Cromolyn Sodium is expensive. Worth it?

[Clues]

Hi all.

As some of you may have seen elsewhere, I suspect my POIS is caused by some kind of mast cell activation disorder, and I'm being diagnosed by an endocrinologist at the moment.

My tryptase level was normal and there was no unusual mast cell activity in my skin biopsy. To my horror I found out today that my doctor thought I meant Mastocytosis when I mentioned MCAS to him before, and it turns out he hasn't even heard of MCAS. MCAS has similar symptoms to Mastocytosis but has no reliable biomarkers.

Thankfully he's willing to entertain the idea of untimely mast cell activation without biomarkers. To test this hypothesis he prescribed Lomudal oral, which AFAIK is similar or identical to Cromolyn Sodium oral, which has been discussed on the forum here and there.

So what sucks is that apparently I can't get it reimbursed as it's not an officially recognised medication here in Norway. And it's quite expensive: 2100 NOK for 100 x 10 ml. I got the impression that I may be able to get future purchases reimbursed if we can prove that it's working for me.

To those who have tried Cromolyn Sodium: How well did it work for you? And did you have to take it regularly, or did you take it only when symptomatic? (My doc suggested the latter.)

Thanks for reading!

[Muon]

It has to be applied for at least 4 weeks, daily. Is this an oral form?

[Clues]

It has to be applied for at least 4 weeks, daily. Is this an oral form?

Yes, it's oral.

My endocrinologist claimed that if it's mast cell activation that's resulting in my symptoms, then taking Cromolyn Sodium oral when symptomatic would clear up the symptoms. But then he didn't even know what MCAS is, so I certainly don't trust him to have correct or up-to-date information on this.

Muon, do you know of any research paper with suggestions on how to use Cromolyn Sodium in an MCAS context?

[Muon]

For dose, see docx file in ref (inside quote):

The oral form is used for food sensitivities/triggers. Dosage: 100 - 200 mg, two to four times a day 30 min before a meal. This has to be build up slowly (don't start with minimal dose but build up towards it and go from there) and need to be taken for at least 4 weeks. The minimal dosage is 100 mg*2 = 200 mg/day. Max dosage would be 200 mg*4 = 800 mg/day.

Nebulized form for nasal/sinus problems: 20 mg, two to four times a day. Ref

Duration of MCA(S) therapy in general:
"The tolerability and efficacy of most therapies tried in MCAD (starting, and escalating in dosage and composition, cautiously) become clinically evident within 1-2 months." Ref 2

Cromolyn:
Target location;mechanisms of action
GPR35; modulation of chloride current.

Cromolyn can cause flares at the start of therapy but they should reside after a while.

[Clues]

Quick update: Talked to my doc and he will apply for the health authorities to cover the cost. He wasn't super optimistic about our case. Hopefully I'll get to try it out.

[Clues]

For dose, see docx file in ref

Thanks!

[Muon]

I heard Dr. Theoharides mentioning in a podcast somewhere that he first tries 3 different anti-histamines before proceeding to the next type of medication. For example in the order from top to bottom:

Gives an anti-histamine from #1 for a few months. Isn't working? Go ahead with an anti-histamine from #2 for a few months etc:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7003574/table/T9/

[Nas]

It has to be applied for at least 4 weeks, daily. Is this an oral form?

Yes, it's oral.

My endocrinologist claimed that if it's mast cell activation that's resulting in my symptoms, then taking Cromolyn Sodium oral when symptomatic would clear up the symptoms. But then he didn't even know what MCAS is, so I certainly don't trust him to have correct or up-to-date information on this.

Muon, do you know of any research paper with suggestions on how to use Cromolyn Sodium in an MCAS context?

Also Oral Chromolyn sodium is mainly for the stomach symptoms and will not pass to the blood making it useless for other symptoms.

[Clues]

Also Oral Chromolyn sodium is mainly for the stomach symptoms and will not pass to the blood making it useless for other symptoms.

User Itsmel on the forum reported a complete remission of brain fog while on Cromolyn though. Maybe his gastrointestinal symptoms were indirectly causing brain fog?

On a separate note, I'm so disappointed with this endocrinologist. It's a struggle to get him to do the tiniest amount of homework. He's prescribing a drug seemingly without having a clue how it's actually used in an MCAD context. I think I need to continue the search for a local doctor with reasonably up-to-date knowledge on MCAD, but I'm not super hopeful such a doctor exists in Norway.

I guess an alternative would be finding a general practitioner with enough empathy and interest to do the homework.

[hurray]

Also Oral Chromolyn sodium is mainly for the stomach symptoms and will not pass to the blood making it useless for other symptoms.

User Itsmel on the forum reported a complete remission of brain fog while on Cromolyn though. Maybe his gastrointestinal symptoms were indirectly causing brain fog?

On a separate note, I'm so disappointed with this endocrinologist. It's a struggle to get him to do the tiniest amount of homework. He's prescribing a drug seemingly without having a clue how it's actually used in an MCAD context. I think I need to continue the search for a local doctor with reasonably up-to-date knowledge on MCAD, but I'm not super hopeful such a doctor exists in Norway.

I guess an alternative would be finding a general practitioner with enough empathy and interest to do the homework.

Itsmel reported his complete remission on February 9th, but he hasn't posted since February 22nd. I wonder why?

[berlin1984]

Hi,

What's your take on this medicine now?

And it's quite expensive: 2100 NOK for 100 x 10 ml.

