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Ketotifen

Discussion in 'Mast Cell Disorders/Mastocytosis' started by hixxy, Sep 20, 2016.

  1. hixxy

    hixxy Senior Member

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    I've made multiple aborted attempts at trying to take Ketotifen. I'm currently tube fed because of very severe MCADs/MCS and EoE. Have no safe foods at all.

    Has anyone experienced increased sensitivity initially when taking it? From what I've heard, when it's effective, most people get a fairly quick decrease in sensitivity to foods. My environmental sensitivity escalates quite rapidly when I start on it and I have to give up as it's already too severe for me to persist.

    I've just today placed an order for compounded liquid ketotifen so I can try starting it a drop at a time.

    Very sad and frustrated since I started on tube feeding a few weeks ago as I'm not tolerating the formula well either. Seems like there's a barrier every way I turn. :-(
     
  2. Hutan

    Hutan Senior Member

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    @hixxy, that sounds miserable.
    :hug:

    I hope people have some ideas for you.
     
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  3. Strawberry

    Strawberry Senior Member

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    Hi @hixxy I'm no where near severe, so I am not sure if my response applies at all to your situation.

    I have been on ketotifen for almost two months now. Initially, I thought I was reacting stronger, but I realized that my symptoms had been lessened to the point that now I am noticing specific allergic and sensitivity reactions that I hadn't noticed before because everything was constant. My environmental sensitivities have finally diminished somewhat, but not food sensitivities. Actually, a few months ago I would have told you that wheat was my only sensitivity, which I have now found is wrong.

    It is highly possible that there is a filler or food coloring in what you are using if it isn't compounded. Do you know if it is pure of triggers? Hoping the compounded liquid is tolerated better. Are you on quercitin or any other mast cell stabilizers?

    There are others here that are far worse than I am (and on ketotifen), so I am hoping you get more responses soon. If not, maybe they will have ideas that can help you.
     
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  4. hixxy

    hixxy Senior Member

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    These were compounded cellulose capsules with only cellulose fillers so I don't think that is likely. Oh I was I could tolerate quercetin, but the salicylates just don't work for me.

    Thanks for the reply.
     
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  5. kangaSue

    kangaSue Senior Member

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    Flow rate, fat and fibre content and formula type can all influence what you can tolerate with tube feeding.

    You might need to experiment with different formulas to see what works best.There is an organic based product around receiving some good press called Liquid Hope that doesn't use the usual crap corn products as the base.
    http://functionalformularies.com/products/liquid-hope
     
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  6. Gingergrrl

    Gingergrrl Senior Member

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    @hixxy I am so sorry to hear this and I was very close to being tube fed last summer from MCAS and remember how scary that was. I got to the point that I had no safe foods except water and then was hospitalized for a week. I was able to try IV Benadryl in the hospital 30 min prior to eating and while this was not a long-term solution, it turned it around and I quickly had 4-5 safe foods (at that time).

    Ketotefin was the miracle medication for me and turned around my MCAS reactions so I was able to stop 3-4 other meds completely (including Benadryl, Gastrochrom, Zantac) and it had no side effects. If you have tried it multiple times in a compounded version with no dyes, preservatives or weird fillers, than I am wondering if it just is not the right med for you? Many people do great with Gastrochrom but it did not work for me at all, no matter how high the dose, and it just made me sicker.

    Are you able to see a Mast Cell specialist? I know they are few and far between but this is what turned things around for me. Do you have a rescue med that works for you so that you hopefully do not have to use an EpiPen? I got to the point that I could no longer tolerate Benadryl and was switched to Atarax for my rescue med and am wondering if Atarax could help you in that regard?

    I also take supplements: Quercetin (which I know you cannot tolerate), Daosin and NeuroProtek in addition to the Ketotefin and my regular H1 & H2 blockers.

    Lastly, if you do not already subscribe to it, there is a great website, blog and FB group called "Mast Attack" by Lisa Klimas which has been a lifesaver to me on many occasions. Am hoping this helps and best wishes to you.

    P.S. I loved your prior Doxie avatar!
     
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  7. hixxy

    hixxy Senior Member

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    I've tried both the fully elemental Vivonex and a peptide based formula called Nutrison Advanced Peptisorb and surprisingly the Peptisorb is the more tolerable of the 2 despite it being whey based. I don't tolerate any whole protein powders at all. They all cause severe EoE flares. So that Liquid Hope looks like a no go. I think the biggest problem with the formula is still the whey peptides even though there's no whole whey protein in it.

