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Mastocytosis or MCDS with autoimmune disease

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Tumtum1963
Tumtum1963

I have had random allergies, eczema and anaphylaxis three times in my life - once to a cat and twice as reactions to medications.

I am a 53 year old post menopausal with diagnosis of hypothyroydism and Rheumatoid Arthritis (non erosive/ remitting) - both autoimmune but neither conforming to the classic pattern.

I have a widespread and longstanding small fibre neuropathy and upper GI/ IBS-C problems and am under rheumatology, neurology, oral surgery, gynaecology, gastroenterology (colonoscopy) and endocrinology. I have disequilibrium dizziness most of the time.

At a recent appointment with rheumatology I asked the registrar whether I might have a mast cell disorder. My late mum had a bee/ wasp anaphylactic response but I've never been stung so don't know if I've inherited this or not.

All other connective tissue diseases are looking very unlikely for me so I'm trying to get to the bottom of my small fibre peripheral neuropathy and GI/ gynae problems. My ESR/ PV and CRP are always raised to high and I have a high total protein but negative Bence Jones. I take B12, Vagifem, Losartan, AdCal D3 and have taken various types of OTC antihistamines for most of my life.

Has anyone else had similar issues that span MCDS and autoimmune disease?

0 likes, 8 replies

8 Replies

  • Tumtum1963
    Tumtum1963

    Posted

    Ps I forgot to say that my rheumatogist will hopefully refer me to a haematologist and immunologist next, having taken many blood tests.
  • elizabeth16996
    elizabeth16996 Tumtum1963

    Posted

    Hello there, I have lupus/ Sjogrens and mast cell disorder. I take sodium chromoglicate which is a mast cell stabiliser and high doses of antihistamines to control reactions. For lupus I take azathioprine which is an immunosuppressant. I'm sorry you have been so unwell. It turns into such a jumble of symptoms when we have overlapping conditions but starting to get a handle on things now. There is a UK mastocytosis group on Facebook which is good. Lots of info xx
    • elizabeth16996
      elizabeth16996

      Posted

      I'm what's called a leaker rather than a shocker. I react to many things including most foods, but hardly ever anaphylaxis, just face flushing, itching, anxiety, tummy stuff etc.
  • elizabeth16996
    elizabeth16996 Tumtum1963

    Posted

    Hello there, I have lupus/ Sjogrens and mast cell disorder. I take sodium chromoglicate which is a mast cell stabiliser and high doses of antihistamines to control reactions. For lupus I take azathioprine which is an immunosuppressant. I'm sorry you have been so unwell. It turns into such a jumble of symptoms when we have overlapping conditions but starting to get a handle on things now. There is a UK mastocytosis group on Facebook which is good. Lots of info xx
    • Tumtum1963
      Tumtum1963 elizabeth16996

      Posted

      Hi Elizabeth. I don't yet know whether I have a mast disorder or another connective tissue disease. Three rheumatologists have said that I don't have Lupus, scleroderma or Sjogrens as I haven't the autoabtibodies and nor are secondary features such as Raynauds or Sjogrens progressing as they would if they were primary diseases. I've not even been diagnosed with UCTD because RA presented quite clearly svdcclassicsly five years ago so that was my then diagnosis.

      I've had a slow form of anaphylaxis with Sulfasalazine and Hydroxichloraquine and pancreatitis with Azathioprine. I also had serious GI problems with Methotrexate which I took for two years by injection. I'm not sure if mast cell disorders would account for these but all my life up until menopause I suffered from eczema, alopecia and rhinitis plus random swelling/ anaphylaxis allergies to cats, hair and skin products and insect bites.

      Now things are all internal in my small nerve fibres and guts - burning mouth syndrome and woman parts with lots of scar tissue that has hardened, carotid arteries, one kidney etc. I thought this was Sjogrens/ RA but the rheumatology registrar thinks not. So I've asked him to refer me for investigation into possibly Mastocytosis. I do have highly fluctuating ESR and CRP and these paired bands in my spinal fluid. Wasn't getting anywhere with rheumatology or neurology so I'm hoping to see immunologist and haematologist next. Did you get a confirmation of Sjogrens in your autoantibodies or lip biopsy?

    • elizabeth16996
      elizabeth16996 Tumtum1963

      Posted

      Hello there, when I went to see my gp he divided up my symptoms into groups that belonged to different systems... it was so overwhelming at the time so I understand the need for clarity, answers and relief. I ended up with two groups - allergic and what was left over. The allergy group included rhinitis etc. for the rest I was lucky in that I have very typical test results that cry out lupus and Sjogrens. I have positive ANA, anti ro antibodies and rheumatoid factor. I'm also consistently lymphopenic and my symptoms are very typical for lupus. Mast cell disorders can cause so many different symptoms I would definitely recommend finding a doctor who knows something about it. Try the UK mastocytosis group as they know which doctors are most helpful. Hope that helps.
    • elizabeth16996
      elizabeth16996

      Posted

      If you join the UK mastocytosis support group on Facebook there is a very knowledgeable lady called Irene Wilson who should be able to help with info about the condition and which doctors to see. Good luck x
    • Tumtum1963
      Tumtum1963 elizabeth16996

      Posted

      Thanks so much Elizabeth. It is hard when things are very unclear in terms of bio markers, symptoms etc. They all know I have autoimmunity - and I know I did have RA for a couple of years, but now it's all a bit of a muddle and doctors are apt to shrug and say they can't help until something worsens enough to reveal itself again. In some ways I was much sicker when I was younger - but the neuropathy and dizziness and bad taste, GERD plus relatively new bowel and gynae problems get me down. My markers keep taking them back to a type of cancer, Multiple Myeloma. I'm reasonably certain it's not though. I definitely have Hashimoto's Thyroid disease and feel that something isn't right with my markers for this too. It's hard work playing amateur detective! I will look at the FB group you mention. Many thanks again. 
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