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Ketotifen

Discussion in 'General Treatment' started by rosie26, May 10, 2017.

  1. rosie26

    rosie26 Senior Member

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    Tried to see if I could get this at my local pharmacy this morning and was told they can't supply it. I'm in New Zealand.

    Where does everyone else get there supply from online? Also what form does it come in, tablet or liquid and what was your starting dose. I really want to try this. I have very strange lung problems which I think is asthma-like.

    I would really like to get it from Australia but would be like to know where else I could get it online and the best quality. Thanks very much.
     
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  2. Thinktank

    Thinktank Senior Member

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    I got ketotifen from a local pharmacy, 300 x 1mg tablets for $10 or so?
    www.inhousepharmacy.vu sells it without prescription, $65 for 100 tablets.
     
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  3. rosie26

    rosie26 Senior Member

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    Hi Thinktank. Great price at your local pharmacy. Thanks also for the link.

    Only if you don't mind, how much do you find helpful in mg each day?
     
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  4. Thinktank

    Thinktank Senior Member

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    I don't use it continiously because i find it to be a very potent medicine. I use .25mg, more than that leaves me in a zombie-like state the next day. Some people go up to 6mg a day, it really depends on how much of it you can handle.

    For which purpose do you want to use ketotifen? Do you have MCAS? Or is it only for the asthma-like problem? If it's for your lungs only i can recommend you the herb boswellia, and quercetin as phytosome formulation also works to some extent.
     
    Last edited: May 11, 2017
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  5. kangaSue

    kangaSue Senior Member

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    In Oz, it's only done by compounding pharmacies, maybe it's the same in N.Z.? I had a choice of either capsules or liquid. Price for 100 capsules was around the $60 mark I think.

    Can you buy Zaditen eye drops over the counter there, that's one way to see if you will at least tolerate ketotifen without incurring much expense.
     
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  6. rosie26

    rosie26 Senior Member

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    Interesting, thanks. I thought I would start out on a quarter 1mg. Maybe I will start even smaller than a quarter for the first few times, just to get a feel of it. I'll definitely do more reading on it before I take it.

    I'm not really sure what the problem is with my lungs. I do think there is some asthma like symptoms there but also think there could be MCAS. I will trial a small dose eventually of ketotifen, all going well. Thanks for mentioning boswellia and quercetin, I will keep those in mind to try if the ketotifen doesn't work out.
     
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  7. rosie26

    rosie26 Senior Member

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    Hi KangaSue, I had forgotten about a compounding pharmacy. Over a year ago I was given a prescription for LDN and had to send it to a compounding pharmacy here in New Zealand but I was so sick at the time I didn't want to start/trial the LDN and the prescription went to waste. I think I would like the tablet form to start of with.

    Yesterday at local pharmacy they did mention the eye drops but I said I wanted the tablet ketotifen and I can't remember what they said about the eye drops now, whether they sold it or not. I will keep it in mind but will probably go with trying to get hold of the tablet form.

    Are you still taking ketotifen? What dosage do you find best, only if don't mind mentioning.
     
  8. Gingergrrl

    Gingergrrl Senior Member

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    @rosie26 In case any of this is helpful, Ketotifen is only available by compounding pharmacies in the U.S. as well. I have taken it as a mast cell stabilizer (in capsule form) for almost two years and I take 4 mg per day. I began with 2 mg in mid 2015 and after about a week, we increased it to 4 mg. It is a maintenance medication, and my MCAS doc says that it stays in your bloodstream for about 2 wks, but it is not a rescue med for an acute MCAS allergic reaction.

    When my MCAS went into remission, I reduced my dose of Ketotifen down to 2 mg per day (and reduced other MCAS meds, too) and had no return of symptoms. However, my prostaglandin levels spiked really high so we decided to go back to the 4 mg per day to try to get my PG levels back down even though my MCAS symptoms remain in remission. I found that my blood tests do not match my symptoms and since I have not had any downside to MCAS meds (once I found the right ones) I will continue to take them b/c if I stopped and the reactions returned, I would really regret it.

