Ketotifen for IBS
#367001 - 03/13/12 02:21 PM
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mavera
Reged: 12/28/10
Posts: 108
Loc: The Netherlands
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Just found this article.
The mast cell stabiliser ketotifen decreases visceral hypersensitivity and improves intestinal symptoms in patients with irritable bowel syndrome
Never read about it before, and was wondering if someone here knows about it or even tried ketotifen?
Can't find anything about it by seaching the board.
I'm seeing my GI tomorrow. Last week I've had an gastroscopy with biopsies (and some other tests).
The GI mentioned (microscopic) lymfocytic infection (??), which he wanted to exclude, before we're going to try ADs.
I searched for this (rare?) condition, but it seemed very unlikely to me.
So I thought this gastroscopy was nonsence, because I already had one last year (without biopsy), it was all fine then.
But now I'm wondering if this (new?) insight might be what he is looking for..? Can one easily see (too much) mast cells in a gastro/duodenal biopsy?
Well I'll find that out tomorrow. But otherwise I'm also going to ask him about it.
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PI-IBS-C/A nausea & very bad gastric pain
meds: lansoprazol+macrogol
started EFI +FODMAPs 1/2011. 'Relapse' for 8 months. Now partly back on track again with the diet..
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I read this article when it first came out and it looked intriguing. Many of the authors are GI physicians associated with GI groups in the Netherlands, Belgium and Germany. Your GI doc might be able to get more details. However, the results in the paper suggest Ketotifen decreased verseral sensitivity, increased quality of life but with no significant impact on C or D.
The release of excessive histamine and tryptase by mast cells cannot be detected using a biopsy.
Tell us what you learn. Good luck 
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STABLE: ♂, IBS-D 50+ years - Science of IBS
The FODMAP Approach to Managing IBS Symptoms
Evidence-based Dietary Management of Functional GI Symptoms: The FODMAP Approach
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The Role of Food & Dietary Intervention in IBS
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I'll let you know tomorrow.
But if I understand it correctly, the biopsy taken was probably not for something like mast cell count or so.
For me, visceral hypersensitivity is the major problem I guess (pain&nausea).
My C is vey well controllable with macrogol still (now on movicol).
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PI-IBS-C/A nausea & very bad gastric pain
meds: lansoprazol+macrogol
started EFI +FODMAPs 1/2011. 'Relapse' for 8 months. Now partly back on track again with the diet..
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Just returned from the doc.
About the article, he didn't seem to recognise it. At first he told me that ketotifen was something like mebeverine(?!)
Anyway, he prescibed it, so I'm going try it.
The gastroscopy turned out ok, biopsies clean. He did notice my pylorus was constantly opened, but that's a functional problem. (But now I'm home I'm not sure if this can be a source of my symptoms - nausea/attacks?)
At the CT scan they saw a cyst near my bladder, but that's probably congenital.
The calprotectine in my faeces was slightly elevated (157). So he suggested to do a colonoscopy first..
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PI-IBS-C/A nausea & very bad gastric pain
meds: lansoprazol+macrogol
started EFI +FODMAPs 1/2011. 'Relapse' for 8 months. Now partly back on track again with the diet..
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There is an OTC product for itchy eyes called Zaditor which contains Ketotifen Fumarate:
http://www.ebay.com/itm/190651468368?_trksid=p5197.c0.m619#ht_557wt_901
Would this be helpful for IBS?
Cheers.
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ibs-d (pseudo)with pain and bloating
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In the trials the dosage was titrated from 2 mg per day to 6 mg per day over the course of 6 weeks. The drug likely has to be taken orally so it can be delivered directly to the GI mast cells. If you drank a whole bottle of Zaditor which won't be wise you would only get 1.25 mg of ketotifen fumarate or 0.345 mg per ml.
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STABLE: ♂, IBS-D 50+ years - Science of IBS
The FODMAP Approach to Managing IBS Symptoms
Evidence-based Dietary Management of Functional GI Symptoms: The FODMAP Approach
FODMAP Chart & Cheatsheet
The Role of Food & Dietary Intervention in IBS
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Interesting. What dose did he recommend?
In the study they increased the dose from 2 mg per day to 6 mg per day over the course of 6 weeks. Tell us how it goes.
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STABLE: ♂, IBS-D 50+ years - Science of IBS
The FODMAP Approach to Managing IBS Symptoms
Evidence-based Dietary Management of Functional GI Symptoms: The FODMAP Approach
FODMAP Chart & Cheatsheet
The Role of Food & Dietary Intervention in IBS
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He prescribed 1mg daily.. The regular dose for allergies I believe?
As I said, I don't think he is familiar with it for IBS. And I don't think he has read the article!?
I also found the dose they used in the study today (not the full article). Yesterday I just read the abstract.
Not sure what to do and what to think about this. I could call him.
I received for 4 weeks, and my next appointment is in 3 weeks.
Syl, do you have the full article?
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PI-IBS-C/A nausea & very bad gastric pain
meds: lansoprazol+macrogol
started EFI +FODMAPs 1/2011. 'Relapse' for 8 months. Now partly back on track again with the diet..
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1 mg two times a day is the regular dose used for asthma.
It might be best to call him. Tell him the dosage was titrated as follows:
"All patients randomised to receive ketotifen started with 2 mg twice daily for 2 weeks, after which the dose was increased to 4 mg twice daily for another 2 weeks to reach a final dose of 6 mg twice daily during the last 4 weeks of the study."
Yes - I have access to the full article.
