May 12, 2017 Is International ME/CFS and FM Awareness Day
International ME/CFS and FM Awareness Day is May 12th, 2017. Jody Smith shares some information about upcoming events and ways you can be heard ...
Discuss the article on the Forums.

Has anyone recovered from MCAS

Discussion in 'Mast Cell Disorders/Mastocytosis' started by Aerose91, Aug 14, 2018.

  1. Aerose91

    Aerose91 Senior Member

    Messages:
    1,175
    Likes:
    817
    It seems like it can have many triggers; infection, toxins, trauma, food etc..

    Has anyone had success in healing this by treating underlying factors? It seems as though there is always a trigger and that MCAS doesn't just form on its own
     
    Forçe e Honra likes this.
  2. Wonkmonk

    Wonkmonk Senior Member

    Messages:
    782
    Likes:
    1,073
    Germany
    I think @Gingergrrl is in long-term remission for a while with IVIG and (more recently) Rituximab. The trigger as I remember was toxic mold exposure.
     
    Forçe e Honra likes this.
  3. Aerose91

    Aerose91 Senior Member

    Messages:
    1,175
    Likes:
    817
    IVIG. Damn, i hear that helping so many ppl
     
  4. Ema

    Ema Senior Member

    Messages:
    4,718
    Likes:
    6,925
    Midwest USA
    I would say that I am also in remission. I only take one Zyrtec at night now and have no food restrictions to speak of.

    There wasn’t any one specific treatment I could say helped me the most though. I also did IgG replacement with Hizentra but the worst of the reactions were over by then anyway.

    Mostly I think we just manage the symptoms the best we can until it goes into remission.
     
  5. Aerose91

    Aerose91 Senior Member

    Messages:
    1,175
    Likes:
    817
    So you didn't do any particular therapies? You just slowly recovered with time?
     
  6. kelly8

    kelly8 Senior Member

    Messages:
    138
    Likes:
    257
    Hi @Aerose91 ,
    I was diagnosed with mcas. However I am now questioning that diagnosis because after about 5 years I am no where near where I was then. I do still take loritadine and ranitidine. However, some of the other meds didn't seem to work for me. Which is making me question the diagnosis.

    At one point I could only eat 6 foods and was needing to live in a bubble because scents and environmental stuff was causing me to break out in hives. I spent a long time detoxifying my environment and trying to let my body heal before I started working foods back in. When I did it was the smallest amount, one at a time. In case I had a reaction.

    I still can't eat gluten. But I've been able to work most other things back in. I also work really hard at keeping my inflammation down if I can. I also did a major gut cleanse recently and have noticed more improvements with that.

    So I'm slowly digging out of the hole... Again not sure if I actually had mcas but was diagnosed with it.
     
  7. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    12,436
    Likes:
    36,172
    USA
    Sorry, I did not see this thread or get an e-mail alert that I was tagged! I developed severe MCAS in 2015 which ultimately resulted in me having anaphylaxis to all food but water and being hospitalized. I was on IV Benadryl and then Benadryl injections and a boat-load of meds which I had to take 30 min before eating about 4-5 foods. I also had severe reactions to odors/smells.

    I believe that I had sub-clinical MCAS for most of my life and matched on about 35+ of the 50 symptoms listed by the Masto Society (even obscure things like being allergic to aspirin, being allergic to Yellow Dye #5, having unexplained bruises plus all the major symptoms). We believe the final trigger to my immune system was several years of toxic mold exposure in my former rental as @Wonkmonk mentioned.

    Once I started high-dose IVIG, the MCAS went into remission. It went into remission from IVIG alone, almost a year prior to starting Rituximab. The Ritux put the rest of my symptoms into remission but it was the IVIG alone that put the MCAS into remission. My MCAS doctor said that IVIG put many of his prior patients into remission so he was not at all surprised by it (even though I was)!

    I stopped my entire MCAS med regime and no longer take any MCAS meds 30 min prior to eating. Because I am now done with IVIG and in the process of tapering off Cortef, I continue to take one set of MCAS meds in the evening to be safe. One set for me used to be nine different meds but it is now four: Zyrtec, 1/2 Pepcid, Ketotifen, and Quercetin. I've had days that I have not taken the set of 4 meds (at all) and had absolutely no problems. But b/c of the Cortef taper and stopping IVIG, I am continuing to take them and see no down-side (and prefer to be safe than sorry).

    I continue to avoid the foods and meds that I was allergic to life-long, and my MCAS doctor told me that for as long as I live, I should avoid iodine based IV contrast dyes. I also continue to avoid FD&C food dyes (especially Yellow #5 or "Tartrazine" which caused my absolute worst anaphylaxis reaction). I have no other food restrictions but continue to limit the highest histamine food offenders. If I was at a special event and they were served, I can eat them, but in general, I prefer not to put the extra stress on my body if not needed.

    So while I am cautious b/c I never want to re-live the horror of 2015, I consider myself to be in remission from MCAS. I will never say "cured" b/c I believe it is possible for my symptoms and allergic reactions to come back, especially if I were to be exposed to toxic mold again in the future.
     
    Last edited: Aug 18, 2018
  8. keenly

    keenly Senior Member

    Messages:
    694
    Likes:
    730
    UK
    Briefly, whilst on Align my MCAS completely went. That shows me this problem comes from the gut.
     
    ljimbo423 likes this.
  9. Ema

    Ema Senior Member

    Messages:
    4,718
    Likes:
    6,925
    Midwest USA
    I did lots of treatments, but yes, the worst of the MCAS for me was in 2007-2009. I fully crashed in late 2009 but the MCAS reactions were milder at that point than the other MECFS symptoms, long before I’d had any of the thousands of treatments I eventually tried.

    So, I do tend to think relapse and remission is normal and that it is possible for severe flares to reverse without aggressive treatment as well.
     
  10. MorganGal

    MorganGal

    Messages:
    2
    Likes:
    1
    @Gingergrrl would you be willing to share who your doctor is?
     
  11. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    12,436
    Likes:
    36,172
    USA
    I will send you a PM.
     
  12. kskiska

    kskiska

    Messages:
    6
    Likes:
    0
    @Gingergrrl could you Pm me your doc also? If you didn't mind sharing? Thank you.
     
  13. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    12,436
    Likes:
    36,172
    USA
    I can PM you but I have confirmed (since writing that prior post) that my MCAS doctor is no longer taking new patients. He works at three hospitals and is planning to retire in the next year (which is a bummer). I tried without success to refer other patients to him but he is no longer seeing new patients at all :(
     
  14. Critterina

    Critterina Senior Member

    Messages:
    1,224
    Likes:
    717
    Arizona, USA
    Ema, If there was a "super like" I would put that on your post.
    I just got a doctor who thinks I have MCAS - evaluation ongoing.
    Much love your way!
     

See more popular forum discussions.

Share This Page