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I have Mixed Connective Tissue disease in addition to some kind of dysautonomia. For the last two years I have had random bouts of itchy rashes on my face, neck, chest and back. I do not have MCAS according to my Allergy and Immunologist. They have done extensive allergy testing and I'm allergic to NOTHING. My lips and tongue also randomly swell. Do any of you have this? No new meds, soaps, foods, etc. Can your ANS just activate a histamine response for no reason? I'm on an H1 and H2 blocker as well as 5mg of prednisone which I have to get off of... and it is still happening. Today my dermatologist did two punch biopsies to see if he could get more information. Any insight/wisdom would be appreciated. Who else should I consult with? My Rheumatologist says my Allergy and Immunologist needs to do something. The Allergy and Immunologist says the autoimmune diseases is not well controlled. So, nobody is doing anything. I'm about to get a shot of prednisone against the wishes of my Endocrinologist. I have Osteoporosis and my urine is evidently showing bone loss, however that happens. I can't stay in this loop.ūüėĒ

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What about IVIG?  Has your doctor mentioned Rituxen infusions if your autoimmune issues are not well controlled?  We are about to go down the Allergy and Immunology path as my daughter has MCAS and she's just having a real tough time.  Anaphylactic reactions to several things as of late.  Has anyone checked your Tryptase levels?  My daughter never shows anything on allergy testing, Igg, Ige, etc. or the 24 hour urine hystamine catch.  BUT, she does have high tryptase levels (17 was her highest and that was on antihistamines!)  It's a simple blood test.  She has a hematologist who did a bone marrow biopsy just to make certain she did not have mastocytosis, but she didn't.  That was a couple of years ago and he said her mast cells are just far too active, but didn't know enough about MCAS to really treat her on a regular basis (he's mostly oncology).

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  • 4 weeks later...

**UPDATE**  I broke out again on the Tuesday after Memorial Day.  It was all over my face, neck and chest only.  Allergy and Immunology doctor told me it wasn't an allergic reaction, it was autoimmune, and to call Rheumatologist.  He knows I have dysautonomia and said it wasn't MCAS or MCAD.  Called Rheumatologist.  Not autoimmune, it is an allergy. Decided I should see a Dermatologist.  I went to Dermatologist and he said, steroids, it will be fine in a week. I said no. This has been going on for over 2 years off and on and I need an explanation.  Told him I was stuck between a rock and a hard place with my doctors.  Asked for a punch biopsy.  He agreed, then gave me a steroid shot and topical cream.  He said the biopsy could tell between allergy or autoimmune.  Guess what... it was neither.  The under layer of my skin is inflamed.  He said to take that info back to both doctors.  He said it is rare and most often seen in people who are having a reaction to one of their medications and the solution is to go off all medications for a month, then re-introduce them one at a time, waiting a month before introducing the next one.  Obviously, I can't do that.  Also, I'm on about 20 meds. It would take 2 years.  Has anyone dealt with this? Is this what MCAD or MCAS is like? Do I need to be pushing this idea with the Immunologist in my appointment on Wednesday?

Help!

Signed,

Itchy in Orlando

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Are you sure your doctors even know what MCAS is? It is a relatively newly recognized illness, it is possible they were out of medical school before it was taught (I am not sure if it is taught even now)

They may have heard MCAS and thought, shes probably thinking about mastocytosis or something else

From what I know of MCAS, it can present quite differently in different people so like POTS there is not one picture of what MCAS looks like

Also, due to the vague nature of the symptoms (and the sheer number of possible symptoms MCAS can cause) it is difficult to diagnose, you would really need to see an expert

I would recommend doing this though as treating my MCAS has helped me enormously  (but your issues could also be due to something else entirely)

Hope this helps

 

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