MCAS

[Stm252]

Does anyone have mast cell activation syndrome?

[TheHud]

Hi Stm252

I think there is some ambiguity in the medical world on MCAD or MCAS and more importantly Mastocytosis which is the currently fully recognised condition. Plus an awful lot of ignorance.

I borrowed this funny explanation

Mastocytosis and Mast Cell Disorders

A mast cell is a type of white blood cell. Mastocytosis is a condition in which there are too many mast cells in the body, Another disorder involves a normal number of mast cells, but they are more active than normal.

What sort of mast cell disorders are there?

You've basically got three main types:

Mastocytosis - there are too many cells.

Mast cell activation syndrome - there are normal numbers of cells but they zap around like hyperactive 2-year-olds. It's also sometimes called mast cell activation disorder.

Localised mast cell disorder - for reasons best known to themselves the mast cells hang around together in one place, drinking cider and making a general nuisance of themselves.

nhs.uk/conditions/mastocyto...

hra.nhs.uk/planning-and-imp...

I have not officially been diagnosed with anything, yet, but seeing as I can only exist by taking 30mg of loratadine and 200-300mg of ranitidine, omeprezole 20-40mg a day and my can't eats, can't smell, etc are escalating at a rate of ridiculous, I suspect I am going to have to get properly tested. I also have the classic mystocytosis type rashes, skin reactions to everything and always have. The scars and hyperpigmentation on my skin is apparently far more extreme than anything BD produces. So is the mess in my mouth apparently, so I am have been referred on for further testing. The best testing for this is an immunologist I believe, the NHS has non. So it has to be via Dermatology, possibly haematology, I am waiting for haemo, hopefully Nov and not sure, but oral for biopsies. I may locate a blood place and do the gene testing to see if I have the right markers. But haemo is because my blood is totally scewed with acute inflam markers and neutrophils rising.

However, I firmly believe that Mastocystosis and MCAD etc are an almost inevitable result of a system thats been under attack from an over active immune system for many, many years, without getting any treatment to reduce its activity. It's like your body is bound to become flooded with mast cells behaving badly. Nothing has ever stopped them. The myeloproliferative disorders are the flip side and Mastocytosis/MCAD can become one of the real nasties, another reason for making sure you check your own blood tests if you have immune diseases. Here in the UK especially don't leave it to your GPs because they do not have a clue what to look for (most, not all) and don't know what to test for. Even check hospital tests, look out for the odd things that the specialism may not be interested in

nhs.uk/conditions/mastocyto...

[Stm252 in reply to TheHud]

Thank you! Those links we're great they are starting me on Zantac plus cromolyn plus cyproheptadine. Giving it a whirl to see whether it helps. It's hard to believe that one could have Behcets and then this drag on top of it. But may explain why I have been so darn sick and hard to control and manage the disease. Oh there's been more than one going! It's pretty miserable and I am constantly flaring!

[TheHud in reply to Stm252]

Good luck, it may take time to see improvement. I am only taking the basics but know about it when I don't

[Stm252 in reply to TheHud]

Thanks so much!

[Stm252]

Same. Plus cromolyn.