I’m new and confused - diagnosed with Mast Cell Activation Syndrome

[Jenb01]

I suffer from I have multiple health conditions which are mostly related to my bladder (Interstitial Cystitis and Fowlers Syndrome) I have a suprapubic catheter in place and suffer from recurring and severe bladder infections. I am under the care of multiple specialists at different hospitals in London.

The specialist (Professor K) who oversees my care in regards to the interstitial cystitis recently wrote to me and informed me that my bladder biopsies showed a mast cell count of 53 mm2 and has diagnosed MCAS. Prof K has asked my GP to prescribe Ketotifen but none of my local pharmacies are able to obtain this mediation.

The management and treatment of the chronic and recurring infections is overseen by Dr S who is at a different London Hospital. Dr S has completely dismissed the MCAS diagnosis and said “I was to take it with a pinch of salt as every patient she knows that has seen Prof K is diagnosed with MCAS”.

Nobody has spoken with me to explain what MCAS is, what it means in regards to my health and the impact is has on my other medical conditions. If it helps or is relevant, my recent blood results are as follows:

Haemoglobin estimation: 130 g/L Normal

Total white cell count: 3.2 10*9/L Abnormal

Platelet count: 219 10*9/L Normal

Red blood cell (RBC) count: 4.59 10*12/L Normal

Haematocrit: 0.393 ratio Normal

Mean corpuscular volume (MCV): 85.6 fL Normal

Mean corpusc. haemoglobin(MCH): 28.3 pg Normal

Mean corpusc. Hb. conc. (MCHC): 331 g/L

Neutrophil count: 1.8 10*9/L Abnormal

Lymphocyte count:1.0 10*9/L Abnormal

Monocyte count: 0.3 10*9/L Normal

Eosinophil count: 0.0 10*9/L Abnormal

Basophil count: 0.0 10*9/L Normal

Nucleated red blood cell count: 0.0 10*9/L Normal

My GP is as confused as I am completely confused and I don’t know what I should do.

I would be incredibly grateful and deeply appreciate any advice or suggestions about MCAS and the best way forward please. Thank you ❤️

[Mastomum]

Hi Jenbo. I believe I do have mcas and am lucky my Dr has prescribed ketotifen( it is now available but chemist will need to order it) which i take twice daily and has reduced my symptoms. I take cetrizine daily to reduce histamine which is a huge factor in mcas. I take beta blockers and stick to a low histamine diet too which helps a lot. My symptoms mainly affect skin(fluxhing) heart and digestive tract but used to gdt a lot of cystitis.Have they referred you to immunologist? To check for mastocytosis? Need to test tryptase levels or bone marrow biopsy.

Hope this helps ( most Drs don't believe it exists

[Jess-UKMasto Partner]

Hi Jen, there's a lot that we don't yet understand about how mast cells play into a range of medical conditions that seem to overlap with symptoms of mast cell activation. So, I'm not sure you'd get a definitive answer from anyone about your particular combination of conditions. Ketotifen is available, but you do sometimes have to prod the chemist to order it directly from Alloga, who are the distributors, if the middle-folks (the wholesalers) don't have it in stock. Alloga try to make it easier for the chemists by letting them bill via their preferred wholesalers, so it's worth saying that specifically to the chemist.

As to your blood results, as we aren't medics we aren't in a position to be helpful about those results.

I would recommend you read about MCAS on our website ukmasto.org, on the website of The Mast Cell Disease Society (US) tmsforacure.org and on mastattack.org to get a better understand of what we know and what we don't know yet about the condition. With best wishes, Jess