The 12th Invest in ME Conference, Part 1
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Ketotefin in Eye Drop form (for those with MCAS/allergies)

Discussion in 'Mast Cell Disorders/Mastocytosis' started by Gingergrrl, May 28, 2016.

  1. Gingergrrl

    Gingergrrl Senior Member

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    I just learned from my MCAS doc that Ketotefin is available in an eye drop form called "Zatidor" in the U.S. (not sure about other countries) and it is non-prescription/ OTC.

    I've been having horrible reactions to smells since a flood in our apt that led to new walls, ceilings, carpet, paint, etc, and cannot tolerate them as hard as I try. My MCAS doc said that the memory of the smells get embedded in the nerves in us in a way that they do not in normal people. (Am paraphrasing and this is not a direct quote!)

    He said that these Ketotefin eye drops can also be used as a nose spray and can sometimes help with this issue. I found them at CVS today and tried them as an eye drop with no issue so will try it as a nose spray next. If it could help me to tolerate smells, it would be amazing and just wanted to post this in case it can help anyone else out there.

    I had no idea this product even existed! Has anyone else ever used it for MCAS or allergies? If it works well, I will replace my prescription eye drops which would save a lot of money!
     
    Last edited: May 28, 2016
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  2. Gingergrrl

    Gingergrrl Senior Member

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    I want to addend my own post that this product did not work well as a nose spray and burned my throat and caused it to narrow with massive phlegm to the point of needing my rescue med.

    I do not fault my doc for the suggestion and it actually did help eliminate the paint/VOC smell from my brain that I had been exposed to earlier in day but was not worth the reaction. I tolerate Ketotefin very well so I was definitely reacting to one of the preservatives or additives in the product.

    I won't be trying it again but will keep this here for future reference in case any other MCAS patients do a search for this product. And it still might be okay as an eye drop but just not nose spray (or just not for me!) So much experimentation with this disease, it never ends!
     
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  3. Jennifer J

    Jennifer J Senior Member

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    Thank you for telling us about it. I was excited to read about it. Sorry, it caused that reaction in you and you needed your rescue med. @Gingergrrl :(.
     
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  4. Gingergrrl

    Gingergrrl Senior Member

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    Thanks and it actually kinda worked in the sense that it helped me to tolerate the paint/VOC smell from earlier in day but I reacted to the preservatives which is often why I don't tolerate meds (dyes, fillers, preservatives, etc). It's a bummer but I am kind of used to it now!

    ETA: my doc also said if having a strong reaction to a smell, I can take an extra Ketotefin pill itself (vs. this eye drop experiment) so I may do that next time. I really want to avoid ever having to wear a respirator mask so am trying other things first.
     
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  5. leela

    leela Slow But Hopeful

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    Did using the drops in your eyes help at all with the smells?
    I wonder if the nasolacrimal duct connection would allow for that?
     
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  6. Gingergrrl

    Gingergrrl Senior Member

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    It's a great question and have no idea! I am hesitant to try it again this soon but may try it in future as an eye drop (as it was meant for) and see if it helps me to tolerate smells. Right now am having to choose between paint/VOC's or mold and no good options for me so was getting desperate!
     
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  7. leela

    leela Slow But Hopeful

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    @Gingergrrl Do you have a great VOC filter? If you have no option but to be in a place with new paint etc you'd do yourself a huge favor to run a really good filter in your space. I could not exist without my IQ Health Pro Plus. Very expensive but worth every penny five times over. Seriously has saved my arse again and again.

    In the meantime, any chance you can tent outside for any times you don't absolutely have to be inside? I know I'm not saying anything you don't know...I just worry a bit bc I know how sensitive you are, and in my case, a brand new house was one of the last drops in my health bucket before I collapsed.
    I'm not sure if "tolerating" the smells is good news for us. I think the wonky hypersensitivity might actually be warning us that we are approaching systems overload, ppm exceeding ability to escort out.

    One last OT thing...if your MCAS is related at all to gut permeability, I just recently was prescribed this stuff by a new practitioner: Restore. I was amazed at the instantaneous positive effect it has had in my looooong term intractable gut issues.
    I completely love this stuff and am passing it along in case it is something that is also helpful for you.
     
