/CFS (diagnosis by symptom checklists, no lab tests).

    However as far as I know CTX is also used in severe autoimmune diseases like lupus which must mean it depletes the antibodies or does something else to reduce the immune attack on self.
     
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  4. melihtas

    melihtas Senior Member

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    When they published the results of the cyclo pilot study with 3 patients they said some patients didn't respond to rituximab responded to cyclo and average response time is shorter than rituximab. That is why I got the impression that cyclo was more effective for treating ME/CFS symptoms.
     
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  5. Gingergrrl

    Gingergrrl Senior Member

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    Is CTX another name for Cyclo? I assume that it what you meant and if they are using it in Lupus patients, is Cyclo/CTX reducing the lupus antibodies or is this info not yet known?

    Do you mean that the entire cyclo study only had three patients in it or just three responders of a bigger group? I apologize that I have not been able to read this entire thread yet.
     
  6. melihtas

    melihtas Senior Member

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    Before the current study with 40 patients they did a small pilot study with 3 patients.
     
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  7. Sidereal

    Sidereal Senior Member

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    Yes I just meant that I don't know what it does specifically in lupus, I'm not saying that the info isn't known.
     
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  8. deleder2k

    deleder2k Senior Member

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    Yup, that is correct, but my understanding is that quite a few patients responded a while after their last infusion, but I can't confirm this 100% as of now.
     
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  9. BurnA

    BurnA Senior Member

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    From reading the document it describes only two patients in detail from the latest study and also the 3 pilot patients.

    So the 35% may not be fully representative.

    But there is definitely a large unknown associated with CTX.

    While it may hopefully present a treatment option, for me I am hoping it can lead to more understanding of the disease.
    If they can figure out the difference between the patients who don't respond to RTX and those who respond to CTX and also the non responders i imagine it will lead to a greater understanding of the disease and of RTX treatment too.

    The only problem might be that CTX is so destructive it might be difficult to decipher exactly how it works in ME.

    But it's another avenue to investigate and seeing as we dont have many, its very significant.
     
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  10. Jesse2233

    Jesse2233 Senior Member

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    This is a noteworthy result from the pilot study
     
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  11. MEMum

    MEMum Senior Member

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    Prof Mella said at IiME that the study will end in July 2017, so hopefully we will hear before the end of the year. Some people are in remission. They will be continuing with Cyclophosphamide, in different doses/cycles and also probably other immune modulating drugs. He said that it would be surprising if the first or second drug trialled by them ends up being the best one for treating ME....
     
  12. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Cyclo probably needs to be taken with something else for best effect, I would think. Seems to be the case for most diseases where cause is not pretty well illuminated.
     
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  13. Gingergrrl

    Gingergrrl Senior Member

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    Are there any studies where someone did Cyclo and IVIG together? Sorry if this is already posted and I missed it! I'll be doing Ritux and IVIG together and followed closely (but am not part of any official study).
     
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  14. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Nope.. :) That sounds pretty promising.
     
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  15. Frenchguy

    Frenchguy

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    Anyone have news ?
     
  16. deleder2k

    deleder2k Senior Member

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    We only know that someone has gotten better. Some got worse. Worse than one would expect for individuals with cancer. They've started phase B of the study, but I think only 3 patients have been treated.

    To my understanding part A will be published after the RTX study. I could be wrong, but that is my understanding.

    We will have to wait and see :)
     
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  17. Frenchguy

    Frenchguy

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    Thks Deleder, if they have started partB, in my understanding, 40% of ppl in part A have a great response ?
     
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