Some patient experiences with mast cell activation syndrome

We asked our followers on Facebook about their experiences with MCAS – and as you can see, they vary significantly. Some diagnosed, some not. Some take medications, some self-manage triggers, some do a combination. The range of how severely individuals are affected is also hugely variable.

Please note, we have made minor edits to spelling and grammar for readability. The original posts are available on the HMSA Facebook page.

Yes I have it - helped by low histamine diet and Ketitofen (after a battle with my GP to prescribe it!), but have a low level of symptoms almost constantly. Avoiding triggers is key - so identifying which foods, toiletries, some medications (fillers/colourings can be troublesome), situations, and environments make you flare up. Sometimes it’s like playing detective to work out what has triggered me into a flare - I’m mid 40s so definitely some hormonal involvement too which is fun!! Flare ups would include full body itching (especially my head which is the worst!), red blotchy skin around joints, popping in ears with increased tinnitus and ear pain, fluey feeling (so runny nose, aches and fatigue, sore throat), severe bone pain (I call it ‘potato peeler pain’ as it was bad at night and dreamt someone was using a potato peeler on my shin bones 🤣). I was lucky enough to be able to afford to see Dr Tina Peers who is one of the leading specialists as I was rejected from the NHS clinics as they ‘don’t recognise MCAS’. It’s unfortunately a familiar story in the MCAS community and many of us have been left to get on with it ourselves with no treatment.

Teresa Lyon

I take antihistamines every day and stay away from known triggers, if it happens then I always have one a day Benadryl on me at all times and take as many as needed to alleviate symptoms and jump in a cool shower: it happens fairly regularly so just have to take each day as it comes.

Rachel Godier

Mine became really noticeable with extreme blotchy red hives and rashes all over my face. My eye lids can also swell. The skin would leave a scaly feel over my eyes then up through my scalp and down my face. It looks very disturbing. I also started having wheeziness and shortness of breath. With Extreme fatigue on going. I have already been diagnosed with:

1- A genetic auto immune eye disease

2- Severe bile acid malabsorption

3- Hypermobile Ehlers Danlos syndrome

4- Allergy Asthma

5- Possible anaphylaxis with MCAS

I got the best answers from rheumatology. I'm waiting to be seen in immunology but it's a 13- month waiting list up North!! Also awaiting allergy testing. As I already have a few allergies that they've seen in blood tests.

Sarah Jane Whitaker

Daughter has it, plus EDS, PoTS and ME. No hives or flushing at first, just fatigue and brain fog and tachycardia and digestive issues, itchy legs after a shower. Then just before our appointment with a specialist she started getting hives all over, stomach cramps, sore throat in response to all sorts, even the smell of fish frying... now we all have symptoms of it... son diagnosed with MCAS too. I have developed all over itching in response to the menopause and husband gets digestive issues from high histamine foods plus back and neck pain.

We have found mould in our house and daughter's MCAS seems to be improving now she has moved out and is on binders. She had got to the stage where she was no longer able to attend school, but now we have a bit of hope. And her EDS and PoTS symptoms seem worse when in an MCAS flare.. so maybe these won't be so problematic once mould is dealt with...

Julia Panther

Mine started after Covid. I've had dietary reactions to foods for about 20 years, but I'd figured out which foods I couldn't eat, and the reaction was always the same. But when MCAS hit, I started reacting to way more foods (and other things like shampoo) and it wasn't just digestive distress anymore. I get itching all over my body (with zero rash), streaming eyes, tight chest, burning/tingling lips etc. Since starting fexofenadine things have been better, but I've recently had a cough for 3 months that my inhalers and oral steroids didn't clear, and my chest CT scan is clear, so the doctor isn't sure if it's an MCAS thing too.

Being aware of high histamine foods and histamine liberators helps. A lot of them are foods I used to love and miss terribly but avoiding them does help.

Amanda Shortman

I'm lucky that mine (suspected) is quite mild. I don't get anaphylaxis, mostly I get a sore throat, rhinitis, fatigue, headaches, and a worsening of my joint issues. As long as I can remember I've had these symptoms in response to certain smells - I just assumed every kid felt ill when their parents filled up the car! It was only after I moved back home where there were two heavy smokers after 6 years away and had an awful reaction which left me barely able to swallow water for days that I realised something more was going on. Now I know my triggers (smoke, perfume, car fumes, paint, other VOCs, and, weirdly, vibrations) I just do my best to avoid them. I've not explored medication as my attempts to get medical help have, inevitably, resulted in gaslighting.

Sarah Argrave

I thought we must have bedbugs, or fleas or something for ages 😂

No pest controller could find anything, traps caught nothing, I tried cream in case it was some weird scabies, bug bombed the house and car - everything…

Mentioned it to a Dr who has EDS herself and she suggested cetirizine and ranitidine twice a day. Itchy bite-like spots disappeared. If I forget to take them, they come back within a couple of days.

I’m not what I’d consider an “allergic” person generally. I do get flushing, sun allergy when first exposed, and can write on my skin but that’s normal for me.

Tamsin Bromley-Rahlke