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Mast Cell Disease & Granuloma Annulare

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michelle43974
michelle43974

Hi everyone! I've been diagnosed through confirmed biopsies with both mast cell activation disease and granuloma annulare. I believe they are connected because my GA first appeared when my MCAD symptoms really ramped up.

I did some research and found Dr. Afrin (mast cell disease specialist) talking about GA being a symptom that doctors see but don't connect to MCAD because they don't know about MCAD. I also found a strong link between the TNF (tumor necrosis factor) mediator that my mast cells release and the formation of the granuloma rings.

Here's more proof: when I went on my mast cell stablizing medications my granuloma ring disappeared. If I get triggered badly or miss doses of medicine it comes back, as a fully formed ring. Otherwise it is gone, or looks gone at least.

So I thought I'd share this in case it is new information here and ask if anyone else has both of these rare diseases?

0 likes, 7 replies

7 Replies

  • j0603
    j0603 michelle43974

    Posted

    Hi Michelle,

    Thank you so much for posting this information it is very interesting. I have no idea what MCAD is but I will look into it right away.

    Is the medication you take for MCAD something that calms the immune system? I took Plaquenil for my GA and within 3 months it was gone.

    Thanks again 😀

    • michelle43974
      michelle43974 j0603

      Posted

      Hi,

      The medicines are mast cell (immune cell) focused so I am on high doses of antihistamines and cromolyn sodium. But the weird thing is I don't think MCAD is considered an auto-immune disease, although it seems like it should be!

      I see an immunologist and a hematologist for MCAD. I read GA can be related to Lupus and my immunologist told me I should see a rhumetologist if I want to be tested for auto-immune diseases?! He basically said MCAD is an immune system disease, but not auto-immune. 

      Another interesting angle to my experience is my first GA appeared in 2014 after using soy based estrogen cream which flared up all of my symptoms of my mast cell disease really bad (and helped lead to my diagnosis).

      I actually wrote an article you can google called "Granuloma Annulare & Mast Cell Disease: A Case Study (Me)". I am hoping to unravel my own mysterious "2 rare diseases that have no apparent connection" thing. Hopefully this helps someone else who may be undiagnosed with MCAD at this point because it took me 44 years to finally get my diagnosis after being sick my entire life with allergic and inflammatory symptoms head-to-toe.

       

  • jilly1959
    jilly1959 michelle43974

    Posted

    This would make sense as GA is an auto-ammune deficiency.

    I, too, have GA and I am exploring the reasons as to why. I don't have Diabetes, and I am never ill, I've tried leaving out gluton, fat, alcohol but nothing works.

    I am going to start taking Luteolin and see if that works, I have evn been taking MSM powder but after 15 years, I am about to give up.

     

    • j0603
      j0603 jilly1959

      Posted

      Hi Jilly,

      Seems the incidence of autoimmune disease (in general) is becoming epidemic almost. I am in year 3 with my GA and the two successes I have had are cortisone injections which I reserve for the lesions most visible and Plaquenil which is an immune suppressant.

      Currently I am off of the Plaquenil as I hoped for remission BUT no such luck and I will be going back on the drug again most likely because my rings and lesions are multiplying!

      Yikes! Hang in there.

  • Tiggy
    Tiggy michelle43974

    Posted

    Hi Michelle. This is really interesting and am keen to learn how you get on. I have had generalised GA for 8 years now and have large lesions on my limbs and chest. I have periods of feeling unwell and now have high cholesterol and hair thinning. I tried Minoxidil but had only a partial effect and decided to discontinue it last year especially with the hair thinning as a possible side effect.

    I listened to the Webinar on MCAD and found it very though provoking! I will trial the antihistamine.

    I live in New Zealand and am not aware of anyone else who has generalise GA here. 

    Many thanks

  • Alopiano87
    Alopiano87 michelle43974

    Posted

    So it has been confirmed by biopsy that i have GA and it is SO bad and on my hands and so visible. My immunologist is pretty sure I have MCAS along with histamine intolerance. Although she has no way of testing for it as that is outside of what they teat for. What stabilizing meds for MCAS are you taking that are clearing up your GA? Eating a low hist diet is really helping most symptoms but I'm having a really hard time clearing up my GA. I'm desperate to get this cleared up.

  • joanne17318
    joanne17318 michelle43974

    Posted

    Hi there.

    Ive had GA for about 3 years now, ( diagnosed by biopsy), and strongly suspect i have MCAS also.

    I have been taking Plaquinel for about 5 months with no effect as yet.

    I now looking at antihistamines to take.

    My symptoms include: extreme face flushing, chronic skin itchiness, chronic diarhoea, GERD.

    Any thoughts?

    Doctors havent checked for MCAS, but i have a lot of the symptoms.

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