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Question re: how Rituxan compares to other immunosuppressants?

Discussion in 'Rituximab: News and Research' started by Gingergrrl, Mar 4, 2016.

  1. Gingergrrl

    Gingergrrl Senior Member

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    I was wondering if anyone could explain how Rituxan compares to other immunosuppressant meds such as Imuran, CellCept, etc, and if anyone on PR has ever taken a hardcore immunosuppressant like those?

    Do they work under similar mechanisms, similar side effect profiles, similar risks of anaphylaxis, etc?

    @deleder2k @Rebecca2z @Jonathan Edwards @Butydoc @funkyqueen (and anyone else who is familiar with these meds!)

    Thank you in advance!
     
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  2. *GG*

    *GG* Senior Member

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    How does it compare to Copaxone?

    GG
     
  3. Gingergrrl

    Gingergrrl Senior Member

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    No idea, what is that one?
     
  4. *GG*

    *GG* Senior Member

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    Used for MS, ends with an *one, wonder if it is related to Naltrexone?

    GG
     
  5. Gingergrrl

    Gingergrrl Senior Member

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    As far as I can tell, it has nothing to do with RTX or the other immunosuppressants that I mentioned and I think we are talking about two different things!
     
  6. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Dear Gingergrrl,
    'Immunosuppressant' is a pretty outdated term now that we have drugs that do specific things to specific compartments of the immune system. The problem with Imuran (azathioprine) is that it causes skin cancer and also nobody really knew what it did other than poison white cells generally. It was very useful when transplantation started out and it may still be used as part of a cocktail for life threatening conditions but I have not used it for many years. CellCept (mycophenylate) has a more specific action on lymphocytes and is probably safer all round but it is not routinely used in most of the autoimmune diseases. I think on its own it is too blunt an instrument.

    Side effects for these drugs are all pretty much unrelated. The drug chemistry is unrelated. Allergic reactions used to be common with azathioprine and can occur with almost any drug. For rituximab by slow infusion you can pretty much avoid allergic reactions by careful administration. It has the great advantage that as soon as there is any sign of a problem you can stop giving it - which you cannot for a drug given as a pill.

    At the moment we have circumstantial evidence from Norway that methotrexate and rituximab may both help some PWME but in neither case is that definite. Prior to their studies there was not much reason to think any sort of reduction in immune cell function would be relevant to ME/CFS. I would not recommend taking immunosuppressants of any other sort because we simply have no god justification for it.
     
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  7. Gingergrrl

    Gingergrrl Senior Member

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    @Jonathan Edwards Thank you and I did not know that. Would "immunomodulating therapy" be a better term?

    Wow, thank you and that is good to know.

    Thank you and also good to know.

    I figured as much.

    Good to know.

    Agree you can stop the infusion whereas it would be too late with the pill but have heard the risk of anaphylaxis to RTX is pretty high.

    Am going to share with you why I am specifically asking and it actually is not b/c of ME/CFS or the studies. I just learned from some tests that my new doctor ordered from the Mayo Clinic that I am positive for n-type calcium channel antibodies. The cut off is > than 0.03 and I am 0.05 so it is a low positive but on all of the other tests in this group I am a 0.00 which means I do not have the antibody at all. The entire test was called "PAVAL."

    My understanding is that this antibody attacks the calcium channels but the bigger risk is that it can correlate highly with small cell lung cancer and my absolute worst symptom and why I cannot walk without wheelchair is dyspnea or shortness of breath. My lung cat scan was completely clear but I have failed virtually every other lung test known to man.

    My doc recommended immunosuppressant or immunomodulating therapy (and mentioned those two meds as possibilities) but that was before my test results were even back. I have no idea what meds he is actually going to recommend and he is waiting for me to do a pulmonary consult first.

    Does hearing all of this background change anything or would your answer still be the same? I am on the autoimmune side overall with Hashimoto's, MCAS, and no cold/flu or fever of any kind in over three years.

    Thank you for taking the time to answer and I appreciate it.
     
  8. Thinktank

    Thinktank Senior Member

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    @Jonathan Edwards , Would belimumab work? It reduces B-cells by inhibiting BLyS, instead of destroying B-cells like rituximab does.
     
  9. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I think immunomodulatory therapy is similarly a bit dated. I am afraid to say that in the past my experience has been that physicians use these vague terms if they do not really know the immunology.

    The risk of anaphylaxis with rituximab is tiny. Our unit has given well over a thousand treatments and we have had no cases. Cases occurred early on, particularly in southern American countries presumably because of incautious infusion practice. There are vested interests in discouraging the use of rituximab (rheumatologists do not get many fees for annual treatments!) so maybe that is why stories have been put about.

    I do not know much about calcium channel antibodies. A lot of these tests are pretty hard to interpret. I cannot comment on your own case. Your illness my be one off. I would also just add that the real problem with rituximab I have seen is a sterile pneumonitis or adult respiratory distress syndrome. For patients with existing lung problems I was always very cautious about using rituximab.
     
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  10. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Belimumab produces a much more partial B cell reduction and it does not work well in RA. It might be relevant for ME/CFS.
     
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  11. deleder2k

    deleder2k Senior Member

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    @Gingergrrl, was cyclophosphamide (Cytoxan) mentioned by your doctor? There is an ongoing study at Haukeland University Hospital. To my knowledge the result looks encouraging. Dr. Fluge said in a presentation that if their theory were right, cyclophosphamide was likely to be the drug of choice instead of Rituximab, due to its rapid onset and its low cost. It is still premature to recommend treatment or conclude in any manner, but it is indeed very interesting.

