MCAS, but possible Masto?

[Loulou8484]

Hello,

I'm almost 39 and have a diagnosis of MCAS through Dr Claire Taylor in Perth. I've been treated for MCAS for just over a year, but have been symptomatic in one way or another all of my life. I take fexofenadine, montelukast, famotidine and quercetin at present for stabilisation. I have what looks like a petechial rash all over my abdomen, and on other areas of my body. I am concerned that it is TMEP or Masto. I am under dermatology as I have recently been treated for malignant melanoma, but they said they didn't know what the rash was but it is nothing to worry about. Dr Taylor has prescribed me Sodium Cromoglycate privately, but at over £400 per month for the prescription, I cannot afford to keep it up. I suppose my query is in terms of having the rash properly diagnosed and the appropriate treatment commenced, if appropriate. I'm in Glasgow, if that is helpful?

Take care,

Linda

[Optimism68]

Hello, don’t know if this helps you, but I suffered from the same rash for years, was finally diagnosed this year with mastocytosis and now I’m able to get all the medication I need without charge as the diagnosis deems you exempt from NHS prescription charges

I am prescribed both fexofenadine and sodium cromoglycate

Would suggest asking your doctor for a referral to the haematologist at the hospital and asking them for a skin biopsy and also a bone marrow biopsy, both of which I had for the diagnosis

It is a condition which is manageable

Best regards, Scott

[Loulou8484 in reply to Optimism68]

Thank you so much. This is helpful.

[Mastomum]

Glad you have a diagnosis as that half battle. Have you had a tryptase test? As you under a skin specialist already and had melanoma they could do a biopsy if cutaneous mastocytosis was suspected. How can they say they "don't know what it is but nothing to worry about"I have no diagnosis but lots of triggers I have learned to avoid. If I eat low histamine food, avoid sunlight, perfumes, stress, illness (if only that simple) take cetrizine, ketotifen, bisoprolol (as heart is affected) and take Benedryl whenever I get a reaction I can mainly avoid hospital. I only get rashes occasionally. Tend to get flushing instead. Go back to person who diagnosed you. All best, Amanda