    I also use the eye drops (Zaditor) which are OTC in the U.S. I used prescription eye drops for about 20 yrs but as soon as I found Zaditor, I was able to stop all the others. Best wishes in finding the right dose of Ketotifen and hoping it helps.
     
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  9. rosie26

    rosie26 Senior Member

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    Hi Gingergirl, thanks. I don't quite understand the use of the eye drop form. Is it just an other avenue that works for the whole body by using in the eye or can these eye drops be taken orally as well?

    So pleased your MCAS is under control now. I remember how sick you were. Thanks for the info.
     
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  10. Thinktank

    Thinktank Senior Member

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    @Gingergrrl, It's really amazing that your MCAS has reduced to a minimum thanks to the IVIG.
    I remember that you have been floxed also, have you noticed any improvement on the fluoroquinlone-induced symptoms with IVIG?
     
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  11. Gingergrrl

    Gingergrrl Senior Member

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    My MCAS doctor said that in many MCAS patients, when you have a reaction to a smell, it goes up the nose and gets embedded into the brain and does not dissipate like it does for a person without MCAS. For me (prior to IVIG), smells were becoming out of control and I would smell them for hours after they disappeared for others and in 2015, smells alone could trigger anaphylaxis for me.

    He said that the Ketotifen eye drops could help w/smells and that some people actually used them as a nose spray. In my case, it did not work as a nose spray and I had a bad reaction to this method. But as an eye drop, they worked great. They helped w/smells and they also helped w/eye inflammation and irritation that plagued me since I was a teenager. With the Ketotifen eye drops (Zaditor) I can now wear my contact lenses with no issues. So they are not in place of the pill form, but are helpful and serve a different purpose.

    EDIT: I just saw the last part of your question, Rosie, and the eye drops would not be taken orally. My doc had recommended them as a nose spray but like I said, this did not work for me and I use them strictly as actual eye drops. Hope this helps.

    At this point, It is so hard for me to tease apart which symptoms are due to Fluoroquinolone Toxicity Syndrome (FTS) vs. severe Mono/EBV vs. three yrs of hardcore toxic mold exposure, etc. The injury to my right arm is without question from being floxed but with many symptoms it is so hard to know! I believe the mold exposure was the final trigger to my immune system that led to MCAS. The IVIG at this point has helped literally every aspect of my illness but it is so hard to say how much was due to each trigger since I had so many within a short period of time.

    The first MCAS med to truly help me was Ketotifen but the IVIG is what put it into remission. I wish I could answer your question better but with my lack of science background, I can only speculate and guess how it occurred. My fear is that when my IVIG is cut-off, everything goes back to how it was, and I have a complete regression back to square one. But at least I will still have Ketotefin and my MCAS regime if this does occur.
     
    Last edited: May 12, 2017
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  12. justy

    justy Donate Advocate Demonstrate

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    Hi Rosie, I take Ketotifen for MCAS, I was prescribed 1 mg a day, at night. The usual dose for MCAS is 2 mg a day, 1 at night, one am.

    It is EXTREMELY sedating so do be careful. Some people, like me never lose the sedating effect, others like Ginger could take larger doses. I started with 1/4 mg at night. It took me quite a few months to work up to 1/2mg, now 18 months in I am on 3/4 at night, the other 1/4 I take in the morning. It still has a sedating effect on me, but not as bad as before.

    Like most meds for MCAS it can take a while before you see improvements - sometimes many months. If it hasn't helped symptoms after say 3-6 months then I would say there is no point continuing.

    I also wanted to say that I have had an asthma like illness all my life - diagnosed in childhood as exercise induced asthma. Never had an asthma 'attack' in my life, apart from when I was 5 and was exposed to bonfire smoke. Over the years I have numerous lung infections, bronchitis etc, often chronically. 9 years ago I had pneumonia and the respiratory consultant got whiff of my CFS diagnosis and started telling me I didn't have asthma, then that it was all in my head, then that I had never had 'infections'. It got quite nasty at one point. Anyway, the point was that my asthma testing was all normal, even during an acute episode where I could barely breathe for over three months and had to just sit up in a chair or in bed and was in a terrible state. In the end I had to take steroids which didn't help as well as would have been expected, but they helped a little. The consultant continued to say there was nothing wrong with me and investigated me for faulty breathing - which I was proven not to have.