  8. Gingergrrl

    Gingergrrl Senior Member

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    Thanks @leela and agree with everything you said and in a really weird situation once again due to this massive flood in our apt from burst pipe in unit above us at beginning of May. Cannot tolerate the amount of VOC's at all and have really tried so my husband is going to try an ozone machine but ideal solution is they move us to another unit in same bldg which we hopefully find out tomorrow.

    Have been staying with my parents which has been easier for me than the VOC's even though they have mold. I literally cannot believe we are in this kind of situation again.

    I looked at your link for Restore and can't figure out the ingredients. I clicked on everything and they show a label in one place but it is blurry and says "proprietary blend." Do you know what is in it? No worries if you don't. New products are always very risky for me with MCAS but also like to learn about anything that could help me.

    Thanks again!
     
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  9. leela

    leela Slow But Hopeful

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    Took a picture of the label :)
    I think these are very trace amounts, as normally I avoid iron and copper but this doesn't bother me.
    Knowing how sensitive I am he suggested starting at three drops. I was able to titrate up to one teaspoon very quickly,
    as its friendliness to my personal microbiome was immediately obvious.
    I have no understanding of how Lignite would repair leaky gut, but based on how much this has helped in just a few days,
    I don't really care! I'd gone down to 95lbs so this was really timely for me--but we're all so different!
    photo.JPG
     
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  10. justy

    justy Senior Member

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    So sorry yu are in yet another awful living situation. I certainly couldn't tolerate a new building, paints etc, we can only use VOC free ones in our house. New furniture is also an issue for me - we bought some new book cases and they were off gassing so badly it made me really ill - we had to put them in a spare room, open the window and shut the door and left it like that for 4 months!! Now they are in the room, but I can still smell them.

    Hope you get it sorted soon. A different apt may be the only answer... we are buying a new house and no mold, or new paint or new building works were a priority for me.

    Restore contains histadine - don't think this is a good idea for people with MCAS as its a precursor to Histamine, but im not sure.
     
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  11. leela

    leela Slow But Hopeful

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    @justy I know, it's weird..I am histamine intolerant and yet this stuff is some kind of magical elixir for me.
    I'm wondering if it's because it's a soil-based trace element thing, where the elements are in natural balance,
    and in very tiny amounts? I dunno. Not trying to push it on anyone--just beyond delighted that after all these years of trying everything, something is working on my gut!
     
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  12. Gingergrrl

    Gingergrrl Senior Member

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    Thanks @leela for taking a picture of the ingredients and I really appreciate it and am so glad it's working for you. The histadine (what Justy mentioned) does concern me and a few other ingredients. I might ask you some questions about it later via PM.

    @justy Yes, we had the most perfect apt from Sept-May (perfect for someone with MCAS like me, I mean) until this massive flood on 5/4 from the unit above us. It destroyed our bedroom and bathroom and while they fixed it promptly and paid for our hotel and truly did everything honorably-- the new walls, ceilings, flooring, carpet and paint are more than I can handle and if I try to stay there, I would soon need a respirator mask.

    So am staying with my parents who have mold but am in a room with hepa filter and huge open patio door with fresh air and the mold is not as bad as the VOC's. My MCAS doc said the smells get embedded in the nerves and he has patients who go into anaphylaxis from smells alone (vs. eating food/ingesting something like me.)

    So far I am able to overpower the smells but at great cost and they make my brain feel like it is on fire and burn my eyes, lungs, throat and I can retain the smell in my brain for hours to days after it is gone as crazy as that sounds.

    Am so close to getting IVIG approved and now don't have a place to live again. It's like I'm not meant to live on this earth and the odds of this happening (in different versions) for the third summer in a row is unreal. We can't figure out a good solution but am doing these treatments if approved by insurance no matter what.
     
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  13. Jennifer J

    Jennifer J Senior Member

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    @Gingergrrl, I'm sooo sorry you are going through all you are going through. Hang in there. Hugs.

    I have some questions about what you posted. Please don't respond or even read this at this time, if it's not good for you to do so.

    Sorry, again, that happened. :(

    I was curious about your rescue med. Not that you are recommending it for anyone. Is it Atarax? I think you've posted elsewhere that you have never needed to use an Epi-pen. I'm hoping to never have to use mine either. I have many concerns about using it.