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STABLE: ♂, IBS-D 50+ years - Science of IBS
The FODMAP Approach to Managing IBS Symptoms
Evidence-based Dietary Management of Functional GI Symptoms: The FODMAP Approach
FODMAP Chart & Cheatsheet
The Role of Food & Dietary Intervention in IBS
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Thanx, I'm going to call him tomorrow.
found those dosages too over here:
http://www.ibsgroup.org/forums/topic/130075-ketotifen-promising-results-try-it/
Could you sent me the article?
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PI-IBS-C/A nausea & very bad gastric pain
meds: lansoprazol+macrogol
started EFI +FODMAPs 1/2011. 'Relapse' for 8 months. Now partly back on track again with the diet..
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Where should I sent it to?
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STABLE: ♂, IBS-D 50+ years - Science of IBS
The FODMAP Approach to Managing IBS Symptoms
Evidence-based Dietary Management of Functional GI Symptoms: The FODMAP Approach
FODMAP Chart & Cheatsheet
The Role of Food & Dietary Intervention in IBS
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Received it!
Thank you
--------------------
PI-IBS-C/A nausea & very bad gastric pain
meds: lansoprazol+macrogol
started EFI +FODMAPs 1/2011. 'Relapse' for 8 months. Now partly back on track again with the diet..
Edited by mavera (03/15/12 11:37 AM)
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Been using ketotifen for 5 days now.
Started with 1mg in the evening. The next day I had lots of side effects: very tired, dizzy, little nauseous, bit of a headache/full head and very quickly irritated!
So I'm building it up very slowly now (started with 1/2mg in the evening). Yesterday tried the 1mg again, and still side effects, but I think it's getting better.
But nothing to say about the effects on my symptoms yet. Symptoms are now under control again (for a few weeks-also because of mebeverine/hypno?). But my diet is very very bad (6 ingredients). So my goal is to introduce food back.
Spoke to the GI dr today. He told me I could try out the best dosage myself. Because of the known side effects, he thought it would be better to start slowly. That's why he prescibed a low dose at first.
I read about the side effects, but wasn't aware they were so heavy! I'm actually a little stunned about the high dosages in the paper (start directly with 2x 2mg; I think I would be zombied out all day!)
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PI-IBS-C/A nausea & very bad gastric pain
meds: lansoprazol+macrogol
started EFI +FODMAPs 1/2011. 'Relapse' for 8 months. Now partly back on track again with the diet..
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So... been using ketotifen 1mg 2x daily for about a month now. The side effects have eased, but not totally. But no progression in symptoms (food).
Went back to the GI doc today.
Results from colonoscopy + biopsies were ok too. I did have a polyp which is removed.
Blood test ok. Hb and vit D a little bit low. (wondering if this could be due to me not eating calcium for over 6 months?)
The GI doc thinks I'd better quit the ketotifen.
He suggested amitriptyline, but at first he wouldn't prescibe it, because he has no experience with it.. He wanted to sent me back to my family doctor for guidance with the antiD (but my fam-doc told me that antidepressants are not used for IBS).. Otherwise the psychiatrist!!? 
I insisted he'd prescibe it to me (otherwise I will perhaps never get it; he prescibed 75-150mg daily!!) And I insisted he'd sent me through to a functional GI specialist (there is 1 in the Netherlands, but last time my family doctor did that, I was rejected).
I'm actually pretty pissed off and disappointed. I thought I was finally going to get some good guidance and advise.
So now I think I'm first trying to build up the ketotifen, at least up to 2mg 2x daily.
Otherwise the amitriptyline, starting 10mg.
?? But I think this is pretty absurd! I just got a bunch of meds and have to figure it all out myself!!
I made an appointment with my family doctor, curious what he thinks about all this. And if he feels ok in guiding me with this meds without experience in using it for IBS too. 
--------------------
PI-IBS-C/A nausea & very bad gastric pain
meds: lansoprazol+macrogol
started EFI +FODMAPs 1/2011. 'Relapse' for 8 months. Now partly back on track again with the diet..
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I've been making progression the last couple of weeks! I've been able to add some food back into my diet. Very happy off course, it's been the first time in 2 years I've had progression.
Been on 2mg ketotifen 2x daily. At the moment I'm going back to 1mg 2x daily to find out for sure it's realy the ketotifen which causes the progression...
Or perhaps just time (I felt so bad the last couple of months, I was convinced I would still get sick of all the food which made me sick during to relapse-fall 2011..)
Rice milk, banana, rice, salmon is going ok again. Courgette with some skin and oatmeal did give me symptoms..
Next I'm going to try chicken and other fish.. I hope I can add some other vegetables back in soon.
What the cause may be (ketotifen or hopefully just time) I'm very relieved I'm making progress!
--------------------
PI-IBS-C/A nausea & very bad gastric pain
meds: lansoprazol+macrogol
started EFI +FODMAPs 1/2011. 'Relapse' for 8 months. Now partly back on track again with the diet..
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Wow - that is good news. It is nice to hear of someone who is having success with this approach. Please keep us updated on your progress.
--------------------
STABLE: ♂, IBS-D 50+ years - Science of IBS
The FODMAP Approach to Managing IBS Symptoms
Evidence-based Dietary Management of Functional GI Symptoms: The FODMAP Approach
FODMAP Chart & Cheatsheet
The Role of Food & Dietary Intervention in IBS
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To make the story complete.
I stopped taking the ketotifen and still doing better. I can not eat everything yet as I did before my 'relapse', but much better than the 6 ingredients I was on for months..
I did gain weight. Not sure if it's still from the ketotifen (side effect) or purely from my body compensating after a very poor diet.
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PI-IBS-C/A nausea & very bad gastric pain
meds: lansoprazol+macrogol
started EFI +FODMAPs 1/2011. 'Relapse' for 8 months. Now partly back on track again with the diet..
Edited by mavera (07/16/12 11:34 PM)
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