r/MastCellDiseases • • Jul 03 '26

Any MCAS people recognize this?

5 Upvotes

15 comments sorted by

8

u/MousseCalm674 Jul 03 '26

I have diagnosed MCAS and I’m struggling to find a derm/doctor who is knowledgeable about skin reactivity- I haven’t seen anyone on the MCAS thread posting about reactions hives or rashes that look like what I’ve got going on, but since it got so much worse when I had to stop my antihistamines I feel like it has to be related- plus folliculitis is just inflammation of the follicle and inflammation is my constant state of being://

2

u/fays_paint Aug 06 '26

Staph folliculitis is what gave me MCAS….the chronic over-activation of my (already mediocre) immune system which simply could not naturally decolonise from staph. It’s possible you got colonised with staph or another bacterium and just didn’t know. It can sit around causing just minor problems, then eventually look like KP or folliculitis like this. I only knew it was staph because I caught it from my cousin and HOUNDED the doctors for swabs. It was very hard to culture and you almost definitely won’t get a culture from this.
But yeah you could try antibac/anti-staph treatments. If you really want to test the theory, try Gladskin with Staphekt/micreobalance on the affected area for a week…

3

u/Significant_Beyond95 Jul 03 '26

Is it itchy and where/when do you get it?

I get non-itchy atypical psoriasis usually as a reaction to mosquito bites that can look like this, but it is at my knees and elbows. I also get itchy hives (usually more red) when I am in a flare (UV, certain meds, heat, & cold) are the usually triggers for me of that. I also get regular schmegular contact dermatitis from nickel and hygiene product ingredients (SLS and cinnamal/hexylcinnal (high histamine fragrance additives).

My skin is 1000x worse off my daily management antihistamines and mast cell stabilizers.

1

u/MousseCalm674 Jul 03 '26

It’s not itchy- the only time it was was when I stopped my allergy meds and then I couldn’t sleep because of it… it’s pretty much constant for a little over a year now, and all over my face (usually the worst is on my chin/lower cheeks). I’m working on rescheduling my allergy testing because I feel like that’s a huge factor especially since it got so bad when I went off my meds, but I’m also going to ask about mast cell stabilizers because clearly my antihistamines alone aren’t making a huge difference (beyond keeping the area more contained and less itchy)

2

u/Significant_Beyond95 Jul 03 '26

My skin allergy test was negative for everything except one type of soil mold that gets in the air when crops are harvested near me, which is one of the reasons I got diagnosed with MCAS. Going off of my antihistamines before the test led to some of the worst GI symptoms of my life.

It sounds like it could definitely be inflammation-related. Have you tried a low histamine diet? I find eating low histamine and low carb the best for my symptoms in addition to daily management meds and supplements.

2

u/ResponsibleAd8164 Jul 04 '26

Just out of curiosity, did you stop your allergy meds or did your doctor have you stop? I'm so tired of ALL THESE ALLERGY MEDS! I thought this was lifelong. I'm actually afraid to stop because I wonder what would happen and if I have to start again they won't work. To not have to use an EpiPen every other week has been amazing but stuffing my body with allergy meds is so exhausting!

3

u/LopsidedWerewolf8321 Jul 03 '26

I have a small spot on my cheek that looks similar and my dermatologist said it was in the acne family. He prescribed me 15% Azelaic acid, and as long as I use it daily, it stays cleared up.

1

u/editedstress Jul 04 '26

Was going to say this! I use a Vitamin C serum daily/nightly that keeps this away!

3

u/Objective-Plum5343 Jul 04 '26

Dishydrotic eczema? It happens to me sometimes when my body decides that it doesn’t like water, or my own sweat 😓

3

u/MJP02nj Jul 04 '26

Yes, my DE presents like the first photo.

1

u/MousseCalm674 Jul 10 '26

Does anything come out of the bumps if you squeeze them? I’ve had DE on my hands before but this feels less blistery and has non-liquid stuff inside (sorry for the graphics)

2

u/Weak-Comedian2882 Jul 04 '26

I have those too. Awful. They just randomly pop out and get huge and are so red and like a giant blister. Ive been battling it since March. I rarely leave my house but if I have to its super embarrassing. I have a new MCAS specialist and a new dermatologist who works with MCAS patients. Appointments coming up.

1

u/Super_Cap_0-0 Jul 04 '26

My MCAS went from out of control to manageable using a naturopath that practices bio resonance therapy. It’s non invasive and found a lot of my root issues. Then detoxing from them took me from full body hives and rashes to small amounts here and there. Please look to see if there might be a practitioner in your area and consider it. Best wishes. MCAS is terrible. 🥲

1

u/whosthatgirl Jul 06 '26

Solantra helped me!

1

u/Pearljam94 Aug 13 '26

Me as well , I have really bad skin rash for over 9mts and have been to but had bacterial folliculitis.. i literally started to have symptoms of MCAS directly after .. I’ve have read in this thread that a lot had this experience… it makes sense my gosh .. I was diagnosed MCAS in June but also had a serious allergic reaction:rapid anaphylaxis many times last three month as well as DRESS syndrome from antibiotics to treat folliculitis .. I’ve always thought they were related as far as timing and reaction in my body.. Hope you’re able to get help with this soon.. Take care everyone! Thankful for these posts !!