Announcement

Collapse
No announcement yet.

Ketotifen oral

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Ketotifen oral

    Some time ago I consulted an immunologist for an evaluation of my type of flushing.
    I have rosacea, - primarily type one.
    I have flushing associated with type one.
    In addition, I seem to have an additional type of flushing, which, when activated can become extreme.
    I also have adverse reactions to a number of medications and supplements. My reactions aren't limited to flushing.

    I should clarify that I managed to reverse my severe state over the years with dietary, lifestyle and supplemental interventions. Medications at times as well.

    Many years ago, I had far too many IPL treatments, .. many helped, some caused damage, but by the time I became a severe flusher, IPL was not helpful. It was like throwing gasoline on the fire.
    At my worse, my face was a swollen, crimson mess, and I was stuck in a persistent flushing state.

    Whilst I have managed to reverse the severity of the above, I am still controlled by my flushing and if I don't adhere to my strict regime, things can ramp up pretty quickly.

    I also have autoimmune disease. (Hashimoto's).

    The immunologist suggested I try oral Ketotifen, which is a mast cell stabiliser.
    I was rather hesitant to go this route as I fear rebound if I want/need to discontinue it.

    It would appear that mast cell problems run in my family, from the mild to full blown anaphylaxis, although, fortunately I have never experienced the latter.
    I don't have any IgE mediated allergies.

    Given the familial connection, I have decided to cautiously test the Ketotifen and thought I would document my experiences here.

    To be honest, I am not overly hopeful and also, I don't want to be taking such a potent medication long term. It can't be a good thing.

    I feel that my current level of rosacea flushing is due to the excessive vasculature I have in my upper cheeks in particular. It is like poor plumbing. As long as it is there, it will continue to be used. (I am also a brimonidine victim).
    So it is collateral damage induced flushing, to a large degree.
    There is a tiny part of me, which is hoping, foolishly, most likely, that if I can further reduce the flushing, and therefore give my face a rest, telangiectasias might shrink at least.
    I expect I am indulging in fantasy here.

    *******************************************

    I started the oral ketotifen about a week ago, with a half dose. (0.5mg)
    It is very sedating. I was just about comatose even after the first dose.
    For some days, I only took it at night.
    Thus far I can say, my flushing during the night, (which is quite an issue) has been significantly decreased, BUT, I am not ready to attribute this to the ketotifen yet, as I also had major dental surgery (two actually, over months) and antibiotics, so these may have played a role.

    I delayed starting the ketotifen until these two stages of dental surgery were complete. I have more next year.

    Currently I am taking the full dose 1mg twice daily.
    I still feel sedated, so if this doesn't wear off, I won't be continuing with the trial.

    Like Nat007, I tend to feel my baseline redness has increased a bit during the day. Another worry.
    So, this may be a short experiment, we shall see.


    I am continuing all my usual supplements at this stage and will continue to apply my usual topical gel and ZZ cream.
    Previous Numerous IPL.
    Supplements: High dose Niacinamide, Vit K2, low dose Vit A. Moderate Dose Vit C, Iodine, Taurine, Magnesium. Mod- dose B's. Low dose zinc. Testing Quercetin.

    Skin Care: No Cleanser, ZZ cream mixed with Niacinamide gel 4% and LMW HA 2%, ethyl ascorbate 2%.

    Treating for gut dysbiosis.(This is helping).
    Previous GAPS diet. Have now introduced lots of fibre.
    Fermented Foods. Intermittent fasting -16-18 hours.
    Oral Colostrum. Helps reduce food reactions.

  • #2
    Whilst we are on the topic of Ketotifen, I wanted to post the following studies.
    One pertains to a rosacea patient and the other an acne patient.
    The commonality is persistent edema.


    Solid persistent facial oedema (Morbihan's disease) following rosacea, successfully treated with isotretinoin and ketotifen.
    Br J Dermatol. 1997 Dec; 137(6):1020-1.
    https://www.unboundmedicine.com/medl...and_ketotifen_

    Solid persistent facial edema of acne: successful treatment with isotretinoin and ketotifen.
    https://pubmed.ncbi.nlm.nih.gov/8324275/
    Previous Numerous IPL.
    Supplements: High dose Niacinamide, Vit K2, low dose Vit A. Moderate Dose Vit C, Iodine, Taurine, Magnesium. Mod- dose B's. Low dose zinc. Testing Quercetin.

