The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
Discuss the article on the Forums.

Successful Targeted Treatment of Mast Cell Activation Syndrome with Tofacitinib.

Discussion in 'Mast Cell Disorders/Mastocytosis' started by impossible, Apr 20, 2017.

  1. impossible

    impossible

    Messages:
    56
    Likes:
    48
    Another one from Afrin:

    Abstract
    Mast cell (MC) activation syndrome (MCAS) is a collection of illnesses of inappropriate MC activation with little to no neoplastic MC proliferation, distinguishing it from mastocytosis. MCAS presents as chronic, generally inflammatory multisystem polymorbidity likely driven in most by heterogeneous patterns of constitutively activating mutations in MC regulatory elements, posing challenges for identifying optimal mutation-targeted treatment in individual patients. Targeting commonly affected downstream effectors may yield clinical benefit independent of upstream mutational profile. For example, both activated KIT and numerous cytokine receptors activate the Janus kinases (JAKs). Thus, JAK-inhibiting therapies may be useful against the downstream inflammatory effects of MCAS. The oral JAK1/JAK3 inhibitor, tofacitinib, is currently approved for rheumatoid arthritis and is in clinical trials for other chronic inflammatory disorders. Herein, we report two MCAS patients who rapidly gained substantial symptomatic response to tofacitinib. Their improvement suggests need for further evaluation of this class of drugs in MCAS treatment. This article is protected by copyright. All rights reserved.

    This one seems like it has the potential to help alot of mcas patients.
     
    pibee, zenzen, bspg and 5 others like this.
  2. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,929
    Likes:
    5,082
    Southern California
    Has there been any more information on this?
     
  3. impossible

    impossible

    Messages:
    56
    Likes:
    48
    Ruxolitinib improves symptoms and quality of life in a patient with systemic mastocytosis.
    Yacoub A1, Prochaska L1.
    Author information

    Abstract
    BACKGROUND:
    Systemic mastocytosis is a clonal myeloproliferative neoplasm associated with constitutional symptoms from mast cell mediated chemical and cytokine release. According to the literature, Ruxolitinib, a JAK1/JAK2 inhibitor, has been shown to reduce symptoms related to proinflammatory cytokine release in other myeloproliferative neoplasms.

    CASE PRESENTATION:
    Here we present a case using Ruxolitinib for disabling constitutional symptoms despite complete bone marrow response in a patient with aggressive systemic mastocytosis. Assessment tools used to monitor symptoms in previously published Ruxolitinib trials were adopted to track symptom improvement and quality of life.

    CONCLUSIONS:
    Ruxolitinib significantly improved symptoms and quality of life in our patient with systemic mastocytosis.



    I read the complete study and it seemed like she had a pretty substantial improvement
     
    zenzen likes this.
  4. impossible

    impossible

    Messages:
    56
    Likes:
    48
    Ive been using artemisinin for a little over a month, for its jak inhibiting/socs boosting properties, and its been very helpful so far.
     
    pibee and zenzen like this.
  5. Santino

    Santino Senior Member

    Messages:
    207
    Likes:
    16
    @impossible How did it go for you with jak inhibition so far?
     
  6. impossible

    impossible

    Messages:
    56
    Likes:
    48
    It helps. I'sm super sensitive to anything immune boosting at all, or get dramatically worse when i get sick, etc.

    Basically my mast cells are super sensitive to cytokines, so anything I take that has jak inhibiting properties makes a noticable difference in all my symptoms, especially how sensitive i am to foods and chemicals and the symptoms that result from those reactions.

    Same goes for anything that inhibits the PI3K pathway, greatly diminishes my chemical sensitivities and allows to move around more and be more physical without triggering symptoms as bad.

    I dont tolerate too many things well enough that i can take them every single day, so i rotate different things, mainly herbals, and since i actually got an RA diagnosis, xeljanz is now on that list too.

    I just wish I would have known all this a few years ago, after recieving lyme treatment and improved to the point that i would have tolerated all the treatments. Unfortunately, i recieved a couple of immune stimulating treatments for lingering symptoms that turned out to be undiagnosed mcas, which then made things this bad. I would have been in really great shape.
     
  7. Jasper80

    Jasper80

    Messages:
    37
    Likes:
    83
    Hello Impossible,

    are you Salicylate sensitive? Do you know if artemisinin is ok for Salicylate Sensivity?

    Merci :)
     
  8. impossible

    impossible

    Messages:
    56
    Likes:
    48
    Very much so, which is terrible because i used to feel sssoooo much better from taking white willow and aspirin, and I even have a hard time with veggie's and getting proper nutrition now. I tolerate artemisinin quite well most of the time. I use biopure and I use to take, i think, nutricology, but its been a while since i've used that brand and i think they've added other ingredients to it since i last bought it.
     
    ukxmrv likes this.

See more popular forum discussions.

Share This Page