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Ketotifen and where to get it (Read 7865 times)
sandyb
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Ketotifen and where to get it
03/10/11 at 13:09:47
 


Hi. I saw Dr. Castells two weeks ago. She prescribed me Ketotifen but my pharmacy doesnt have it. Can anyone point me in the right direction

Sandy
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Tess
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Re: Ketotifen and where to get it
Reply #1 - 03/11/11 at 11:51:05
 
I was told you can only get it in Canada and Europe.
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Starflower
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Re: Ketotifen and where to get it
Reply #2 - 03/11/11 at 12:21:54
 
Right... it's not FDA-approved.  You'll have to order it online.  I suggest Canada!  I've also heard of people ordering from the Vatican.

Heather
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nikweth
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Re: Ketotifen and where to get it
Reply #3 - 03/14/11 at 09:23:48
 
I order it from the Vatican. I'll give you the info when I get home.  I send a fax and usually have it within two weeks. My allergist used to have a canadian license (we live in MI) and we found it was much more expensive to order from Canada.
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Josie
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Re: Ketotifen and where to get it
Reply #4 - 03/14/11 at 12:13:51
 
Hi everyone ,

Ketiofen is availbe from UK pharmacies , online Smiley

If I visit ill bring a suitcase full xxxxxxxxxxxxxxxxxxxxxxxx
Josie
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Riverwn
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Re: Ketotifen and where to get it
Reply #5 - 03/18/11 at 11:23:04
 
Mike was telling me there was a problem with the Canadian pharmacies (dont remember what it was_...soooo, he was suggesting that people who need  it, buy it online from England  (best source now). Hope that helps.

One point from me--Last year the govt passed a new law , something like "The Orphan Drug Law," to help people with rare diseases cut through the red tape of FDA and get the drugs they need quicker--well I havent seen ANY help from it as of now.. has anyone else??
Ramona
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Riverwn
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Re: Ketotifen and where to get it
Reply #6 - 03/19/11 at 07:47:07
 
Follow-up to m last post, heres the latest info on that law;

(dated Feb 2011)  This is an excerpt, read the entire article at;

http://www.fda.gov/regulatoryinformation/legislation/federalfooddrugandcosmetica...


Orphan Drug Act

CONGRESSIONAL FINDINGS FOR THE ORPHAN DRUG ACT

The Congress finds that---

(1) there are many diseases and conditions, such as Huntington's disease, myoclonus, ALS (Lou Gehrig's disease), Tourette syndrome, and muscular dystrophy which affect such small numbers of individuals residing in the United States that the diseases and conditions are considered rare in the United States;

(2) adequate drugs for many of such diseases and conditions have not been developed;

(3) drugs for these diseases and conditions are commonly referred to as "orphan drugs";

(4) because so few individuals are affected by any one rare disease or condition, a pharmaceutical company which develops an orphan drug may reasonably expect the drug to generate relatively small sales in comparison to the cost of developing the drug and consequently to incur a financial loss;

(5) there is reason to believe that some promising orphan drugs will not be developed unless changes are made in the applicable Federal laws to reduce the costs of developing such drugs and to provide financial incentives to develop such drugs; and

(6) it is in the public interest to provide such changes and incentives for the development of orphan drugs.

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Riverwn
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Re: Ketotifen and where to get it
Reply #7 - 03/19/11 at 07:50:06
 
Also, for those of us in the US, looking to buy Ketotifen,  I just got this info off another list;

"I get ketotifen from a compounding pharmacy in Washington State. Three months of 1 mg 3 times a day is $120 (270 capsules - 1 mg ketotifen compounded with cellulose, about 45 cents a pill) plus shipping. I used to get the ketotifen prepared in pure water, which worked great but was more expensive. Most patients start with 1 mg 2 times a day, so that would cost less for the water solution or the capsules. Their phone number is 1-800/480-3432 (Clark's Pharmacy)"
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Riverwn
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Re: Ketotifen and where to get it
Reply #8 - 03/20/11 at 06:22:29
 
Wrong phone number...
the phone number to Clark's Pharmacy in Washington state. Here it is again. 1-800/480-3432 An alternate number is 1-425/881-0222
My thanks to Rochelle.
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sandyb
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Re: Ketotifen and where to get it
Reply #9 - 03/20/11 at 08:12:02
 
Thanks for the info. Dr. Castells nurses just got back to me and said Canadameds.com but after Mike's response I am not going to get it there.  TongueI am very apprehensive about trying it for fear of the side effect of weight gain and drowsiness. Has anyone taken it noticed those side effects? If so, to what degree and is it so great that I should try it anyway?
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mikev
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Re: Ketotifen and where to get it
Reply #10 - 03/21/11 at 02:33:30
 