    You have had anaphylactic reactions and your rescue med was enough? I'm just trying to figure all this out as far as possibilities for me. I'm having more and more reactions to things, and will be trying other things that might make my reactions worst. I want to be prepared as possible especially due to my ME/CFS and living situation, it will be hard for me to get help to me or get to help.

    How quickly does your rescue med work? Any details that you are comfortable sharing would be helpful.


    I hope you don't have to wear a respirator, too. Hopefully, your landlord will come through with another unit for you, or another better living situation you can be in soon.

    Do you have a respirator mask? I'm wondering if this is an option for me, if needed. What kind is it and is it sufficient?

    I hope you don't mind all the questions. Again, please don't respond at this time if it's not good for you to do so.

    That's not good, but it is good to know. I've wondered about that. I try to get away from the smells once the burning starts, or burning and swelling... Lately, I've been wondering if I could stand the burning and other symptoms if they didn't get to bad, if I could stick out smelly situations and be alright. Doesn't sound like a good choice.

    It sounds awful the burning. I only experience this in my mouth, lips and tongue. I understand the retain the smell. It's so strange, even after the smell is gone, it feels like it's sticking to my cells. I can still smell and taste it for hours to days.

    My whole being is screaming out, there has to be more help for you. Please take good care of yourself and keep pressing forward as you do. We all care about you, and want much better days for you. I hope the IVIG treatments get approved and that it will help a lot. :hug:
     
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  14. Gingergrrl

    Gingergrrl Senior Member

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    Thanks, Jen, and I so appreciate your PM's and messages and think you are one of the kindest people on this board. You are never bothering me with questions, so please do not ever feel that way, and I wish I could provide better answers!

    Yes, Atarax, is my rescue med from a compounding pharmacy with no bad fillers and dye-free. There are times it has literally saved my life and am certain without it, I would have progressed to needing an EpiPen (from reactions to food, not smells.) I carry the EpiPen in my purse but have never used it and also have many concerns about it. I do not know why Atarax works so well for me but it not only works, it has no side effects (for me) like Benadryl does.

    I have no idea of his availability (and his name escapes me at the moment) but I know there is an MCAS specialist at Scripps in San Diego in case he might be an option for you? Mine is in LA but if I had not been able to become his patient, the doc at Scripps was my next plan. There are very few of them in our state or in the world.

    For me, the Atarax is enough and I've never needed the EpiPen. Last summer I was in the hospital on IV Benadryl and had never even heard of Atarax. When I developed a toxicity to Benadryl (after about two weeks of IV, then shots, plus pills) I thought I was out of luck. It took two months to get appt with my MCAS doc last summer after hospital and he immediately suggested Atarax as the rescue med and also added Ketotefin (and recommended a specific compounding pharmacy) and the two have been a miracle. I often wonder if I would still be alive today without those two meds. But I know everyone is different and some do great with Benadryl, just not me.

    It literally works in about 15 minutes. But if someone was in stage four anaphylaxis where they could no longer talk or swallow then it is too late and would require Epi. But when I am in stage 1-2 anaphylaxis or even less than this but having a bad reaction, I take one 25 mg Atarax and it turns it around 100% of the time. This is not a large dose but I have always done well with small doses of meds. My doc said you can build up a tolerance so I cannot take it as a daily maintenance med (like I do with Zyrtec, Ketotefin, etc) and save it for rescue situations which for me are usually 3-4x a month. The pills expire b/c they are compounded with no preservatives so I usually end up with about 6-7 pills that I have to discard from each bottle after they expire but it is worth it IMO to not risk it and be safe.

    I cannot even express the level that I do not want to have to wear a mask. I started using wheelchair in Oct 2014 thinking it would be temporary and now I am completely dependent on it (motorized chair) even inside the house. Am afraid the mask would be the same. Am not saying this with any judgement, I just will do anything not to progress to needing this if it is possible. We are trying to find another unit in our same bldg but not sure if this is possible.

    I do not have one and have not researched them at all. My MCAS doc said you can order them on-line or get at a hardware store. If I research this and get more info, I will definitely let you know.

    He said something along the lines of that the smell gets embedded into the nerve and then the nerves hold the memory of the smell. I was so glad he said it in front of my husband b/c this is one of the hardest things for someone to grasp who does not experience it. I feel like it is comparable to asking someone with a (moderate but not fatal!) peanut allergy to eat a peanut and then just suck it up and tolerate the reaction and hope for the best. No one would ever do that b/c the mechanism of true IgE allergy is understood vs. this sounds so crazy. I know the mechanism will be understood some day, and my MCAS doc understands it now, but he is one in a million.

