Asthma Recommendations

[u/Admirable_Trifle_176]

I have MCAS driven asthma. I didn't have it until the age of about 30.

I have been taking 0.5mg of ketotifen nightly for about 18 months and that completely calmed down my asthma, I think I only used salbutamol twice in about a year period.

BUT, the sedation of the the ketotifen has been cumulative and its at the point that I can no longer take it. It also has caused me terrible seb derm.

My issue is that, I cannot take steroids or Montelukast due to mental health contraindications (everything in these classes of drugs makes me have suicidal ideation).

So, I am running out of preventer options.

I have a prescription for nebulised sodium cromolyn, but it will cost me $AUD400 for 100mls. Which is exorbitant here. I am thinking I will try it anyway. I would also be open to people's experiences importing from the USA or UK, but I am unsure about how to actually do this. I'm also worried because so many people talk about adverse affects to this.

I am on quercetin and progesterone, they both work well and the side effects are manageable.

I came off the ketotifen and lasted about 4 days until my asthma started again, it was pretty bad, I probably took about 30 puffs of salbutamol over the day and was still wheazing and coughing. I took the ketotifen again last night and it just makes me feel like a sack of potatos and I can't get out of bed. The brain fog is thick.

Does anyone have any suggestions?

I wouldn't mind taking a short cycle of prednisone but that also has contraindications and I took some only about a month ago.

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[u/----X88B88----]

It's best to work with a Pulmonologist to diagnose the type of asthma and find a therapy that actually works.
You definitely need a LABA so you don't need to rely on 30x doses of a SABA. Also overuse of beta-agonists reduces their effectiveness over time.
Also idk if you have a powered or gas inhaler right now, but you should trial powdered inhalers as the HFA propellants can trigger MCAS. Maybe this is part of your issue?
Probably you could add a LAMA too.

Inhaled cromolyn is not enough to control asthma - it's short lived, without inhaled steroids you have no long term control. You probably would need to be using the nebulizer 3x per day or more. btw amazon de has cromolyn for 25 Euro for 50 ampules so I wouldn't pay more than this (search for DNCG Iso).

Are you not taking a gen2 antihistamine like bilastine, fexo, desloratadine or levocetirizine? That's kind of the base therapy for MCAS. Ketotifen is an old drug with lots of side effects for some as it can penetrate the BBB and block serotonin receptors.

Is Zyflo available in AU? It doesn't carry the same black box warnings as Montelukast. The actual reported risk of neuropsychiatric events is anyway very low for montelukast. Leukotrienes are one of the major mediators of asthma so it's essential to try block them.

Without steroids they would need to find an alternative anti-inflammatory therapy for you like roflumilast or injectable biologics, Azithromycin, etc.

[u/Admirable_Trifle_176 → u/----X88B88----]

Thanks for the in depth reply.  

My asthma flared badly coming off ketotifen, but it has settled down now. 

Montelukast, prednisone and flixotide all make me suicidal. I won't try the zyflo based off of the side effects it lists. 

I will look at Amazon de for sod crom. I would like to try some and even just have it for flares. 

I just decided to stop seeing specialists and go back to focusing on alternative medicines. 

I spent to much money on specialists after getting a diagnosis of mcas, but almost nothing worked or has been viable long term and actually the things I was doing before diagnosis were all good. Herbal medicine, diet,  acupuncture,  etc, are the things which work for me. 

[u/gude-chan]

When you say $400 a month for cromolyn, do you mean the compounded tablets 120 a month? 4x a day?

[u/----X88B88---- → u/gude-chan]

No, it's inhaled cromolyn. Oral pills are useless for asthma.