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Mast Cell Activation Disease (MCAD) Compilation


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This is extremely comprehensive. It would probably take me a lifetime to go through all of it and a lot more to actually understand it all. I've been skimming when I have time over the past week. Interested to see LDN mentioned a couple of times. I've been looking for more ammo to bring to my neuro to get him on board with a trial. Also trying to figure out what kind of testing I want to request (for MCAS among other things). Don't want to overload him with information though. 

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I would only show the table(s) under proposed diagnostic criteria and algorithms to your doctor like this one: 

Current provisional criteria to define mast cell activation syndrome (MCAS; modified from Afrin and Molderings 2014)

The PMC full text link above that table brings you to the paper about treatments. They don't have time to read a paper so show the table instead. Diagnostic mediators can be explored, 11Beta-Prostaglandin F2 Alpha, 24h urine should be on top of your list regarding POTS:

Evidence of Mast Cell Activation Disorder in Postural Tachycardia Syndrome

Tryptase is elevated in 15% of MCAS patients, not very useful (Most doctors are not aware of this fact). Response to inhibitors of mast cell activation is part of the diagnostic criteria for MCAS. Treatment comes down to trial and error where mast cell inhibitors are used daily (for most of them) for at least 4 weeks. There isn't much evidence for LDN as treatment for MCAS/POTS aside from a few case reports. An example of a treatment approach would be like this, start with an antihistamine from #1 for a few months, if that isn't working proceed to #2 and pick one from that class and try it for a few months. Work your way down from top to bottom: Treatment Approach for Mast Cell Mediator Disorders 

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Claire: "Hi sjoh197. I am experiencing the same symptoms. My hands, legs, face and general body turn red and swell up throughout the day. I had all the allergy tests done as well as autoimmune but none of them presented any issues. My rheumatologist has concluded that it is blood capillaries swelling and flushing up to the skin. Did you manage to shed any more light on it since your post?"

Histamine and Bradykinin can cause swelling. PGD2 can cause flushing. 1) Histamine in plasma or its metabolite in 24h urine N-Methylhistamine and 2) PGD2 (its metabolite 11-beta-PG F2 alpha is prefered) in 24h urine or plasma can be tested.

"In mast cell patients, PGD2 is probably most well known for causing flushing. This happens due to dilation of blood vessels in the skin. Due to a well characterized response to aspirin, this is generally the first line medication choice. Some salicylate sensitive mast cell patients undergo aspirin desensitization to be able to use this medication." Ref

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My Allergy and Immunologist dismissed Mast Cell issues for me because my tryptase levels were normal. This looks like so much data. What should I print and hand him for my next 10 minute appointment to see if I can get him to look further?

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3 hours ago, KiminOrlando said:

My Allergy and Immunologist dismissed Mast Cell issues for me because my tryptase levels were normal. This looks like so much data. What should I print and hand him for my next 10 minute appointment to see if I can get him to look further?

You cannot rule out MCAS by a tryptase test which turned out normal. Doctors don't have a clue and they will probably not look into MCAS. Ideally you want to test stuff when being  symptomatic. To answer your question, I would show this one:

Current provisional criteria to define mast cell activation syndrome (MCAS; modified from Afrin and Molderings 2014)

Or Table 2 from this link (basically a small modification of the link above):

Criteria proposed to define mast cell activation disease (for references, see text) when all other diagnoses that could better explain the full range and chronicity of the findings in the case have been excluded.

If you pick one of the above you can add this one to that:

Relative utility of assorted mast cell mediators in diagnosing mast cell activation syndrome (MCAS).

Note that most MCAS patients get diagnosed by major criterion 1 + evidence of above-normal levels of MC mediators. And some by major criterion 1 + minor criterion: symptomatic response to inhibitors of mast cell activation . You can see the flexibility here. A video fragment talking about MCAS criteria: https://youtu.be/lrKqlv6VK_w?t=2485

This is one of the best MCAS videos out there in my opinion. You can watch it yourself:

Dr. Lawrence B. Afrin, MD, Immunology and Allergy: Mast Cell 101

Lastly here is a tip how to unlock articles if you want to do some research yourself, doesn't work always though:

How to bypass paywalls of scientific papers in general:

Copy one of the following:

1) The URL of a website showing a paper (yes the entire http:// webbrowser link).
2) DOI number (shown by abstract/paper or it's oftentimes shown at the end of an URL).
3) Title of paper (less chance paper shows up than method 1 and 2).

And paste it into the search bar of https://sci-hub.se/ or https://sci-hub.tw/

Sometimes you will be prompted to type in a word (bot prevention). And sometimes the site doesn't show the paper but you can still retrieve it by using the save button at the left side. Replace .tw by .se and vice versa in the url if the website doesn't load.

Find the latest papers by using:

https://scholar.google.com

https://www.ncbi.nlm.nih.gov/pubmed/

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On 10/12/2020 at 11:32 AM, Muon said:

I would only show the table(s) under proposed diagnostic criteria and algorithms to your doctor like this one: 

Current provisional criteria to define mast cell activation syndrome (MCAS; modified from Afrin and Molderings 2014)

The PMC full text link above that table brings you to the paper about treatments. They don't have time to read a paper so show the table instead. Diagnostic mediators can be explored, 11Beta-Prostaglandin F2 Alpha, 24h urine should be on top of your list regarding POTS:

Evidence of Mast Cell Activation Disorder in Postural Tachycardia Syndrome

Tryptase is elevated in 15% of MCAS patients, not very useful (Most doctors are not aware of this fact). Response to inhibitors of mast cell activation is part of the diagnostic criteria for MCAS. Treatment comes down to trial and error where mast cell inhibitors are used daily (for most of them) for at least 4 weeks. There isn't much evidence for LDN as treatment for MCAS/POTS aside from a few case reports. An example of a treatment approach would be like this, start with an antihistamine from #1 for a few months, if that isn't working proceed to #2 and pick one from that class and try it for a few months. Work your way down from top to bottom: Treatment Approach for Mast Cell Mediator Disorders 

Thanks for this. I've had him tell me recently (and in the past when I've brought it up) that MCAS presents differently symptomatically to what I've been describing, but I wasn't so sure. He seems to believe MCAS presents only in a way that you can physically see symptoms of swelling and breakout. And since you can't see any physical reaction, it must be something else going on chemically. 

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11 hours ago, MTRJ75 said:

He seems to believe MCAS presents only in a way that you can physically see symptoms of swelling and breakout. And since you can't see any physical reaction, it must be something else going on chemically. 

No, those are just representations which are the easiest to recognize. Mast cells can release other molecules that do not cause swelling. Mast cells release molecules selectively more often than showing exploding degranulating behaviour. They release cytokines/chemokines above anything else but you cannot base a diagnosis on that because those molecules are not specific. 

Here is a video fragment talking about MC mediators @33:44 (Very informative video, one of the best, I highly recommend the full video):

Episode #58: Mast Cell Master with Dr. T.C. Theoharides, PhD, MD

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  • Muon changed the title to Mast Cell Activation Disease (MCAD) Compilation

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