Sandy:
I don't know if you got my reply so will repost it here. Have been taking it now for 3 week. As I mentioned I started 1/2 tablet daily as had heard the same stories of the drowziness. I got the tablets instead of the capsule for that reason. Has no additional drowziness so upped to a full tab last week. Still no more drowziness than usual, so I very happy. I have not experienced any weigh gain other than it's a busy time of the year in my wife & my family for birthdays. Nothing like the 10#'s that I gained on prednisone in the 2 weeks that I took it way back when. As I mentioned I'm not taking the generic as right now my Canadian friends say they are having production issues up there & the Indian generic version I wanted no part of. My skin which is my main symptom feels no worst in fact maybe some better, of course this could be the usual mind trick when starting something new that you want to work so bad. I also started if for another reason, I'm approaching medicare time and even with supplemental insurance I can't see them wanting any part of the exorbanant price of gastrocrom. Azur could put it in a pill & charge a reasonable amount as it is an old drug but they don't.
I'm as afraid of trying new things as any of us, but so far so good of course it could change in a heartbeat.
Hope this helps & for others right now I'm using the Novatis Zaditen which is the non generic name for ketotifen at northdrugstore.com. The only problem is that having it come from England took about 3 weeks, but they gave me tracjing info & I tracked all the way through customs till I received it registered mail. Now I have a question & maybe Heather or someone else could answer this. The info that I got from the drug company basically called it a histamine blocker but also used as long term asthma preventive. Does this mean it has H2 characteristics just like singulair or zyflo that I take? Would this mean I could do away with the H2's.
Hope this helps
Mike V
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Starflower
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Re: Ketotifen and where to get it
Reply #11 - 03/21/11 at 04:00:21
 
Hi Mike,

That's smart of you to experiment with ketotifen when you still have a choice Smiley

Ketotifen is an H1 antihistamine, but it also has mast cell stabilizing properties (unlike many of the other H1s).  It won't replace your H2s or your leukotriene inhibitor (Singulair or Zyflo).  It might replace some of your H1s... but I think the general practice is just to take it in addition to whatever you're already taking.  I think that's what Lisa is doing.  Lisa?

Heather
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We're all in this thing together
Walkin' the line between faith and fear
This life don't last forever
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Lisa
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Re: Ketotifen and where to get it
Reply #12 - 03/21/11 at 08:47:07
 
Yes, I had Ketotifen introduced by an immunologist.  He added it as it's own medication in that I was on only allegra in the AM and then Ketotifen in the PM - only 1mg and then he upped it to 2mg.  

This doctor really didn't know how to deal with a masto patient for my meds were incredibly low dosed in comparison to what I have going now.

It was my masto specialist who upped my doses of antihistamines but kept the Ketotifen as it was at 2mg.  It then became an "additional" medication and not my primary med cause I was put on allegra on the AM with ranitidine and then ranitidine in the pm.   However, it was Dr. Castells who upped them all putting allegra am and pm, doubling the ranitidine as well to 300mg and then upping, at my request, the Ketotifen to 6mg a night.  

After all of the recent research coming out about the involvement of mast cells, the damage of their mediators and the need to stabilize them, I have become a believer in high doses of Ketotifen and other MC stabilizers!!!   So, in my opinion 2mg isn't enough, we patients need to be higher.  But of course, you need your doctor's involvement for each of us is different.

Lisa
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mikev
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Re: Ketotifen and where to get it
Reply #13 - 03/21/11 at 09:03:35
 
Lisa/Heather:
Thanks for your response. Lisa that is my plan is to up the ketotifin but slowly building myself up. Since Im on gastrocrom now as well I'm get mast stabilizers from 2 sources. But want to use more ketotifin as from what I've read the body abosrbs it a lot better than gastrocrom.
My doc had me really worried that it would knock me out, but not the case. It hasn't even made the what I call, the morning drug fog, ie the before a couple cups of coffee fog, worst. I'm waiting for Canada to get back into production mode then will get their generic, but that Indian  generic one worries me.
Mike V
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Lisa
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Re: Ketotifen and where to get it
Reply #14 - 03/21/11 at 09:43:43
 
Hey Mike, when I upped mine, Dr. Castells didn't say anything about going slow!  I went from 2 to 6 mg a night, overnight!!  I didn't feel any difference whatsoever!!!  She also added singulair and boy what an improvement they both made!!!   But I didn't have any issues going from the low dose on up the the higher dose, Mike.  But then, maybe that was me.  You've got to do what you think is best.


Hugs

Lisa
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Donīt forget, there is so much more to life than being sick!
 
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