    Also I get this through a government program an Australia so I can only really use what's available. No way I could afford to feed myself entirely via formula on a pensioner's income without government subsidy.
     
  8. hixxy

    hixxy Senior Member

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    I tried gastrocrom at low doses and it didn't do much and at high doses just made me feel sick.

    I've seen the closest we have here in Australia to a Mast Cell Specialist. Benadryl works to a point, but I seem to get rebound sensitivity from it and horrible anti-cholinergic side-effects. Atarax was a complete and utter nightmare. Really bizarre and scary neurological side effects. I only manage a couple of doses before I threw it in the bin.

    I've tried Daosin and didn't really notice any benefit? Also not sure there's any point trying Neuroprotek, it's been a long time since I've been able to take any herbal or plant based antioxidant supplement because of salicylates.

    I take H1 & H2 blockers and get more benefit from the H2 blocker (ranitidine), but not nearly enough. I'm thinking of giving famotidine a try instead. As I already have low stomach acid, these seem to eliminate it entirely.

    The gastroeneterologist that installed my PEG has mentioned Xolair to me as a possibility, but he seems to be holding out until some unspecified future time.

    I think I will just give ketotifen another burl as drops, it can't hurt I guess.

    Maybe Doxie needs to make a return ;)
     
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  9. Gingergrrl

    Gingergrrl Senior Member

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    Same here and it did nothing for me at any dose but make me sicker.

    Am glad you saw the closest thing to an MCAS specialist that you could and have had the chance to try some different meds and supplements. I also get horrible side effects from Benadryl and ultimately developed a toxicity reaction. I have not taken Benadryl in any form since June 2015. But Atarax is the best med I have ever taken and did not have any of the side effects that you did. I am so sorry to hear that.

    I get a benefit from the supplements but at this point I cannot separate out which is from the Quercetin vs. the Daosin or NeuroProtek so I just continue to take them all as my doctor thinks they do different things and all help me.

    Which ones do you take? I take Zyrtec (Cetirizine) and Pepcid (Famotadine) after a lot of trial and error last summer. I take each 2x/day.

    I learned that there are some specific antibody tests (anti IgE and anti IgE receptor antibodies) with codes FANTI and FAIRA via Mayo Clinic that can be used to see if someone is a candidate for Xolair. Since my MCAS doctor is not considering Xolair for me, I did not have these tests as he said the info would not be useful in any other way and would not change anything that I am doing. Xolair itself can cause anaphylaxis and I am well controlled now that it is not worth the risk (for me). But in your case, it might be worth trying?

    Am hoping it helps! Keep us posted.

    Was happy to see doxie make a return! Do you have a doxie in real life? Mine is my avatar and she is almost 11 yrs old.
     
  10. hixxy

    hixxy Senior Member

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    I prefer cetirizine, but started reacting to the OTC (Zytec) tablets so am using loratadine atm. I also take both my H1 and H2 twice daily.

    I haven't heard of these tests for Xolair candidacy / response. I doubt they're even available in Australia. I could be wrong, but these tests seem to only take into account Xolair's affect on IgE and IgE receptors. From what my doctor said and what I've read since there seems to be another yet explained mechanism of action for Xolair that gives it mast cell stabilising properties that don't have anything to do with IgE.

    No doxie, although I'd love to have one. My last dog passed away late 2011 and I haven't been able to get a new one because of sensitivity (both cats and dogs!).
     
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  11. Gingergrrl

    Gingergrrl Senior Member

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    Loratadine didn't do anything for me and I found Zyrtec to work the best as my daily med. We are all so different and I am glad that you found something that works (even a little bit)?

    I have no doubt that Xolair has other mechanisms and these tests are rare here as well. A friend pointed them out to me so I asked my mast cell doctor and that was his response (re: Xolair). I guess that is the only reason he would use that test but I have no doubt there are other reasons for the testing or for using Xolair (and if nothing else was working for me, I would be pursuing it, too). Another option is Gleevec but not sure if this is offered in Australia? It was not offered to me but if my regular meds ever stopped working, I would be pursuing this, too.

    Am so sorry about your prior dog. I have been deathly allergic to cats my whole life but have always been okay with dogs (allergic wise).
     
