Author Topic: Cromolyn Sodium is expensive. Worth it?  (Read 243 times)

Clues

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Cromolyn Sodium is expensive. Worth it?
« on: September 28, 2020, 07:23:38 AM »
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!
« Last Edit: September 28, 2020, 07:37:51 AM by Clues »
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Muon

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Re: Cromolyn Sodium is expensive. Worth it?
« Reply #1 on: September 28, 2020, 07:32:51 AM »
It has to be applied for at least 4 weeks, daily. Is this an oral form?

Clues

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Re: Cromolyn Sodium is expensive. Worth it?
« Reply #2 on: September 28, 2020, 07:43:05 AM »
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?
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Muon

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Re: Cromolyn Sodium is expensive. Worth it?
« Reply #3 on: September 28, 2020, 08:08:17 AM »
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.
« Last Edit: September 28, 2020, 08:20:57 AM by Muon »

Clues

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Re: Cromolyn Sodium is expensive. Worth it?
« Reply #4 on: September 28, 2020, 08:09:29 AM »
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.
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Clues

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Re: Cromolyn Sodium is expensive. Worth it?
« Reply #5 on: September 28, 2020, 08:11:46 AM »
For dose, see docx file in ref

Thanks!
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Muon

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Re: Cromolyn Sodium is expensive. Worth it?
« Reply #6 on: September 28, 2020, 08:16:30 AM »
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/
« Last Edit: September 28, 2020, 08:18:42 AM by Muon »

Nas

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Re: Cromolyn Sodium is expensive. Worth it?
« Reply #7 on: September 29, 2020, 04:47:32 PM »
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

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Re: Cromolyn Sodium is expensive. Worth it?
« Reply #8 on: September 30, 2020, 12:35:26 AM »
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.
« Last Edit: September 30, 2020, 01:02:13 AM by Clues »
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hurray

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Re: Cromolyn Sodium is expensive. Worth it?
« Reply #9 on: September 30, 2020, 08:47:26 AM »
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?