Not sure about the 10ml thing, but you can get 100 x 91mg for 45 EUR in Germany
https://www.medizinfuchs.de/preisvergleich/allergoval-100-st-koehler-pharma-gmbh-pzn-1240284.html
(which would be 461 NOK)
Can you import medicine from .de into .no without issues?

How well did it work for you? And did you have to take it regularly, or did you take it only when symptomatic?

From what I read around on the internets, you need to take it consistently over the day (4x, dosage depends on person), away from food (e.g. more than 30 minutes before and more than 2h after eating, ideally also when waking up and before going to bed?)
Also improvements will only show up over time (days/weeks).


What I also found interesting is this about quercetin being more effective than chromolyn
https://cogenceimmunology.com/clinical-pearls-quercetin/

[berlin1984]

Itsmel reported his complete remission on February 9th, but he hasn't posted since February 22nd. I wonder why?

=> in other thread:

Itsmel, do you still have good results with Cromolyn?

Yeah it's still working. The oral cromolyn has the biggest impact so far as other medications tried.

[Muon]

Not sure about the 10ml thing, but you can get 100 x 91mg for 45 EUR in Germany
https://www.medizinfuchs.de/preisvergleich/allergoval-100-st-koehler-pharma-gmbh-pzn-1240284.html
(which would be 461 NOK)
Can you import medicine from .de into .no without issues?

I have ordered allergoval just recently here: https://www.arzneiprivat.de/product/allergoval-kapseln.55111.html
I was looking for a powder which you could dissolve into water and create a gel solution but could not find it anywhere (wanting a solution that penetrates the GI tract as deep as possible). That stuff is prescription only in The Netherlands and I don't have a diagnosis, so I'm left with the capsules.

[Clues]

Berlin and Muon, thanks for the info. I've personally abandoned the idea of testing Cromolyn for now, for two reasons:

• Norway is very restrictive with meds that aren't approved for normal prescription. AFAIK it's illegal to order them online (not 100% sure about this though) and it seems next-to-impossible for a doctor to receive an exemption and be allowed to prescribe them in the case of a diffuse and poorly-understood illness like mine. (MCAS research has not been absorbed into the public health system in Norway at all unfortunately.) Plus, even if I do get an exemption, the cost is prohibitive here.
• I've seen mixed reports on results in MCAS patients. Might work for me, might not. However, I'm seeing real improvements with what I feel are fairly likely paths towards permanent healing for me. Basically, fixing my gut via diet and natural supplements, and speculative mercury detox, currently via chlorella. So pursuing temporary symptom relief seems like a less optimal use of my time right now.

Still, I'm very interested to hear more people's experiences with Cromolyn.

[berlin1984]

I have ordered allergoval just recently h
...
I was looking for a powder which you could dissolve into water and create a gel solution but could not find it anywhere (wanting a solution that penetrates the GI tract as deep as possible). That stuff is prescription only in The Netherlands and I don't have a diagnosis, so I'm left with the capsules.

Actually the instruction leaflet says you should take the pill 15-30 minutes before eating with a bit of water
BUT they recommend for food allergies you should disolve the capsule contents in 2-3 table spoons of hot water and take it that way.

I got the stuff since yesterday, so far I only tried taking it as pill.
So since we don't have food allergy, we should take it as pill instead?

Don't you think if you disolve it, it might instead be absorbed by the upper intestines instead of "as deep as possible"?

The other contents are: "Gelatine, Magnesiumstearat, Siliciumdioxid, Titandioxid". Where does the capsule disolve with those ingredients?

Maybe something to investigate (e.g. via mastcell reddit or google) instead of assuming.
Or just try it and let me know :-)

(PS: My main reason I bought it is because it makes sense for general non-POIS face flushing (mostly in afternoons) which i seem to have since some weeks now... and I used to have it several times before and it magically fixed itself.. no idea why. I also bought some Quercetin+C+Bromealin+Rutin. If it can fix that problem and POIS, I'd be happy)

[Muon]

The powder/gel form is meant to lubricate as much surface area of the GI tract as possible for food reactions yes. I don't expect anything from the stuff though, but it's on my list for a while now and saw it recently being available in Germany for my country. I will experiment with both anyway, the capsule alone and dissolve it into water if I'm able to open it up.   

[berlin1984]

if I'm able to open it up.

As I said, in the leaflet it is explicitely recommended that you can open it up.

(I sometimes do this to get uridine sublingual instead of taking the capsule, can save quite some money...)

[Journey]

Yet another person whose POIS has been improved with a mast cell inhibitor which in this case is a liquid from of the Cromolyn a.k.a. the Cromolynic acid

https://www.reddit.com/r/POIS/comments/n3ciys/what_should_i_do/gwrfk1o?utm_source=share&utm_medium=web2x&context=3

[berlin1984]

I'm also taking it (two capsules in morning = 200 mg Natriumcromoglicat) in morning on empty stomach for many weeks now. Maybe it's too little. Can you ask the person on Reddit what his dosage is? And what other things he does?

Might help a bit with flushed face in afternoons, but I don't think it changes much for POIS.

I'm more in the chronic infections / gut bacteria corner of POIS I guess, less in the mast cell corner (if those corners even exist... but orgasms and body is so complex, there is many angles to tackle. I still think one needs a combination of pre-pack, post-pack, chronic things to take, chronic life style changes to make)

[Muon]

Not worth it for me after 2 months of use, 4x200mg/day, allergoval capsules (solid state granules).