Cutaneous Mastocytosis and Epi Pens

[amadamico]

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 attended dermatology and haematology for lots of tests including bloods, Bobs Scan, CT Scan with dye. They confirmed it wasn’t in my bone marrow, organs or lymph nodes, it’s just my skin. Anyway they had a big discussion on whether I should carry an epipen and have decided that although the risk is low it is not zero so I have to get them. I’ll get them next week and wondered what life changes people have had to make having these and do they affect holiday insurance and flying? Any experience or tips would be appreciated. Happy to share parts of my diagnosis journey too should anyone want any further details.

[Marcilhac]

i have had epipens for ages and there is no problem as regards travel. It is really good that your mastocytosis is cutaneous only and not systemic.

[poshpen]

mine is only cutaneous too and I also have Epipens. I got a letter from Doctor for travelling on planes but have never been asked for it or questioned on the pens in my carry on luggage . Looks like you’ve had the full works of tests which is great. What is your tryptase level if you don’t mind sharing the info? If not then no probs just interested as similar to me

[amadamico in reply to poshpen]

Thanks for your reply. My level was 6.6 which they say is within the normal limits.

[poshpen]

you should probably get a medical alert bracelet. My consultant suggested one that just says Mastocytosis-Risk of anaphylaxis on it. My tryptase is 8.5 so again still within Normal limits with low risk but currently have and then will be reviewed in a few years

[amadamico]

yes I’m the same. Pretty normals levels and they will keep me under review. Have ordered an attachment to my Apple Watch strap and will get a silicone one for holidays. Need to tell family, work, gym, holiday insurance etc too. Quite daunting.