Problems with Mast Cell stabilizers

hb8847

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So I'm at my wit's end a bit this evening. I'm currently on a plan from my MCAS doctor to take Mast Cell stabilisers in the hope it calms my symptoms, but I've just tried a new one (Ketotifen) and I'm reacting badly to it, and I'm wondering what to do.

The background to this is that initially I started on some H1 and H2 antihistamines (Loratidine and Famotidine) a few months ago; these didn't seem to help much but the doctor was at least encouraged I didn't seem to be reacting badly to them

Then my next appointment rolls around about a fortnight ago and he starts me on Ketotifen (the original plan was to go with Sodium Cromolyn but some of his patients have been struggling to get hold of it in the UK, so he chose Ketotifen). And it hasn't been going great. All my symptoms seem to be exacerbated, and I'm pretty sure it's the Ketotifen because I've been taking it away from my other meds and notice a reaction almost immediately.

To be clear, my MCAS symptoms are mainly ME/CFS related - extreme tiredness, aching joints, cognitive stuff, gastrointestinal issues. And my reactions solely come from things I ingest (ie, food or medications). And I was already practically bedbound but since taking Ketotifen my fatigue seems to have even gone up a notch; I now have some food and I basically spend the rest of the day in a daze and on the brink of passing out, it's not been fun.

I've reached out to the doctor to see what he advises. Obviously I can't continue with the Ketotifen. I'm wondering at what point I start thinking about taking matters into my own hands regarding the stabiliser medications - I know I can source most of them abroad at minimal cost and can try them myself if absolutely necessary. That said, I'm keen to follow the professional advise as much as possible as I reckon that probably gives me the best chance at recovery.

My gut feeling for now is to stick to the doctor and see what he says, and hopefully he'll prescribe me something else to try. His plan so far has been to wait 2 months with each medication as some of them take some time before working, but I'm not sure I'm willing to wait another 2 months just to try another.

If I don't get a satisfactory response maybe I'll try reaching out to some different MCAS doctors to see what they say, although they aren't exactly in abundance over here in the UK.

I'm wondering what peoples' thoughts are on this, particularly about sourcing these meds abroad and giving them a go myself. Does anyone have experience of this? Is there a recognised order about which medications to give a go to?

Also does anyone have similar symptoms to me and what did you do? Which stabiliser medications ended up helping, if any, and to what extent? Did your doctor follow a similar schedule to mine?

Thanks
 
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hb8847

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Yes Ketotifen has done that to me too. Extreme tiredness is one of my usual MCAS symptoms so I'm wondering how much of it is a Mast Cell reaction and how much is just the fact that one of the Ketotifen side effects is tiredness... either way it's not been great.
 

Judee

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This page mentions some mast cell doctors: https://www.mastcellaction.org/about-mcas

Are these the ones you're working with already?

Also, I think this is a US site but maybe there would be something helpful: https://www.aaaai.org/conditions-treatments/related-conditions/mcas

One more from my search engine: https://www.gibiru.com/results.html...360965567042:8627692578&cof=FORID:11&ie=UTF-8

These are probably not new to you but just thought I'd post in case. Hope you can find someone to help. :(
 

hb8847

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This page mentions some mast cell doctors: https://www.mastcellaction.org/about-mcas

Are these the ones you're working with already?

Also, I think this is a US site but maybe there would be something helpful: https://www.aaaai.org/conditions-treatments/related-conditions/mcas

One more from my search engine: https://www.gibiru.com/results.html?q=mcas+mast+cell&rt=&cx=partner-pub-5956360965567042:8627692578&cof=FORID:11&ie=UTF-8

These are probably not new to you but just thought I'd post in case. Hope you can find someone to help. :(
Thanks @Judee

Yes I contacted Mast Cell Action UK a while ago, they were very helpful and gave me a list of MCAS doctors based here, my doctor was included in that. I actually reached out to a few others as I was thinking about getting a second opinion on everything but quite a few of them ended up saying they didn't specialise in MCAS, or they deferred to my current doctor, so I think I'm probably stuck with this guy for the time being. I'm sure he's good, he's just a bit abrasive and seems quite wedded to this idea of taking it all incredibly slowly and only adding a new stabiliser once every 2 months.

Thanks for the other links you gave, I'll check them out.
 

Judee

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I had one other idea: Grapefruit - based on what Andy Cutler says here: https://livingnetwork.co.za/chelationnetwork/food/liver-detox-pathways/

I have MCS (multiple chemical sensitivities) so slightly different conditions but I wonder if this would work for you as well.

Plus, I have a citrus allergy - lemon, limes, oranges (I can handle lemons once in a while or in tiny amounts) but I am okay with grapefruit and it actually makes me feel better. I'm guessing that it's balancing out my liver detox issues as he said.

Anyway, that page has more info. (He also recommends quercetin but that doesn't seem to work for me.)
 

hb8847

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Thanks, but literally every food I ingest gives me a reaction, I've tried almost everything in the supermarket. Supplements too. If there's a solution to my problem, it's going to come in the form of medication.
 

MCASMike

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Thanks, but literally every food I ingest gives me a reaction, I've tried almost everything in the supermarket. Supplements too. If there's a solution to my problem, it's going to come in the form of medication.
Have you taken the test to see if you are stomach acid deficient?
 

hb8847

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I have yes, and I am, which perhaps isn't surprising as I have SIBO and gut dysbiosis. I've taken pepsin and betaine acid supplements but they didn't help with the reactions. Regarding the food, or ways of eating it, I think I've tried everything over the years; liquifying it, blending it, every single food and diet imaginable, you name it. The only thing that doesn't trigger a reaction is water and salt but unfortunately you can't survive on that for more than a few days at a time.
 

Judee

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I cannot get sodium cromolyn in India. I would like to try it.
Can you get the herb Khella there? That what the inventor made Cromoglicic Acid (Cromolyn) from.

https://en.wikipedia.org/wiki/Cromoglicic_acid

I know they sell tinctures here in the US

https://www.amazon.com/Herb-Pharm-K...child=1&keywords=khella&qid=1629414003&sr=8-4

and I just noticed an essential oil as well.

https://www.amazon.com/Hemani-Khell...=khella&qid=1629413828&sr=8-6#customerReviews

Anyway, just some ideas.
 
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Just tried this again yesterday, unfortunately it didn't go well. If anything it seemed to exacerbate my reactions to food, bizarrely.

MCAS is weird.
I am very sorry to hear this :(
Last recommandation ever tried OPC? (Oligomere Proanthocyanidine)
 

hb8847

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@DrUniverse I haven't no, thanks for the suggestion though I might give it a go. My next Dr appt is coming up in about 2 weeks where I think he'll be prescribing me some Sodium Cromolyn, so fingers crossed for that one.
 

hb8847

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I tried ketotifen 1 mg and it made me extremely tired. So I tried 0.5 mg and still it caused tiredness. So I stopped. I cannot get sodium cromolyn in India. I would like to try it.
FYI I just bought some Sodium Cromolyn from an online pharmacy called "Goldpharma.cn", it's one of the reputable ones listed on the Online Pharmacy thread on this site. Came pretty quickly, within about 10 days.
 

hb8847

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Eugh, so just tried the Sodium Cromolyn (nasal spray), and it seems I'm reacting badly to that too.

:(

Bit worried I'm gonna be in that 10% that doesn't get better from this.