# Ketotifen, promising results. Try it?



## Siea (Jun 21, 2010)

Fred37 said:


> I pulled down the entire article ("The mast cell stabiliser ketotifen decreases visceral hypersensitivity...") from BMJ using a free trial subscription. Here's a quick summary:The researchers did an 8-week trial with 60 IBS patients (9 IBS-C, 22 IBS-D, 29 IBS-A) and 22 non-IBS patients (controls). The dosage of ketotifen was as follows over the 8 week study:- Weeks 1-2: 2mg twice a day- Weeks 2-4: 4mg twice a day- Weeks 4-8: 6mg twice a day(Note that the standard dosage for asthma treatment is 1 mg twice a day, so this is significantly higher, although it's difficult say whether it's the length of time or the amount of the drug that makes the difference).My take-away from the article is that ketotifen made a significant difference to a lot of the patients and increased their quality of life. At the start of study 30% of the patients complained of severe abdominal pain, but this was down to 7% by the end of the study (see Figure 4). Those on placebo didn't have much change. Other more objective things the researchers looked at didn't seem to change much during treatment, such as mast cell counts, histamine release and tryptase release. "Visceral sensitivity" (sensitivity of the colon/rectum to pain) was significantly reduced. The researchers were not quite sure whether ketotifen's antihistamine or mast cell stabilizer properties causes the improvement.Note that ketotifen (oral) is not available in the US (not sure why). It is available in Canada and some places in Europe. I notice that goldpharma.com has it for $44 USD for 100 1mg tablets. Not that I'm encouraging that route ...
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He linked http://www.collegepharmacy.com/ASD/Woeller_Ketotifen_Protocol.pdf which was good info about ketotifen. I have found a place to buy it cheap (3$ for 30 tablets): http://www.24apoteket.com/product_page.asp?id=779Alternatively a little more expensive at goldpharma.com that Fred37 found.1. The experiment period was 8 weeks. But I wonder is there any limit in time that you can eat this med or can you take it forever without building tolerance?2. Has anyone from this forum tried ketotifen with any success or is it such a new discovery no one has tried yet?3. Should I try it or is there any risk to it?


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## Siea (Jun 21, 2010)

Answer to 1:According to the info I read (few webpages only). You have to take the med regulary for it to have the best effect. Nothing is said about tolerance or that you cannot take ir for more than 8 weeks or something. Since it is against asthma to begin with I assume I would be able to take it "forever".


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## Siea (Jun 21, 2010)

No one know anything about this medication?I really want to try it so if no one got anything bad to say I'll guess I will buy it.


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## MIRMAK (Sep 27, 2009)

Siea said:


> No one know anything about this medication?


I'm currently trying, I started it last tuesday, for now I don't feel a big difference, most probably too soon to tell. I take 2mg twice a day currently.P.S. I have severe IBS-D.


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## Siea (Jun 21, 2010)

Ordered like 500 tablets now so I will start in around 12 days when it arrives.I also got severe ibs D if not eating calcium. With calcium it is somewhat manageable (don't go long from a toilet but I can take a walk outside the house).Also eat imodium on days when I need to be outside my home alot.It is worth testing everything to get my freedom back. I hope this can give some improvement. Time will tell...


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## BQ (May 22, 2000)

Moderator hat firmly on:I'm sorry Doc but you will have to share only what has helped _you_. If you wish to counsel anyone.. please do it OFF the IBS board please. Use email etc... There is NO current research that says ANY IBS or IBD's can be permanently "corrected" or "fixed". To tell people otherwise is misleading at the least. Please refrain from doing so.Thank you for your cooperation.


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## BQ (May 22, 2000)

You may put your email in your profile for others to see and you may list your website in the "Websites & Services" Forum.Thank you again for your cooperation.


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## BQ (May 22, 2000)

Also Doc, I forgot to mention, you can also put your website in your profile as well.Thanks!


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## Kathleen M. (Nov 16, 1999)

Please put that in your profile, only, see my reply on the other thread.


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## MIRMAK (Sep 27, 2009)

to Seia: so how are you doing? Did ketotifen make any difference to your IBS?


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## Siea (Jun 21, 2010)

MIRMAK said:


> to Seia: so how are you doing? Did ketotifen make any difference to your IBS?


Not arrived yet. If they hold their delivery date it will come on monday.So hope to start next week. But not that uncommon for shipments to be late.


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## Siea (Jun 21, 2010)

MIRMAK said:


> to Seia: so how are you doing? Did ketotifen make any difference to your IBS?


How is it going for you?What week are you in and are you following the scheme (dosage) quoted in my post?


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## MIRMAK (Sep 27, 2009)

Siea said:


> How is it going for you?What week are you in and are you following the scheme (dosage) quoted in my post?