  12. hixxy

    hixxy Senior Member

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    Yeah. I've thought about Gleevec, but it's so expensive that I doubt it would be possible for me to get as an off-label use in Australia. It's fully subsidised for cancer though.

    Wouldn't it be nice if some of these drugs actually had some drug trials for mast cell activation disorder??

    Well, when I was younger I was fine with both cats and dogs. There was a few years when I didn't have a cat and in my early 20s I got one again and have been sensitive ever since (My dad inherited that cat). I became allergic to dogs not long before my dog passed away. My sister is also allergic to both.
     
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  13. kangaSue

    kangaSue Senior Member

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    Oh, didn't realize you were in Oz too. I have resorted to accessing the subsidised enteral feeding scheme too. Luckily I'm in QLD which sounds to be the most affordable, was only costing me $30 odd per week as a public hospital patient. When I stopped tolerating the formula available on the tender list, I discovered there was provision in the enteral feeding guidelines to be granted something called Individual Patient Approval which lets you access other enteral products not on tender but still get it at the subsidised price.

    Nutricia has an elemental product too, not surprisingly it's called Elemental 028. I don't get on with any of them anymore since I developed a sensitivity to citric acid or anything ending in citrate.

    Have you had a 4 hour gastric emptying study done before? It's not unusual for some with EoE to also have gastroparesis (GP) as you can also get eosinophilic enteritis along with EoE anywhere in the GI tract.

    There was an explanation of the mechanism to describe a patient in this article,
    https://www.hormonesmatter.com/more-about-eosinophilic-esophagitis/
    [To paraphrase this in biochemical terms “for the want of thiamine (vitamin B1), action of the citric acid cycle (engine of the cell) was lost; for the want of the citric acid cycle, acetylcholine (neurotransmitter) was lost; for the want of acetylcholine, suppression of inflammation was lost; for the want of acetylcholine, normal peristalsis (wavelike action) in the esophagus and intestinal tract was lost.

    The loss of the peristaltic wave in the intestine was given the name “idiopathic gastroparesis”]

    I have a feeding jejunostomy tube and often forget that tube feeding also includes PEG tubes but, if you happen to have GP too, PEG feeding into the stomach will still cause toleration issues unless you use a j-tube extension to deliver the formula to the jejunum or at least as far down the duodenum as possible.

    I frequent another forum where there is also an EoE group that might interest you,
    https://www.inspire.com/groups/eos-connections/discussion/struggling-with-eosinophilic-esophagitis/
     
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  14. Gingergrrl

    Gingergrrl Senior Member

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    It would be a major insurance battle here as well.

    Yes, that would be amazing! Right now it is purely trial and error.

    My entire family is pretty much allergic to cats and no one is allergic to dogs. Even though I had reached a point that I was allergic to all smells (paint, VOC's, perfumes, cleaning solutions, etc, and had to buy all new "fragrance free" products for the home and for personal care), I have thank God, never become allergic to my dog. I am so sorry that happened to you and I don't know what I'd do in that scenario.
     
  15. hixxy

    hixxy Senior Member

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    I'm being cared for in the QLD system as well despite being just over the border in the Tweed area. How is the department that handles your feeding? Mine seem to be mostly experienced with non-hypersensitive patients.

    This is really good to know. They certainly don't advertise it. How did you find out about it? Can you point me to the guidelines? If you stop using Nutricia formula, do you lose the pump from Nutricia?

    Had it done while I was in hospital a few weeks ago and it was normal. I really think it depends on what I eat though. I've definitely had food sitting in my stomach for many hours after eating. The more sensitive to something I am the longer it seems to sit there.

    I only have a PEG with no J extension at the moment because they couldn't get a fully silicone J tube that was suitable when I needed it. I was severely malnutritioned and not tolerating any food so they just had to go ahead. I have this replacement on order and it will be installed after the minimum 8 weeks healing (5 more weeks to go). So yes I'm suffering more because I really needed the J extension.

    Is it very focused on children or is there a fair few adults there? Every EoE group I've ever looked at was dominated by children and their parents with EoE.
     
  16. kangaSue

    kangaSue Senior Member

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    I'm at the RBH. The Gastrointestinal Dept refers me to Nutrition and Dietetics Dept who handle everyone that has an enteral feeding requirement
    I only found it on their website a couple of weeks back. Comes ready to drink or as a powder, listed as an oral supplement but my dietitian told me most people using it tube it
    http://www.nutriciamedical.com.au/adult/oral-supplements

    Technically, you can lose the pump if you're not using their products but they don't seem to mind as long as you're using their given sets too. They have sets that will fit the top of other products so I guess they're happy as long as someones paying the rental cost.

