Have there been any studies in to tryptase level increases over the lifetime of patients?

[MastoMan]

Should patients expect their levels to increase X percentage per year?

[Kay-UKMasto Ambassador]

I don't know of any studies and would also like to know if there are any. I just know that my own levels have gone up and then down again over time (always over 100ng/ml but at times over 150), with no apparent correlation with my symptoms.

[Jess-UKMasto Partner]

Interesting question! I can look into it to see what has been written. At this year's meeting of the European Competence Network on Mastocytosis (ECNM) there was discussion of tryptase levels tailing off a bit in older age in some patients. In general, we are wary when tryptase levels accelerate upwards quickly, which is why it's good to have one taken annually at least, if you have SM (and perhaps more often if things aren't great) to see what the slope of the line is if you graph them. My personal experience is that mine have actually dropped since around when I turned 40. (I was diagnosed at 20-ish.) Mine were well over 100 in my 20s and 30s and then have been under. I wondered, in a discussion with a researcher who works on tryptase, as to whether this could be related to ageing and (as I'm female) whether it could be related to changes in the uterus, which is rich in mast cells. Not relevant for you.

As Kay say, tryptase levels are often not correlated with symptoms. But if they rise rapidly between visits we should be looking for other signs to assess whether there are other signs of progression of the disease.

[Jess-UKMasto Partner in reply to Jess-UKMasto]

Here's one study that looked at tryptase levels in people with allergy but not mastocytosis over time, and found that in those patients it got higher as they aged. I wonder if that's true in the general population without any mast cell related diagnosis.

pubmed.ncbi.nlm.nih.gov/221...