Tryptase blood test?: Would he result... - The UK Mastocytos...

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Tryptase blood test?

jenniferBSc profile image
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Would he result of a tryptase blood test be more accurate if H1& H2 blockers and Nalcrom were temporarily stopped? I’m between definition of conditions MCAD & Sjogrens ( lip gland biopsy hopefully soon as neg ANA) no further med options until confirmed diagnosis

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jenniferBSc
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Jess-UKMasto profile image
Jess-UKMastoPartner

Hi Jennifer, those medications are not thought to affect tryptase levels and would normally be continued for testing. There have been a few studies that have found that Nalcrom does not decrease tryptase levels. H1 and H2 blockers work further downstream, on preventing the histamine that's already been released from affecting other cells in the body. Other tests that would help confirm a diagnosis would be urine tests for the breakdown products of histamine and prostaglandin D2. What you're taking are definitely part of the regular approach to treating MCAS and a diagnosis doesn't necessarily mean a bigger arsenal for treatment, unfortunately.

jenniferBSc profile image
jenniferBSc in reply toJess-UKMasto

Thanks so much Jess for your prompt and very informative reply. Definition is difficult with such overlaps between conditions and likewise specialties, but are nonetheless crucial to treatment options beyond the standard meds when they no longer seem to be quite as effective. It’s particularly difficult when the NHS is so challenged, but I truly believe those that are suffering with long Covid have MCAS in some form, maybe when all data on the other side of the pandemic is peer reviewed, it will result in informed conditions for us all and acceptance of how common these conditions actually are. Thanks for everything you do your support is immeasurable to many.

Jess-UKMasto profile image
Jess-UKMastoPartner in reply tojenniferBSc

Thanks, Jennifer! I didn't mean to suggest that it isn't valued to be diagnosed, but I also wanted to be clear that even with diagnosis it is still a manner of using a fairly limited set of tools, some of which you're already employing. I think you're right that some folks with Long COVID are having mast cells riled up. It will be really, really interesting to see how things unfold as more research is done and we understand more! Glad to try to help.

jenniferBSc profile image
jenniferBSc in reply toJess-UKMasto

Typo* informed decisions

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