    On the plus side, you qualify for a small yearly Centrelink payment if you have need a feeding pump, an Essential Medical Equipment rebate.
    https://www.health.qld.gov.au/directives/docs/gdl/qh-hsdgdl-030-2.pdf
    See point no. 3 which reads;
    [Outpatients receiving EN products on the List of Approved Medicines (LAM) OR have individual patient approvals (IPA) for access to EN products for indications which are not included on the Queensland Health LAM.]
    There can be a difference of opinion as to what's normal. I've had the RBH say my study was normal when another GI has said it's abnormal. If it is abnormal at any of the hourly marks, it is something to be wary of. If you felt full quickly when eating, it makes you nauseous and fat or fibre adds to the problem, it could be GP. If bypassing the stomach with a j-tube fixes the stomach upset, I'd say it's definitely GP too.
    Sorry, I'm not in that group so didn't realise it had a child focus. I'm in another group where questions about EoE with gastroparesis crop up now and again;
    https://www.inspire.com/groups/agmd-gi-motility/


    .
     
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  17. hixxy

    hixxy Senior Member

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    @kangaSue What formula have you changed to since losing tolerance for citric acid/citrates?
     
  18. kangaSue

    kangaSue Senior Member

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    I don't tolerate any of them. All the ready to hang formulas or oral supplements contain either citric acid or some other citrate (potassium, sodium, magnesium citrate etc) and they all give me worse symptoms as well as anything else with a citrate in it so forcing myself to eat orally is the least worse option.
     
  19. hixxy

    hixxy Senior Member

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    :( I feel for you. Did you go down the medication route?

    I did the force to eat orally thing with no tolerable foods for nearly 6 years with the reactions getting more severe over time. From 2012 until recently I ate only potatoes, rice, chicken, very carefully poached egg and occasionally some swede and/or choko. I also haven't had a normal bowel movement without an enema in a year and a half. Not fun at all. Took that long for a doctor to listen enough to refer me to get assessed for enteral feeding. To be honest, if I'd gotten it a lot earlier I may have tolerated it ... typical.
     
  20. kangaSue

    kangaSue Senior Member

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    I've got a really good G.P. who has been willing to let me experiment with a greater variety of things than most people would have tried where I can show evidence that they have some efficacy for any of the GI dysfunctions that I have going on so yes, I've given the meds route a fair bashing. Like food and a lot of supplements though, not tolerating meds is a big problem too.

    I've had a diagnosis of intestinal ischemia among other things and thought I had nailed a solution back in 2012 when I found that nitrates (nicorandil) along with domperidone alleviated a lot of symptoms and I could manage everything orally without vomiting but things went downhill again a couple of years later which coincided with noticing that I wasn't sweating anymore (which turned out to be Restricted Autonomic Neuropathy) so was looking at it being autoimmune (Autoimmune Autonomic Ganglionopathy or Autoimmune Gastrointestinal Dysmotilty). I haven't had a hit on a positive antibody finding although that doesn't necessarily rule those things out according to the medical literature.

    I found out along the way that some researchers have found antibodies to a7 nAChR, the cholinergic anti-inflammatory pathway, in looking for antibodies with AAG or AGID but there is no commercial test available for that antibody. Don't know but maybe it's more widely implicated in other inflammatory conditions too.

    Voltage gated calcium channel antibody was found which turns up in some chronic GI dysfunctions but in the "normal" range, if such a thing exists. Gingergrrl had a positive finding of that antibody.

    As for eating, I'm barely covering survival calories with no safe foods as such, everything makes me vomit to some degree. I tried gluten free but that made things worse. Also had a go at TPN which was as bad as, or even worse than tube feeds which the boffins don't reckon is possible but I have read accounts of dozens of people who don't tolerate lipids running all the time with TPN.

    Most people with TPN lipid issues say getting lipids only once or twice a week works best but my doctors refuse to give TPN to me without lipids, they reckon it's not good that way as it's not a complete diet then but, with no other option, no one seems to be too fussed that the diet I'm on has only got one inevitable end, pushing up daisies!
     

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