    Rituximab in combination with Cellcept (Mycophenolate) could be an interesting combination. But nobody knows.

    Obinutuzumab has just been approved. It is said to be even more effective in killing B-cells compared to Rituximab. It also targets CD20 - like Rituximab. To my knowledge no one has tried it against ME.

    If I were you and had ME I would try Rituximab if your doctor recommended it. If Cytoxan is on the table I would consider it too, but I guess it is more risky since we don't know a lot about possible adverse effects.

    Disclaimer: I am just a lousy economist, so don't listen to what I say
     
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  12. rebar

    rebar Senior Member

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    Deleder, just googled cyclophosphamide, seems to have some safety issues, how is Fluge dealing
    with safety concerns. Jonathan what's your opinion of cyclophosphamide.
     
  13. funkyqueen

    funkyqueen Senior Member

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    Hi @Gingergrrl & all !

    I can not answered your question because i " never" had other immunosuppressive's drug others than Ritux...
    BUT...
    I tried corticosteroids (prednisolone) before Rtx's protocole, and, as i " answered" to it ( i mean that corticosteroids improved me "a lot" but... for only few minutes/hours ... :(
    So , for that reason, as corticosteroids have an immunosuppressive function, i guessed " maybe , i will answer to Rtx " ?
    ...And i was right


    Edit : i missed it : i tried Plaquenil, during 14/15 day, but impossible to continue : it gave me some horribles headeaches, every day..
     
    Last edited: Mar 5, 2016
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  14. funkyqueen

    funkyqueen Senior Member

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    Lord ... :( I am so disgusted (and at the same time, as I'm no more a child, not at all surprised) to see that everything is about money ...


    Did you know that Genentech, only for the year 2008 (or 2009, not sure about the year), just for Rituximab, just in USA, and just only for one indication, has made more than 8 billiards profits ??

    Did you know that in Europe, the lab developer of Rituximab has lost its rights / patent expired since a few years?
    And it is for that (a lot) that European's country use less Mab Thera (Rituximab's trade name in Europe)?
    In France, Rtx has the AMM (authorization/labelized) for three major diseases, but still come to remove one? (Goujerot -Sjogren)? ...
    Do you know that one gram of Ritux cost € 3,000 in Europe, almost the double in the US, and .... € 350 per gram in India ??? !!! ............. Just sayin..........


    And now, under the pretext that drugs like Cyclo is cheaper, do we will consider us as lucky to qualify for Cyclo in several years, eh, not before ??
    While it is far more dangerous than Rituximab ?!......
    It is shameful.
    Yes, I suppose we should consider us as happy and lucky, if we can have a drug, and we will kneel down and say thank you and amen ...
    Anyway, these patent considerations, those billions of dollars, even if we are aware of this sad reality, we will not change the world ... so ... lets feel happy, uh ? .... :meh:
     
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  15. deleder2k

    deleder2k Senior Member

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  16. Gingergrrl

    Gingergrrl Senior Member

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    Thank you all for the additional feedback which I will read later tonight and respond to, it is much appreciated.
     
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  17. Freddy

    Freddy

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    Hi @deleder2k ,
    do you know, how does cyclophosphamide perform compared to rtx? More specifically: does it help patients who are non-responders to rtx?
     
  18. Gingergrrl

    Gingergrrl Senior Member

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    I feel weird quoting myself but wanted to apologize that I could not get back to this thread today that I started b/c have been preparing all my medical info for an upcoming pulmonary appt. But definitely plan to read and respond as soon as I can.

    It sounds like no one PR has taken any immunosuppressants (other than Rituxan) but that the consensus is that they are bad news, especially the old school ones. I have no idea yet what will be proposed for me b/c many aspects of my medical issues still remain unclear but I am hoping to gain clarity by the end of March as new pieces of information keep coming in.
     
  19. Gingergrrl

    Gingergrrl Senior Member

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    Thank you @Jonathan Edwards for the additional response and apologize for my slow reply. I know that immuno-modulatory therapy is a vague term but it is the term used by the neurologist to describe what they are proposing (but I still do not have any specifics until after an upcoming phone consult and appt in 2 wks.)

    I truly fear that the risk of anaphylaxis with RTX for me is higher than the average patient b/c of my MCAS which is sadly acting up again. I'm not reacting to stories that I heard vs. how my body has reacted to much less powerful meds with lower anaphylaxis profiles. Have you administered RTX to anyone with severe MCAS?

    I know you cannot comment on my case but had wondered in general if you were familiar with the antibody panel done at the Mayo Clinic called "PAVAL" which screens for many things and in my case I was positive for the N-type calcium channel antibodies. Was curious if you have encountered these antibodies in any other patients and how they correlated to paraneoplastic syndromes in general vs. other explanations.

    What types of existing lung problems did the patients have who got pneumonitis or ARDS from RTX? Did they already have a lung infection? I have no infection but have restrictive pulmonary functioning on all PFT's and severe orthostatic dyspnea (and now possible V/Q mismatch from a scan showing lack of perfusion/ventilation to parts of my lungs.) Am also trying to rule out PAH or blood clots in the lungs and trying to leave no stone un-turned.

    Am not asking you to diagnose me, just want your general opinion of the antibody or if you have encountered it before, etc. Thank you in advance!
     
  20. deleder2k

    deleder2k Senior Member

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    Hello, Freddy.

    I know that cyclo has made a patient go into remission, which was a non-responder to rituximab. Rapid response (within days). The other patient I know about got up to a functioning level of 80% (compared to a healthy individual)

    I also know a case where RTX and cyclo (First, RTX, then cyclo a few years after) have been tried without encouraging results.
     
    Last edited: Mar 6, 2016
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