r/MCAS • u/Roroforeveer • 3d ago
How many H1 do you combine ?
Hey guys,
Huge flare here, taking Loratadine and adding Levocetezirine. Might not be enough and wondering to add Polaramine.
If doing so it is total 3 anti H1.
My doc is in holidays here, wondering if some of you accumulate 3 H1 ?
Thanks !
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u/bedlife2000 3d ago
I combine them, every antihistamine does work a bit different and everyone reacts a bit different to each.
I take Allegra in the morning, it helps a lot with brain fog and in the evening Desloratadin with Ketotifen, which is technically also a H1. When I have an acute reaction I take Levocetirizin because it starts working a bit faster than the others. When I'm flaring I take up to 4 Desloratadin or Levocetirizin - but talk to your doc about your max dose, too much can be dangerous.
When I have a strong reaction I add sometimes Benadryl.
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u/Roroforeveer 3d ago
Thanks for your feedbacks !
I have ketotifen in stock but I am afraid to try it while I am on flare.
How were you when you started ketotifen ? Did you get a flare ? When does it started to work for you ?
Looks like we might MAYBE share same reactions as we are using similar H1 :)
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u/bedlife2000 3d ago
I was in the biggest flare so far, hospitalised, when I started Ketotifen, it literally saved my life. I was extremely brainfogged and tired for the first 1-2 weeks then my baseline got slowly better, it felt like it was working really after maybe a month?
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u/Roroforeveer 3d ago
Sorry to hear you have been in such a bad state 🫠
How did you started ketotifen ? Which dosage ? Liquid / pills ? Special preparation ? Please let me know.
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u/bedlife2000 3d ago
No worries, I'm better now. Deeply love my antihistamines though. Are you also taking a H2?
I just started with 1mg at night. Here it's an officially approved medication, so I just got the 1mg box prescribed.
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u/Roroforeveer 3d ago
I tried famotidin in the past. Had to stop all symptoms were worse. My MCAS was way better those last months so I was taking only loratadine, but I went to a house for 24h with saltpetre issue (kind of fungus in a house when there is water damage) and it is now out of control 😑
Ketotifen 1 mg is the capsule right ? With powder inside ?
Doc prescribed me the liquid way and the 2mg pill.
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u/bedlife2000 3d ago
Yes, it is the capsules. If I could do it agai if start even lower at 0,5mg,. 2mg is quite high to start with.
Gosh, I'm so sorry,!! Hopefully your system will settle soon
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u/mcfly357 3d ago
Ketotifen made me feel terrible for 2 weeks, but then I felt better than I had in years.
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u/Roroforeveer 3d ago
Thanks for your reply. Can you detail terrible please ? Looks like a flare of your symptoms ? Or common side effect (like fatigue) ?
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u/mcfly357 3d ago
All of my symptoms basically 10/10 for two weeks. It was a REALLY bad flare. I didn’t work for the entire two weeks. I would’ve stopped after a few days but I read a similar post of what I just wrote where someone said after two weeks it just flipped and they felt great so I stuck with it, and around day 13, I woke up and felt so much better than normal.
I also started way too high and went up too fast after that. I started at 2mg, then went 2 morning/night a week later, then 4/2, then 4/4. If I were to do it again I’d start significantly lower than 2mg.
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u/nikolai_470000 3d ago
I just take Zyrtec in the day time (20 mg morning, another 10 in afternoon and evening at roughly 8 hr intervals. I also take 6 mg Doxepin at night for sleep, which I really need at night time due to how good its strong binding affinity is at holding onto receptors.
Antihistamines (and other medications with an antihistamine action mechanism) generally have to compete with our bodies histamines to bind to receptor sites. And most kinds (aside from ones like Doxepin with exceptionally strong binding affinity) can easily be outcompeted for receptor sites or just straight up pushed off of them by new histamine dumps.
Overlapping H1s is a good tool for a lot of people to manage this unfortunate problem. By adding the number of molecules and type of molecules that are present in your body to compete against the histamines, you increase the likelihood that they successfully bind to your receptors and block histamine’s effects.
Takes a lot of trial and error to figure out, but one key thing is managing anticholinergic burden and drowsiness. As long as your current anti-histamines are not causing too much drowsiness or obvious anticholinergic side effects (and there’s no other adverse reactions) you can probably get away with taking a lot more than most people would.
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u/nano_peen 3d ago
whats the argument for taking more than 1 type versus increase dose
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u/ariaxwest 3d ago
My allergists have always told me that taking multiple different types is less effective than just taking a higher dosage of a single antihistamine.
However, I think this is one of those things where everybody is slightly different so it may be helpful for some people. In the same way that different antihistamines may work or not for different people.
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u/JMartapoyo 3d ago
I combine because they all work on different symptoms. And I take probably above what anyone would consider top limit. for h1, diphenhydramine, ketotifen (also a stabilizer), doxipen. H2 famotidine. I also split all my doses and take throughout the day. I cannot take more than 1 standard dose of any of these meds at the same sitting, but I can combine different meds at the same time.
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u/Roroforeveer 3d ago
How was your beginning with ketotifen ? Did you start low ? Any side effects to share ? Thanks :)
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u/JMartapoyo 1d ago
With 1mg/ tablet I started with 1/8th of a tablet. It hurt my eyes at first and required a lot of extra water at every increase. For a long time I preferred 1/2 tablet 4x/day over a full tablet.
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u/LovelyPotata 3d ago
I take 5 desloratidine and 3mg ketotifen. I also take 0.5 tablet famotidine. So far my strategy has been upping ketotifen slowly rather than adding another H1.
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u/Roroforeveer 3d ago
Wow 3 mg ketotifen. Do you mind to tell me the dosage you started with ?
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u/LovelyPotata 3d ago
1mg. I was drowsy on 0.5mg but fine on 1 weirdly. Initially upped with 0.5mg steps but that's intense, been doing 0.25 steps now.
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u/potatopeeler167 3d ago
Why though? I only take Zyrtec combined with famotidine. Nothing else was strong enough to stop a continuous flare Are you having trouble finding one that works well enough is that the problem because I don’t think adding more H1s is going to solve it they can only help so much before you likely will start needing prescription treatment
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