Experiences with

Mastocytosis

hi I am wondering if there are any other parents of a child with Mastocytosis Uticaria Pigmentosa? My son was diagnosed at 4 months by great ormond street, given ketotifen, and seemed to “grow out” of it as the suggested he would.

Does anyone get neurological symptoms with MCAS or Mastocytosis? (Eg. Numbness, tingling, muscles twitching, etc...) As well as the changes towards foods, some products, etc? I am also now showing severe signs of hypermobility and it is causing clicking joints, subluxations, and popping ribs.

I was diagnosed with Cutaneous Mastocytosis this year. I’ve always had a few spots on my legs but nothing to write home about. Covid came (serious dose) and my spots got worse and didn’t leave. Again only on my legs.

I have told consultant that I have mastocytosis. They say it is safe. Does anyone have experience of this type of diagnostic scan? Apart from the usual being prepared for allergic reaction, I justvwondered if anyone has other wisdom to impart?

Subsequently, at a different hospital, they confirmed that I had the indicative genetic mutation and a bone marrow biopsy showed that I have Systemic Mastocytosis (Indolent). I also have Ehlers Danlos Syndrome hypermobility. There seems to be an association between these two conditions.

I'm Polish American though, and was diagnosed with indolent systemic mastocytosis in the states, when I was visiting my parents for the summer two years ago. I have struggled a lot with the diagnosis, and started getting symptoms shortly after, (maybe from excessive stress?).

my C-kit results is negative and my tryptase is higher than the last test but still normal so likely only cutaneous Mastocytosis, however I know that 20% of people have a negative C-kit with systemic involvement so am wavering on the biopsy.

i guess i'm just here to say hi and try to get some ideas of how to cope while i wait on a competent doctor to get me to the next steps. i am aware mcas and mastocytosis are not the same thing, but as they're related and there isn't an mcas support group, i thought i'd join here. 🤗

hi, I am new to this group, I have only recently been diagnosed with cutaneous mastocytosis, it’s taken nearly 12 years to get that. I’m still learning about it and it would be nice to connect with others that deal with this aswell 😊

Do I ask about Mastocytosis. Or do I let the GP keep prescribing Steroid cream and ramp up my histamines. She said there was wiggle room to add 1 more Loratadine, which made my heat sink frankly. I’d really appreciate some advice on the rash.

Hi Has anyone seen Dr Grattan I believe he has an interest om al 3 of these Conditons I'm unsure what I have but I have symptoms of All 3 ie not sure which one Hes in London but does he take m Nhs patients outside of London or if not privately Thanks

I am trying to get an appointment with my GP and want to raise the question about being tested for Mastocytosis. what does the GP need to do to refer me for tests? And where do I get referred to in London? Many Thanks

The UK Mastocytosis Support Group are very pleased to be collaborating with Blueprint Medicines and a team of patient advocacy groups and researchers from around Europe in an effort to gather really important information about what it’s like to live with systemic mastocytosis (SM). 

Apologies it's a bit of a depressing post - and I don't even know for sure whether the issue is MCAS/mastocytosis etc because I've never had any tryptase (etc) testing.

And systemic mastocytosis. For mylo i on no medication. For mastocytosis i taking 3 cetriizine .and 1 Lotradine a day. Have heard nothing from guys since 13 july was supposed to have appointmen in 5 weeks. My back aches .as my shoulder hands knee feet . Just had lung infection.

When I spoke to my GP about the possibility of a mast cell disorder, she said something like "I thought Mastocytosis was to do with hives and anaphylaxis, they didn't really teach us about it" and said she'd have to go away and research it and get back to me.

The countdown is on...........We will be sharing numerous posts over the coming 14 days on the lead up to the 5th International Mastocytosis and Mast Cell Diseases Awareness Day.

Hi - I'm Kay and I have indolent systemic mastocytosis. I have just been phoning round pharmacies (without success), looking for Ketotifen 1mg tablets as there seem to be supply problems yet again.

Mastocytosis and Mast Cell Diseases Awareness Day is coming on October 20th! We will be sharing a series of images that can be shared on social media to help others learn about our conditions-- and to help them understand how we are affected.

Say what YOU need to live well with your mast cell disease today.