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Anyone here taken imatinib/gleevec?

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by bspg, Feb 12, 2018.

  1. bspg

    bspg Plant Queen

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    My doctor's want me to try it and I'm curious what others experiences have been with it.

    If you have tried it:

    1. Did it help your MCAS?
    2. Did it help your ME (energy levels, PEM or flu-like symptoms) in any way?
    3. Did you experience any problems or side effects from it?
    4. What dose were you on and how did you know it was/wasn't helping you?
     
  2. Gingergrrl

    Gingergrrl Senior Member

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    I think @Ema might have tried it but I might be wrong on this (apologies Ema if I am)!
     
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  3. Ema

    Ema Senior Member

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    1. Did it help your MCAS?
    No change

    2. Did it help your ME (energy levels, PEM or flu-like symptoms) in any way?
    No change

    3. Did you experience any problems or side effects from it?
    No, maybe a little bit of foot cramping, which I hear is typical.

    4. What dose were you on and how did you know it was/wasn't helping you?
    100-200 mg/day. I can't remember now how long I trialed it for, but at least a month, if not more.
     
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  4. bspg

    bspg Plant Queen

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    Thank you @Gingergrrl and thank you @Ema! :)

    @Ema I'm sorry it to hear it didn't work for you. Have you found success with anything else?
     
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  5. Ema

    Ema Senior Member

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    For better or worse, my MCAS was no longer the worst of my problems when I found out about imatinib. I wish I could have tried it, or the Xolair, in 2008-9 when I was reacting to plain air. But I've been (knock wood) stable for many years now, mostly with antihistamines.

    I still do take antihistamines, but just clemastine at night because it makes me sleepy and olopatadine eyedrops because they help me tolerate my contacts. I did the whole protocol though for many years with Zyrtec, cromolyn and quercetin.

    Beta-hydroxybutyrate, an endogenous ketone, is suppressive to the mast cells as well and going back to a ketogenic diet produced the greatest bump in health I've had in a decade. This article reports:

    Fasting can also be helpful as it produces changes to the immune system and microbiome, but you don't have to fast to produce BHB if you eat a ketogenic diet.
     
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  6. Learner1

    Learner1 Forum Support Assistant

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    My ND had me take C8 oil and exogenous ketones to make it easier to get into ketosis.

    @bspg Our ME/CFS doc mentioned Gleevec to me a couple of times, too. He said the first 4 patients he tried it on did very well with it. Why was he recommending it to you, and what did he think it would do for you?
     
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  7. bspg

    bspg Plant Queen

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    Thanks @Learner1. I'm not really sure. He mentioned it briefly during our last appt but didn't say much other than it is an option.

    He and my new PCP actually met in person at a mast cell conference recently. She too mentioned imatinib for me today during our appt but said she doesn't have a lot of experience with it and isn't sure exactly how it works in mast cells. She kept talking about "resetting the nervous system" and it was honestly a weird appt. I kept getting a vibe of disbelief from her and she talked a lot about meditation and having a positive outlook...o_O I was really confused.

    Also, I feel that my MCAS is pretty well controlled right now and I really believe that ME is my core issue, so I'm not sure why my doctors are talking about imatinib for me. I'd love to discuss it with Dr. K but I can't afford an appt with him right now.
     
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  8. Ema

    Ema Senior Member

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    I think imatinib may also work by increasing the clearance of senescent cells...I think maybe these senescent cells may also be capable of inappropriately releasing mediators including mast cells.

    http://www.prohealth.com/library/showarticle.cfm?libid=28865

    Mast cell disease is characterized by high intracellular calcium and imatinib also can normalize this. I am guessing dysregulated calcium handling is also present in MECFS and other metabolic disorders.

    https://www.ncbi.nlm.nih.gov/pubmed/21938724
    Imatinib Treatment Inhibit IL-6, IL-8, NF-KB and AP-1 Production and Modulate Intracellular Calcium in CML Patients

    I think it's worth a try if you can get it approved. I don't personally think the risks of the drug are any greater than wasting my life to MECFS and/or other conditons, but of course, YMMV.
     
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  9. bspg

    bspg Plant Queen

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    Thanks @Ema. Those are really interesting. I probably have some senescent cells that could be cleared out. I often joke about being a 31 y.o. trapped in a 80 y.o. body :D

    My real concern with taking the imatinib is the immunosuppressive aspect of it. I get sick often and have crazy high antibodies to EBV (including IgM & EA-D) and I worry about making these things worse or becoming more sick than I already am.
     
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  10. Gingergrrl

    Gingergrrl Senior Member

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    @bspg I have never taken Gleevec but I was wondering, as a chemo how does it compare to something like Rituximab in the sense of it being an immunosuppressant? I don't mean in regard to the reason WHY you would take it vs. is it a targeted chemo (like the way Rituximab is a MAB therapy and only targets the B cells and nothing else) or does Gleevec act more like a regular chemo and suppress everything?

    I hope that question made sense (and it does in my mind)!
     
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  11. bspg

    bspg Plant Queen

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    I'm not sure how Imatinib works. The science is beyond my level of comprehension. I know that it is a tyrosine kinase inhibitor (TKI) and not a monoclonal antibody but I don't know what tyrosine kinases do or why inhibiting them might help MCAS.

    If anyone can explain how TKI's work (simply) I would love to know!
     
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  12. Ema

    Ema Senior Member

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    From my research, imatinib is more immunomodulatory that straight suppressive.

    This article states, "Thus, Imatinib exerts potent immuno-modulatory effects in vitro and in vivo, which will be discussed together with their clinical relevance in detail throughout this review." I have the whole article if you'd like to read, but it isn't the easiest going.

    The Kinase Inhibitor Imatinib – An Immunosuppressive Drug?, https://www.ncbi.nlm.nih.gov/pubmed/17504122
     
    Last edited: Feb 13, 2018
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  13. bspg

    bspg Plant Queen

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    I've been posting in my mast cell support groups and a few people have spoken up, saying their ME, MCAS, and dysautonomia all improved with Imatinib. :thumbsup:

    Obviously everyone is different and it may not work for me but this is encouraging to hear. :)
     
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  14. Ema

    Ema Senior Member

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    Even though it didn't help me, I still think it is worth trying, FOR SURE, if your doctor is on board.
     
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  15. AlpineX2

    AlpineX2

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    Interesting to know I found a new doctor that wants to prescribe me imatinib I’m nervous to take it, I’m purely formula fed and have been that way for 4 years. So looking for anything that could possibly improve my health I want IVIG more then anything but it’s very hard to find a doc to prescribe it.

    I have MCAS and POTS.
     
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  16. Learner1

    Learner1 Forum Support Assistant

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    My doctor says he's had 4 patients on it and they have done really well. I recently got a secind opinion from a top immunologist who thought it might be very helpful.

    Might be worth a try...
     
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  17. Gingergrrl

    Gingergrrl Senior Member

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    That is interesting that you found a doctor who is willing to prescribe Gleevec (Imatinib) but not IVIG. Does your new doctor think that you would be allergic to the IVIG or is it more of not being able to take on the insurance battle?
     
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  18. Learner1

    Learner1 Forum Support Assistant

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    Isn't Gleevec something like $120,000 a year? That's in the same ballpark as IVIG...
     

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