It is now already in fourth week. I used a little bit different scheme: first week 2 mg, second week 3 mg, starting from third week I increased to 4 mg. Most probably I will go to 6 mg after fourth week, but then I will need ask doctor to prescribe me more, because she wrote on prescription that I need to take 2-4 mg a day, so it will end very soon if I will start to take 6 mg a day.Going for me, I don't really know. Definetely it is better than it was. I have less issues, but I still have problems every day, I can't say that I'm "normal". I feel less pain, I need to go to toilet less frequent, but still have problems with not well-formed stool and also mucous exrections.BTW, I'm also taking B6 and B12 in the same time, which I think should not hurt. I'm just so tired of IBS, so willing to try more than one thing in one time to fix all this problems.


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## Siea (Jun 21, 2010)

MIRMAK said:


> It is now already in fourth week. I used a little bit different scheme: first week 2 mg, second week 3 mg, starting from third week I increased to 4 mg. Most probably I will go to 6 mg after fourth week, but then I will need ask doctor to prescribe me more, because she wrote on prescription that I need to take 2-4 mg a day, so it will end very soon if I will start to take 6 mg a day.Going for me, I don't really know. Definetely it is better than it was. I have less issues, but I still have problems every day, I can't say that I'm "normal". I feel less pain, I need to go to toilet less frequent, but still have problems with not well-formed stool and also mucous exrections.BTW, I'm also taking B6 and B12 in the same time, which I think should not hurt. I'm just so tired of IBS, so willing to try more than one thing in one time to fix all this problems.


I'm glad to hear an improvement. Hope it increases more over time.I myself ordered it online so don't need a prescription (don't think it is even available in sweden).I believe you can easily test if the B vitamins make a difference. Just stop taking them for 2 days (should not affect the diet that much) and see what happens.I started eating Caltrate+D this summer and that has been an improvement for me. I need to go less and I make less sounds and the stools are better shaped when I go.I am hoping this med will give another improvement on top of the calcium.Just waiting for delivery now....How about side effects?Did you notice any?


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## MIRMAK (Sep 27, 2009)

Siea said:


> How about side effects?Did you notice any?


Forgot to mention it. Before Ketotifen I was on amitriptyline which in the beggining make me really sleepy and dizzy and also almost every day I felt dry mouth. With ketotifen I don't feel all of this. I don't have it or maybe it is less than with amitriptyline, so I don't pay attention. But it seems to me that it did something to my urination, because I need to go to urinate more often than before and something even if I just came out from toilet I still want to go again to urinate, but it's still not so bad as IBS itself


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## Siea (Jun 21, 2010)

My Ketotifen shipment is delayed. Dunno for how long but would assume like 2 weeks...It feels good though, since this give me a chance to try the B6 and B12 vitamins for a month before Ketotifen and therefor I will most likely get a feeling for how the B-vitamins are affecting me.


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## MIRMAK (Sep 27, 2009)

Hm... I'm not sure about my results anymore. I'm currently taking 6 mg a day (3 in the morning and 3 in the evening), but I don't really feel a lot of difference compare to amitriptyline. Maybe I feel less pain or pain less frequent, but D is still here and I still have problems with mucuos excretions. So I'm not sure if I should ask my doctor to prescribe more of it... Maybe I will go for Dr. Snow treatment...


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## Lookin'foraLife (Jan 2, 2009)

I'm taking ketotifen for my IBS-C and I felt a difference the first day.I can only tolerate 1 mg taken before sleep since it has a strong sedating effect on me.I've been taking it for a week now, significantly less pain and discomfort, I'm just not sure if what's helping is the anti-inflammatory effects of the sedation!


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## Optimist-P (Feb 1, 2011)

I've also gotten a prescription from the doc and have noticed its sedating effects. Do NOT take it before work or early in the day. Make sure you are at home, I've noticed this effect happens sometimes. Sometimes it won't make me sleepy. So far I've taken it on and off, helps slightly. Sometimes I believe its working but it could also be in my head (relaxing = less stress = less IBS) I will continue now every night when I have my usual flare-ups and post results after a couple of weeks on it.


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## kenbkb (May 21, 2011)

Does anyone have any further updates on the Ketotifen for us long sufferers of IBS??? Thanks so much.


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## aurora54 (Apr 17, 2012)

I get Ketotifen from Clarke's Pharmacy in Bellevue, WA. You need a prescription and they compound it. It's an "orphan" drug-- it was approved for children's asthma, and when its certification expired, no-one wanted to renew it because the drug is cheap and the new testing required is expensive, so it's not widely available--but for profit reasons, not medical ones. I just started on it last night, and already have had a better day.


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## Siea (Jun 21, 2010)

aurora54 said:


> I get Ketotifen from Clarke's Pharmacy in Bellevue, WA. You need a prescription and they compound it. It's an "orphan" drug-- it was approved for children's asthma, and when its certification expired, no-one wanted to renew it because the drug is cheap and the new testing required is expensive, so it's not widely available--but for profit reasons, not medical ones. I just started on it last night, and already have had a better day.


How did it go?


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## jmc09 (Oct 5, 2009)

If its used for childrens asthma is it an anti inflammatory drug?


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