    My sense is that tolerating the burning, swelling, angiodema, third spacing, throat narrowing, and everything that comes along with it is not good for us and it's better to avoid the triggers when you can.

    My reactions to smells are usually burning in eyes, throat, lungs, and brain and I can start shaking and get confused and agitated very quickly and it takes pure willpower to try to overpower it. Sometimes if I am prepared in advance that there might be a smell, I do better than when I am caught off-guard. And like you, the smell stays in my brain for hours to days after no one else can smell it.

    Thank you so much and I am pressing forward as I know you are, too. I am on the edge of getting some real treatments and just need to make sure I have a place to live while I am doing them. Luckily the next hoop I have to jump through with insurance for IVIG will take a few more weeks so am hoping our bldg can find us a new unit in the mean time. The timing is horrible with relatives coming in 1-2 wks for my daughter's graduation and we are in chaos as usual once again.

    I wish there was some form of housing for people with wheelchairs and MCAS where you could just live in peace with clean air (no mold, no VOC's, etc) but this is just a dream. Please let me know if I missed anything that you asked :hug:.

    ETA: I also wish there was something that trained your mast cells and brain to overpower the allergic reactions to food and smells. I do not mean some BS CBT program that denies you are ill versus something that understands the true mechanism and teaches you how to overpower it. But this is also just a dream!
     
    Last edited: Jun 1, 2016
  15. Gingergrrl

    Gingergrrl Senior Member

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    @leela I wanted to let you know that after waiting a few days I got brave and tried the Zaditor eye drops this morning (new bottle) to see if using them in the eyes vs. nose is enough to help me to tolerate smells.

    No negative reaction to them at all so I think for the eyes, they are fine (for anyone following this thread and still curious re: Ketotefin in eye drop form)! Will be over at our apt later, still hoping they can find us another unit, so will see if they help with tolerating smells (but I know it's a long shot!)
     
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  16. Strawberry

    Strawberry Senior Member

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    Thank you 100 times for his comment! (and your analogy) I need to try to remember that one and use it in the future.
     
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  17. Gingergrrl

    Gingergrrl Senior Member

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    You're welcome and I actually made up that peanut analogy myself! My husband kept saying how you acclimate to smells and after a while they dissipate and you do not smell them anymore (for him.) Whereas for me, the longer I am exposed to a smell, the stronger and stronger it becomes until it overwhelms my entire brain and body. My MCAS doctor explained it beautifully (I wish I had tape recorded it) but it was about the smell getting embedded into the nerves which then can hold the memory for hours or days. He said some of his patients must wear a respirator mask or can go into anaphylaxis from just walking by a strong smell. I am nowhere that severe and my goal is to never get to that point. My husband gets it now (on an academic level) even though he has never experienced anything even close to it.
     
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  18. Strawberry

    Strawberry Senior Member

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    There isn't a way for us to get used to smells, and no one seems to understand that. Thankfully my reaction is nowhere near as bad as what it was in my late teens and early 20s, I used to get migraines! I have no idea why its marginally better, but it is. But for that matter, my muscles keep getting worse so no benefit.

    We moved our office one year ago, and us ladies had to pick out the carpet sample. Just being near the sample book for two minutes gave me a headache, so I asked the guy if they could open the rolls in a warehouse to ventilate it before installation. When I told him I could "smell" the book samples quite strongly, he gave me a weird look. I guess they were quite old and considered scent less. At least my boss understands I am truly allergic to chemicals, and I am not the only one in this office with chemical allergies/sensitivities.

    I may have to try the eye drop trick, and tell my co worker.

    And I intend to use that peanut analogy!
     
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  19. Strawberry

    Strawberry Senior Member

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  20. Gingergrrl

    Gingergrrl Senior Member

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    @Strawberry Sorry for my delayed response and I really like the Ketotefin eye drops (Zatidor) and think they are better than the prescription eye drops (Elistat) that I have been using for years. We had out of town relatives for a week and I was able to wear my contact lenses for about 5-6 days in a row with no issues and I really think this is b/c of the eye drops. For other contact lens wearers- I use the drops AM and PM and never while the contacts are actually in my eyes. Hope this helps.
     

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