    When I saw an MCAS Dr, who also happened to be a lead clinician in asthma he said that MCAS could cause all these breathing problems, even down to seemingly having episodes f infections. He said it wasn't true asthma, but it was airway inflammation. Since being on ketotifen I have been able to gradually reduce my asthma meds, and unless exposed to chemicals or smoke have not had ANY breathing issues at all, which is wonderful. I am also not reacting as much to smoke, food cooking or perfume with breathing issues as I used to.
     
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  13. Gingergrrl

    Gingergrrl Senior Member

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    @justy that is amazing that you no longer have any breathing issues since being on Ketotefin! That is such good news and so great to hear. I have two different types of breathing issues and the MCAS/allergically based ones are completely 100% gone. The other kind is orthostatic from POTS and autoantibodies that weaken my breathing muscles. This kind is improved from the IVIG, for which I am very grateful, but they are not totally gone yet.
     
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  14. justy

    justy Donate Advocate Demonstrate

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    I keep meaning to ask you how much better you are with the IVIG? what specific symptoms have improved for you? Are you able to be more upright? do more?
     
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  15. Gingergrrl

    Gingergrrl Senior Member

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    Thanks @justy and my improvement from high dose IVIG has been global. I have more muscle strength, more stamina, better breathing, I can walk more steps inside my apt w/o wheelchair (on most days), my insane startle reflex is 100% gone, and my MCAS allergic reactions to food and smells are gone. As an example, I can now open my very heavy glass patio door, I can prepare and cook my own food, I can open water bottles and have much more normal arm strength, my scores on breathing tests improved, and I can eat in restaurants w/o fear of allergic reactions.

    I still take daily MCAS meds, plus many other meds, in addition to IVIG and am still no where near a normal person but am drastically better than I was before IVIG. The amazing response to high dose IVIG is why we think I'd be a responder to Ritux and are still fighting for this. But (compounded) Ketotefin was truly the first med that started to improve my situation in 2015 and I will most likely take it for the rest of my life. I think this is why I always respond to the Ketotefin threads b/c it was such a great med for me!

    My MCAS doctor said that he has had patients whose improvements remained permanently after they stopped IVIG but I just cannot imagine that I would be so lucky (and my understanding is that this scenario is very rare).
     
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  16. rosie26

    rosie26 Senior Member

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    Thanks for explaining all this. :thumbsup::D
     
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  17. rosie26

    rosie26 Senior Member

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    @justy Absolutely great to hear Ketotifen has helped you so much! I can relate to a lot of what you have said. My lungs feel very sensitive and it feels like airway inflammation. Sorry I can't respond to everything you have said. I appreciate what you have written and will refer to it as well.
     
  18. justy

    justy Donate Advocate Demonstrate

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    @Gingergrrl - I am so happy that all your hard work is moving you forwards. I have followed your story since you first came to PR and the progress has been very hard won. I hope the approval for the Ritux comes through and that it works for you.

    If not will you be able to get approval for ongoing IVIG, like someone with CVID would?
     
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  19. Gingergrrl

    Gingergrrl Senior Member

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    Thanks @justy and I am really hoping for the Ritux approval as well, and we're still aiming for June, but am about 50/50 at this point whether I believe it will really happen!

    Sadly, I doubt that we could get ongoing high-dose IVIG approved. But if I can get the Ritux, then we'd stop the IVIG. If I am denied Ritux, my doc will be asking for additional IVIG instead. He even asked for IVIG in the interim (if it takes a lot longer to get an answer on Ritux) but as of now my last approved cycle of IVIG is at the end of next week and then I am in limbo.
     
    Last edited: May 13, 2017
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  20. kangaSue

    kangaSue Senior Member

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    I was trying ketotifen for complex GI problems in the hope that mast cell activation in the GI tract was a big part of my woes. I had ketotifen made up as a liquid so I could easily manipulate the dose (with the calibrated syringe that came with it) but couldn't cope with it even at 0.25 mg once a day after a couple of days. Once I'm sensitized to something, it makes no difference if I play around with dose any more and I get a reaction within an hour so no, I'm not taking it still.
     
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