Mast Cell Activation Syndrome

[Mushnikk]

Only eye drops are available in Turkey unfortunately, I wonder is the eye drop solution able to circulate in the blood? or does it only affect the eye?

This apparently varies widely by country. Here in Germany I can get cromolyn over the counter without an prescription. Perhaps you have a relative or friend who travels that get buy for you at some point?

You can get it in what form? is the oral form also over the counter?

I meant the oral form. Allergoval is the brand name. And quite inexpensive, too. 50 capsules (100mg per capsule) are about 25 euros.

[demografx]

...I still have a full head of hair and an active sex drive 

I’m jealous! Not about the sex drive but the full head of hair!

[Mushnikk]

I am sorry Drop. It is not a paper, but a topic from a member who has got results. I was confused by another paper, I think about TRT.

https://poiscenter.com/forums/index.php?board=7.0

My excellent doctor found a POIS study using Cromolyn on Pubmed. He said it was only 4 patients and the drug helped only half of them. He prescribed Nalcrom to me to try for a month. I had to have the pharmacy order it because it's not commonly used in Canada. I'll have it in the next day or two to try out and I'll report back. It's very expensive too but luckily my insurance covered it. A 4 week supply was over $400.

Which study are we talking about?

[Vandemolen]

My excellent doctor found a POIS study using Cromolyn on Pubmed. He said it was only 4 patients and the drug helped only half of them. He prescribed Nalcrom to me to try for a month. I had to have the pharmacy order it because it's not commonly used in Canada. I'll have it in the next day or two to try out and I'll report back. It's very expensive too but luckily my insurance covered it. A 4 week supply was over $400.

Ok great. I read that it could take up to 3 weeks before it works. I hope it will help you.

[hurray]

I meant the oral form. Allergoval is the brand name. And quite inexpensive, too. 50 capsules (100mg per capsule) are about 25 euros.

Very useful information Mushnikk. It seems to be far cheaper in Germany than in the US. A quick Google for "Allergoval" showed several cheap suppliers.

[hurray]

...I still have a full head of hair and an active sex drive 

I’m jealous! Not about the sex drive but the full head of hair!

It's a lot whiter than it used to be 

[demografx]

[Nas]

I meant the oral form. Allergoval is the brand name. And quite inexpensive, too. 50 capsules (100mg per capsule) are about 25 euros.

dude, that is way cheaper than in some countries.
25 euros is very reasonable for 50 capsules.

[Mushnikk]

I meant the oral form. Allergoval is the brand name. And quite inexpensive, too. 50 capsules (100mg per capsule) are about 25 euros.

Very useful information Mushnikk. It seems to be far cheaper in Germany than in the US. A quick Google for "Allergoval" showed several cheap suppliers.

But so is about every drug when compared to the US, because of their deregulated market.

[drop247]

I've started taking the sodium cromolyn. I was surprised to find the effect feels somewhat similar to niacin. I have a warm sunburnt feeling on my upper back which I assume is a flush. It's not as intense as Niacin though. From my reading nobody really knows why it works as a mast cell stabilizer. I have used high doses of niacin in the past to cause a large flush before an O which I assume works because the mast cells are pre-activated and drained. I'm wondering if taking sodium cromolyn daily does the same thing and just keeps the mast cells empty? Any thoughts? I'm unable to take the full dosage since it makes me feel a bit woozy but I will try to work up to full daily dosage.

[Nas]

I've started taking the sodium cromolyn. I was surprised to find the effect feels somewhat similar to niacin. I have a warm sunburnt feeling on my upper back which I assume is a flush. It's not as intense as Niacin though. From my reading nobody really knows why it works as a mast cell stabilizer. I have used high doses of niacin in the past to cause a large flush before an O which I assume works because the mast cells are pre-activated and drained. I'm wondering if taking sodium cromolyn daily does the same thing and just keeps the mast cells empty? Any thoughts? I'm unable to take the full dosage since it makes me feel a bit woozy but I will try to work up to full daily dosage.

I'm so happy that it works for you!!!
Are you taking the oral form of the inhaler form?

[drop247]

It's the 100mg capsules. I was prescribed 2x100mg capsules 4 times a day. I can't say it works for me yet. I haven't even tried having an O. And frankly if these side effects persist I won't be able to continue taking this drug.

[Muon]

Intestinal Mucosal Mast Cells: Key Modulators of Barrier Function and Homeostasis

[Mushnikk]

Intestinal Mucosal Mast Cells: Key Modulators of Barrier Function and Homeostasis

I've always thought that my preexsting gut problems are the cause of my lately developed POIS symptoms. It's also listed to as the most common comorbidity in poll on the forum according to which 2/3 have irritable bowl syndrom.

[Muon]

"SIBO with hydrogen and methane plateau patterns are common in MCAS subjects. MCAS could cause SIBO due to alterations of the GI immune system or altered motility by local release of MC mediators. Antibiotic therapy appears to improve GI symptoms in MCAS patients."

Small Intestinal Bacterial Overgrowth Is Common in Mast Cell Activation Syndrome

[Muon]

Pharmacological treatment options for mast cell activation disease

[Hopeoneday]

Intresting article for non clonal mcas
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3545645/

You can see how diagnosis is hard... bone marow biopsy... if...

Under treatmant , tabele one.

You can se that treatmant should be from 6-7 angles.
From histamine 1-2 blockers to mcas stabilizers, antileukotrines....

[Muon]

HOD check table 13 from the paper I posted prior to your post. They are targeting all sorts of receptors there or giving potential options for meds that bind to mediators.

Anyway, I have posted this before but here it is again, it stretches the criteria somewhat:

This paper proposes the following diagnostic criteria for MCAS, table 2:

Often seen, rarely recognized: mast cell activation disease - a guide to diagnosis and therapeutic options

1) Major criteria 1 + Major critera 2

Or 2) Major criteria 2 + at least one minor criterion

[Hopeoneday]

Yes Muon.
Did you noticed connections with POTS and MCAS in studies we mentioned lately,
it says -POTS linked to vasoactive amines linked to histamine.

[Muon]

Yes Muon.
Did you noticed connections with POTS and MCAS in studies we mentioned lately,
it says -POTS linked to vasoactive amines linked to histamine.

I did notice it in 2015. I have put many mast cell associated conditions into this poll:
https://poiscenter.com/forums/index.php?topic=3188.0