Cromolyn Aka Gastrocrom For Mcas Or Pots?

[kitt]

My pots neurologist at Mayo in MN recently prescribed liquid Cromolyn, (Brand name is Gastrocrom) for MCAS, common in in people with severe hyperadrenergic pots, (NE between 1000 and 2000).

Wondering if anyone has tried it and what was your experience?

It's been a good thing for me thus far and very easy to take...Squirt it into a small amount of water and it lessens MCAS.

Thanks,

K

[Christy_D]

My son tried it for his MCAS, didn't help...didn't hurt.

[Chaos]

Has been helpful for my GI symptoms.

[blueskies]

Has been helpful for my GI symptoms.

Can I ask in what way, Chaos?

Kitt, I TRIED GASTROCOM over a year ago I think it was. But it really made my migraines worse, as does some other meds including some asthma ones. But I was taking a full capsule and would like to try it again, starting really small dosage and work up to see how I go. It means a trip back to the allergist -sigh- for another script as the gastrocrom/sodium cromoglycate I had went past it's use by date. Grrrrrr.

[kitt]

.

[Psalm 23]

Hi Kitt,

I'm glad you've found Cromolyn to be so helpful for you. I have been on it for three months now along with Allegra and Pepsid and have realized significant improvement in terms of mental clouding, neuropathic pain, some PoTS symtoms, GI symptoms etc. I also implemented an elimination diet and was able to identify a number of problematic trigger foods. I hope you continue to realize improvement with Cromolyn.

Janet

[Goschi]

I am not in the US, the brand Gastrocom isn't available where I live (Austria). I only found an anti-allergic nasal spray that contains Cromolyn. I wonder if this would be as effective. Is Gastrocom a liquid for internal use?

[blueskies]

Hi gosh,

In australia you need a script from your doctor for it and a compound chemist makes it up. I think it used to be available in name brand form here at one point, but not now. Check with your doctor about using the nasal spray if no one else here has tried it, maybe? I have read about it on the net and thought I might see if we have it here and give it a try myself. I imagine it would be a lot cheaper than the capsules the compounding chemist supplies.

Blue

[Goschi]

Hi blue,

thanks for your message - however, we are running into one of the world's most "famous" mistakes! ;-)))

I don't live in Australia, but in Austria!! No kangaroos and koalas here!

I will ask my GP about the nasal spray (the brand name here is "Vividrin"). It only contains liquid Cromolyn, so it should in fact be helpful! (even through the nose! ;-)).

[kitt]

 

Best,

K

http://www.tufts.edu/~ttheoh01/mastcellsinflammation.pdf

[Chaos]

Blue- it's helped with my IBS symptoms. When I had a colonscopy recently they tested the biopsy samples for mast cells and the pathology report came back saying all the samples contained higher than normal numbers of mast cells.

It may be helping with other things as well but I'm on so many different things it's hard to say what's doing what any more.

Kitt- I had my IgE tested 5 years ago when I first became ill and it was very elevated. It was tested last week and it was normal.

[kitt]

Chaos,

Did you read the paper I posted?

My IGE is very elevated. How are you taking Gastrocrome? What form and how often?

[Psalm 23]

kitt I am taking the liquid form of Cromolyn ( generic form of Gastrocrom ) 200 mg four times daily. I take it 30 minutes before each meal and at bedtime. I squeeze two 5ml ( 100mg each ) plastic ampules into 8 oz. water. Following this regime certainly does require a bit of discipline but one adjusts pretty quickly. I carried out an enormous amount of research on this medication as well as MCAD in general before committing to trying Cromolyn. My concern is long term availability. It took three pharmacies to get this prescription filled and every time I get a refill on it the pharmacy that was able to get it ( Walgreens ) has had to find a different distributor.

[kitt]

Janet, Thanks for this information about how often you take it! I really didn't get good instructions during the video visit with my doctor. Walgreens filled mine too, and without a problem. I use Walgreens for all my scripts and have found that if I ask they'll stock anything ahead of time that I'm going to continue to use.

I didn't know that I was supposed to take 2 ampules at a time. That's good to know.

Are you feeling better on it, and in what way?

The doctor Theo Theopolis (wrong spelling) is all over the net with data on mast cells. He has videos too.

Dr Klimas was going to set me up with a phone consult with him for mast cell info but I denied it. That was two years ago, but now I would have taken her up on that. He really is a genius on mast cell research.

Thanks again,

K

[blueskies]

Hi goshi

I realized we were in different countries . I see that mistake all the time, too. What I was trying to say in my brain fogged way is that perhaps in Austria sodium cromoglycate would be available from a compounding Chemist? Just as it is here as long as one has a script from the doctor.

Blue

[blueskies]

Thanks chaos,

For posting about mast cells being tested when you had your colonoscopy done. I had that procedure more than eight years ago when my bowel completely stopped working (no cause was found and I still struggle to keep it moving) but they did not know back then to test for mast cells. There aren't a lot of us, it seems, that have mast cell/histamine problems who experience constipation. From my observations of the reading I've done and what is posted here, it has seemed to Me that most people with these problems have the problem of too much

Motility as opposed to not enough motility. Most of us seem to get plenty of abdominal pain though .

Blue

[Chaos]

Kitt- I have skimmed the paper but didn't have time to read it thoroughly like I want to. Brain fog has been bad so nothing much is making sense these days. I will keep it to read later though. I have seen some of his YouTube videos in the past.

I take the liquid cromolyn and use 1 vial 4x a day. It's prescribed for 2 vials 4x a day but I was too dumb to realize that when I first got the prescription and I did ok with the dose I was taking so I've just stayed with that. When I tried going up, I had more side effects so figured I'd stay with where I was being successful.

I get mine thru our mail order pharmacy so I get 6 months worth at a time.

[kitt]

Thanks Chaos, I mentioned I got mine at Walgreens, and only paid 4.00 for the box. (with insurance)

What kind of side affects did you have? I haven't noticed any.

Am starting Midodrine and that's kind of a weird drug, but no problems with the Gastrochrom.

Best,

K