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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Over the counter MCAS treatment

seamyb

Senior Member
Messages
560
I'm looking for OTC MCAS treatments to try to see if they have any effect. My doctor has left me in charge but without the prescribing power.

I'm under UK jurisdiction.

H1 blockers are widely available. What about H2? Can't seem to even get pepcid without a prescription.

Mast cell stabilisers - Quercetin gave me a bad reaction before (actually, it also had olive leaf extract), anybody know a possible reason why?

Any other stabilisers which are supplements or herbs etc that work?

Cheers!
 

MCASMike

Senior Member
Messages
126
I think luteolin has helped me, in terms of mast cell stabilizing supplements. Ketotifen eye drops work within a minute, and cromolyn nasal spray is worth considering at least. In the USA, famotidine is OTC for those who need an H2, but it gives me head pressure and I don't have any significant GI issues so there's no reason to use it. As to H1s, I've used loratidine and now cetirizine. I also take a baby aspirin with each meal, then one before bed (that has helped in the past with "head fog"). And I'd be sure to take the RDA of nicotinic acid too.
 
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Strawberry

Senior Member
Messages
2,107
Location
Seattle, WA USA
What about H2? Can't seem to even get pepcid without a prescription.

How odd!!! I’d try kidney. I can’t imagine that couldn’t be shipped there. Here are two brands, see if you can get them. Kidney is loaded with DAO and really helps MCAS crap. Take 30 minutes before a meal.

https://smile.amazon.com/gp/product/B078K8L672/ref=ox_sc_saved_image_6?smid=A2GKY43G255N13&psc=1

https://smile.amazon.com/gp/product/B07CJ2QYNM/ref=ppx_yo_dt_b_asin_title_o00_s00?ie=UTF8&psc=1

Any other stabilisers which are supplements or herbs etc that work?

Off the top of my head, holy basil, and pure monk fruit as a sweetener. I haven’t tried either but I have heard many positive reviews.
 

Judee

Psalm 46:1-3
Messages
4,461
Location
Great Lakes
My Mom used to take B6 and zinc or Nettle and Brigham for a stuffed nose from allergies. I don't know if she had MCAS though.

When we were researching things, I found out that cromolyn is made from an herb called Khella. They do sell it on Amazon in the US as a tincture but unfortunately, I don't see it on the Amazon UK site.

I can't tell you if it works though because we never got around to trying it especially since the cromolyn nasal spray didn't help her much and she couldn't do alcohol in tinctures because of the allergies.
 

hb8847

Senior Member
Messages
432
Location
United Kingdom
H1 blockers are widely available. What about H2? Can't seem to even get pepcid without a prescription.

Yeh H2 seem to be prescription only over here in the UK. I'm currently taking Famotidine and it seems to be helping a bit.

If you're really desperate to try some prescription meds there's this thread which shows which sites are reliable to buy from abroad. I'm actually currently waiting on a delivery from one myself.

I'll also send you a link of something someone forwarded to me about helpful MCAS meds & supplements to try.

For what it's worth Quercetin didn't seem to do much for me.

Is your doctor a specialist in something or just a GP? And are they NHS? It might be worth seeing whether they can refer to you an immunologist or an allergist who is familiar with Mast Cell disorders. If you contact Mast Cell Action they can give you a bunch of names of both private and NHS doctors specialising in MCAS, they were very helpful to me.
 

NotThisGuy

Senior Member
Messages
312
How odd!!! I’d try kidney. I can’t imagine that couldn’t be shipped there. Here are two brands, see if you can get them. Kidney is loaded with DAO and really helps MCAS crap. Take 30 minutes before a meal.

https://smile.amazon.com/gp/product/B078K8L672/ref=ox_sc_saved_image_6?smid=A2GKY43G255N13&psc=1

https://smile.amazon.com/gp/product/B07CJ2QYNM/ref=ppx_yo_dt_b_asin_title_o00_s00?ie=UTF8&psc=1



Off the top of my head, holy basil, and pure monk fruit as a sweetener. I haven’t tried either but I have heard many positive reviews.

I always wonder how safe those dried organs are regarding mcas and histamine. Arent they also very loaded with histamine?
 

Strawberry

Senior Member
Messages
2,107
Location
Seattle, WA USA
Yeh kidney really didn't help me. The issue with foods is a lot of them that contain helpful stuff like DAO can be triggering for other reasons.

Hearing that makes me think about alpha gal.

Yasmina used to have a protocol that broke the health food reactions cycle, but her website is extremely difficult to navigate.
 

Strawberry

Senior Member
Messages
2,107
Location
Seattle, WA USA
I always wonder how safe those dried organs are regarding mcas and histamine. Arent they also very loaded with histamine?

Probably. Humans used to live off very high histamine foods before refrigeration. Actually humans still do. It’s just our bodies are broken and need fixing. Somehow…..
 

hb8847

Senior Member
Messages
432
Location
United Kingdom
Probably. Humans used to live off very high histamine foods before refrigeration. Actually humans still do. It’s just our bodies are broken and need fixing. Somehow…..

Although before refrigeration we would have eaten the meat a lot quicker, and for meat histamine only really becomes an issue after bacteria have been allowed to proliferate. But yes otherwise I agree - histamine in foods is natural, it's us that are not.
 

MCASMike

Senior Member
Messages
126
Before I even learned of MCAS I started eating honey and about a month later the eye tearing didn't have the strong burning sensation, so that may be worth trying for some MCAS patients.