The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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I'm in love with Ketotifen!

Discussion in 'Mast Cell Disorders/Mastocytosis' started by Strawberry, Aug 31, 2016.

  1. Strawberry

    Strawberry Senior Member

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    BTW, some (weirdly) good news. My newest medication Ketotifen proved itself today. We had a major gas leak across the street, and our air conditioner sucked the raw gas into the building. For some reason the building across the street was evacuated and the street shut down for a while, but our building wasn't evacuated. Even though several of the businesses could smell gas inside, as we did. Normally just small traces of raw fuel would make me quite ill and very slightly anaphylaxis, today I was able to manage without having to leave. And some parts of our office were rather strong. I have noticed that I don't get as ill behind stinky cars and trucks lately, but this proved its helping me immensely.

    Also for the record, the gas leak is fixed, and the smell has dissipated. So if I go silent for a few days (normal for me), you don't need to hit the news seeing if a block in Seattle was obliterated by a gas explosion today. I should be good for a while longer. ;)
     
  2. ahmo

    ahmo Senior Member

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    :D:thumbsup::hug:
     
  3. Gingergrrl

    Gingergrrl Senior Member

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    @Strawberry Glad you are safe and gas leak contained. Ketotefin was the miracle medication for me as well as you know. I don't know where I'd be today without it.
     
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  4. Strawberry

    Strawberry Senior Member

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    ahmo and Gingergrrl like this.
  5. perchance dreamer

    perchance dreamer Senior Member

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    @Gingergrrl, where do you buy in the U.S.? I checked on AZ, and they don't carry it.
     
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  6. Strawberry

    Strawberry Senior Member

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    @perchance dreamer We both have it made at a compounding pharmacy. Its the only way you can get it in the US, minus in eye drop form (Zatidor I believe its called). Do you also have MCAS?
     
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  7. Gingergrrl

    Gingergrrl Senior Member

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    @perchance dreamer Yes, Strawberry is correct and in the US you can only get Ketotefin from a compounding pharmacy (and not at any commercial pharmacy like CVS or Walgreens, etc) and some doctors do not know this. When I saw my MCAS doctor, he put me on it at the first appt and recommended several compounding pharms that made it. I have no idea which ones in AZ make it but if you call around you should be able to find one. It is prescription only but if your doctor prescribes it, you can go to any pharmacy you choose. Make sure it does not contain any dyes or fillers (but most compounding pharms who make mast cell stabilizers would know this). And the eye drop form (Zaditor) is available OTC at CVS.
     
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  8. perchance dreamer

    perchance dreamer Senior Member

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    Sorry, @Gingergrrl, I should have said I couldn't find it on Amazon. I'm in Texas, not Arizona.

    I was interested in this thread because I have non-allergic rhinitis and chemical sensitivities, especially to smells, and Dymista only helps to a point. I had assumed you guys were talking about an oral antihistamine I hadn't heard of, but when I looked up Ketotefin, it's described as medicine for asthma, which I don't have. Maybe it has a wider application.
     
  9. Gingergrrl

    Gingergrrl Senior Member

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    Sorry, I did misunderstand and thought you meant Arizona (not Amazon)! Ketotefin is a prescription and definitely cannot be found on Amazon. It is a mast cell stabilizer and that is the only context that I know it from but am sure it has other uses, too.
     
  10. Hip

    Hip Senior Member

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    Road vehicles pump out a different set of gaseous chemicals (and also particulates) to those found in the domestic gas supply (domestic gas is mostly methane in the UK). So it is not necessarily the case that because car fumes can trigger your MCAS, domestic gas will do likewise. Don't forget that methane can be a component of normal human flatulence.
     
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  11. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

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    Regular pharmacies here in Canada carry it, no compounding necessary (with a prescription of course). And I don't think it has any dyes or fillers (they are regular plain white tablets). If any of you are near the border that might be an option.
    I know some people on here buy prescriptions from online Canadian pharmacies, but I have no idea how that works.
     
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  12. Gingergrrl

    Gingergrrl Senior Member

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    This is what confused my main doctor initially b/c it is easily available in Canada and you do not need a compounding pharm. My MCAS however easily knew how I could get it from a compounding pharm so it really depends which doctor you ask. Also, ironically, many white tablets still contain a food dye or multiple dyes. Sometimes it is an actual "white" dye and sometimes it has red, yellow and/or blue dyes... even though the tablet is white! It is truly bizarre but for those with very strong allergic reactions to FD&C or Azo dyes, you can check the inactive ingredients from Daily Med or get a print out from pharmacist (but you have to ask for this).
     
    Jennifer J likes this.
  13. Misfit Toy

    Misfit Toy Senior Member

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  14. Gingergrrl

    Gingergrrl Senior Member

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    Sorry I missed this question earlier. I think I have lost perspective on what is expensive after being so sick the last 2-3 years but it is $61 per month for the compounded version of Ketotefin, which is actually the only version available in the US.

    When I first developed MCAS, my main doctor tried me on Gastrochrom and my insurance tried to charge me $900 per box! I challenged this and got it down to $300, which I still thought was insane, and it never helped me at all. When I found my mast cell doc and he switched me from Gastrochrom to Ketotefin it eliminated a total of 3-4 meds so the $61 a month felt like a bargain but I know it is still expensive and all compounded meds usually are.

    But it has saved my life, along with a few other things, and I would not ever be without it. You also may find a cheaper compounding pharmacy but this one was highly rated and near my home so we went with it.
     
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  15. Thinktank

    Thinktank Senior Member

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    I picked up some generic ketotifen from a local pharmacy where i live. 1 box of 300 (?) pills costs less than $5.
     
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  16. Gingergrrl

    Gingergrrl Senior Member

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    There is no generic version in the US and it can only be made and purchased at a compounding pharmacy. I know it can be bought much cheaper in other countries and I don't know why this is not the case here.
     
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  17. Thinktank

    Thinktank Senior Member

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    That's just criminal, big pharma still gets away with it.
     
  18. xrayspex

    xrayspex Senior Member

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    Gingergrrl or others--did you try the OTC eyedrops before you got the compounded version? I am wondering if that is reasonable way to test it out before go to trouble of compounding--I have MCS and most things can't tolerate so I don't want to bother with doctor to get it unless think there is good chance it will be tolerated. thanks for any thoughts....
     
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  19. boohealth

    boohealth Senior Member

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    This is a good idea because eyedrops go systemic anyway...that's why certain glaucoma eyedrops cause heart symptoms.
     
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  20. Strawberry

    Strawberry Senior Member

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    I did actually try the Zatidor eye drops first, on gingergrrls recommendation. It almost immediately made my skin rash itch subside, which was a nice and unexpected result. It doesn't itch enough to make me go crazy, unless I get hives from the sun, but to suddenly not itch felt fantastic! I think I did notice a slight lessening of the airborne MCS pollution reactions, but it wasn't as obvious as the skin itch. The pill form does help a little with MCS reactions.

    FWIW, it does make my eyes sting something fierce, but that goes away after a few minutes.

    The bitterly dry cold air we have been having has made me taper, and finally quit the ketotifen to try to get my nose to quit hurting and bleeding. I have a few extra pills if you would like me to mail you some (up to 4?). PM me if it interests you. They are so small I can use regular mail so it would only be a postage stamp. :) I think they are 1mg?

    Best of luck to you. It isn't a lifesaver to me like it was to gingergrrl, but I sure do love it! Not a cure for MCS, but it does help some.
     
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