This is just a hunch but for those of you adults with Ulticaria Pigmentosa, do you recall being stung (wasps, bee, jellyfish) around the time it started. I know we don’t really know the causes yet, but looking back, I remember being stung by a jellyfish in Malaysia and feeling tingles and raised heart rate for a number of weeks afterwards (in my mid twenties). It’s most likely just a coincidence but I do wonder whether nerve damage or the increased production of antihistamine could have triggered a mutation or anomaly..
Seems likely to me that a sudden appearance in adults must be triggered by something...
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Jazzsinger77
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I really don't have an answer to your question but I do recall having some bad (but not anaphylactic) reactions to bee or wasp stings, other insect bites, jellyfish stings and contact with sea urchin spines but mostly over a long period of time and way before I had any symptoms of urticaria pigmentosa. I lived with the UP for some years without knowing what it was and only actually sought a medical opinion when I developed systemic symptoms and those immediately followed a course of antibiotics and I hadn't had any stings or bites for ages. Maybe someone else will have an opinion.
That is interesting though Kay. Did you spend a lot of time in the water or go travelling? Not everyone in the UK gets stung by bees, jellyfish and sea urchin spines?! Sounds quite unusual...
Are you aware of how common the systemic form is? Can’t find any definite stats on this...
I have mostly been swimming in tropical waters (as I have a particular interest in coral reef fish) over many years and have also been in quite a lot of jungly places too (looking at wildlife). I used to find that the first time a particular type of insect bit me in a particular country or region then I would react badly but in many cases the reaction the second or third time would gradually get less. I'm not sure if that applied for marine "stingers" as I didn't get stung all that often (thank goodness) - the worst was a Portuguese man-of-war, off West Africa - incredibly painful though thankfully not for too long.
I was told when I was diagnosed with systemic mastocytosis that I would probably become allergic to bee and wasp stings so I carry two Epi-pens at all times - thankfully I haven't been stung since.
In terms of how commonly people with urticaria pigmentosa progress to systemic mastocytosis I am not quite sure but feel confident that Jess is likely to know.
Interesting ...... i have always thought that something must have been the trigger for my UP which started in my mid 30s . I recall a family holiday to Minorca at around the same time when I was stung by a swarm of jellyfish. It was nasty . I hadn’t thought about a possible connection before .
That is interesting Gardenrose23 and thanks for sharing. So far that’s three people with similar experiences of being stung. Far too small a number to say anything conclusive obviously, but I’m going to keep on exploring this further. My novice theory here would be that the jelly fish sting may have caused the mutation in the mast cell receptors. Perhaps, the toxins caused by the sting caused an overload of antihistamine. The body then reacted to the threat by overproducing mast cells..... Just an idea..
This is an interesting question. As you say, we don't yet know of a link. I was already having other symptoms (GI) when my UP appeared. My UP appeared not long after a UTI that wasn't treated and resolved on its own, so I've wondered about that. No stings that I remember, in my case.
Meant to add, that it could be possible that we have a bigger reaction to the sting so we notice our UP when it's riled up? Just wondering whether the UP was there and the sting made it more noticeable rather than triggering the creation of the UP. But of course it's not easy to figure that out!!
I was always sensitive to water if I stayed too long like in swimming pools . No one paid much attention to it. My parents did not even discuss it or take me to any doctor as they thought it might be something in the water . it would go away when my skin was dry. When I was pregnant I though it would be a good idea to have a warm bath and I came out with hives all over my body I was at an conference in a foreign country did not have antiallergy tablets as this had never happened before. It was late in the night and I just waited an hour before it when away. The incident left brown spots and that was the start . Through the rest of the pregnancy I would get hives few times. I always though it was pregnancy related but then it never left me. That one night of warm bath triggered and now I have hives every evening
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