    Skin Care: No Cleanser, ZZ cream mixed with Niacinamide gel 4% and LMW HA 2%, ethyl ascorbate 2%.

    Treating for gut dysbiosis.(This is helping).
    Previous GAPS diet. Have now introduced lots of fibre.
    Fermented Foods. Intermittent fasting -16-18 hours.
    Oral Colostrum. Helps reduce food reactions.

    Comment


    • #3
      I am curious as to whether anyone has ever tried using ketotifen eye drops topically on their facial skin?
      I am not suggesting anyone do it, but given many people here are great experimenters, I wonder if anyone has done this?
      If so, what was the outcome?
      Previous Numerous IPL.
      Supplements: High dose Niacinamide, Vit K2, low dose Vit A. Moderate Dose Vit C, Iodine, Taurine, Magnesium. Mod- dose B's. Low dose zinc. Testing Quercetin.

      Skin Care: No Cleanser, ZZ cream mixed with Niacinamide gel 4% and LMW HA 2%, ethyl ascorbate 2%.

      Treating for gut dysbiosis.(This is helping).
      Previous GAPS diet. Have now introduced lots of fibre.
      Fermented Foods. Intermittent fasting -16-18 hours.
      Oral Colostrum. Helps reduce food reactions.

      Comment


      • #4
        Unfortunately I have had to discontinue the ketotifen.
        I learned a long time ago, it is foolhardy to press on with a treatment when symptoms increase.

        My flushing has been reactivated in areas which have not been an issue in a long time.
        I flush at the slightest heat now and with facial movements. Even just sitting still increases baseline redness. There have also been a number or episodes where I feel really overheated and flush, as one might associate with menopausal flushing.
        In addition, I have developed bloating and muscular pains.

        Ketotifen interacts with the Beta2 adrenergic receptor and currently, (unless I discover otherwise), I am going to blame this feature for my increased flushing and baseline redness.

        I wanted to stop it now before it causes irreversible changes, and uncontrollable flushing, as I have seen happen many times in members here who dabble in antidepressants and/or BP medication.
        As it stands, this is going to require a month or more to settle down, I imagine.

        Oh an interesting note, retinoids also interact with this receptor, and TRPV1 and when supplementing with moderate to higher doses of Vitamin A, I experience almost identical symptoms.
        This may also explain, in part, the horrific flushing caused by accutane (in some patients).

        If anyone has anything additional to add to my above ponderings of the mechanisms, please post your theories.
        Previous Numerous IPL.
        Supplements: High dose Niacinamide, Vit K2, low dose Vit A. Moderate Dose Vit C, Iodine, Taurine, Magnesium. Mod- dose B's. Low dose zinc. Testing Quercetin.

        Skin Care: No Cleanser, ZZ cream mixed with Niacinamide gel 4% and LMW HA 2%, ethyl ascorbate 2%.

        Treating for gut dysbiosis.(This is helping).
        Previous GAPS diet. Have now introduced lots of fibre.
        Fermented Foods. Intermittent fasting -16-18 hours.
        Oral Colostrum. Helps reduce food reactions.

        Comment


        • #5
          Currently I am taking the full dose 1mg twice daily.
          I still feel sedated, so if this doesn't wear off, I won't be continuing with the trial.
          I was sitting pondering ketotifen recently and realised I had made a mistake in one of my posts.
          I stated I was taking 1mg twice daily.
          I meant to say, I was taking the full dose of 1mg, but split it, taking 0.5mg twice daily.
          Sorry for the confusion.

          I have run another couple of trials with just half a dose at night, and whilst this is more tolerable, eventually it makes me flush more to all triggers.
          It certainly seems to be vasodilating and as I have a lot of collateral damage in my face, ie angiogenesis, and many telangiectasia, it doesn't take much for these to dilate.
          There is also the possibility that I am intolerant to the drug.

          Of note, I am having some luck with Quercetin. Reduction of symptoms. Not a full resolution.
          Previous Numerous IPL.
          Supplements: High dose Niacinamide, Vit K2, low dose Vit A. Moderate Dose Vit C, Iodine, Taurine, Magnesium. Mod- dose B's. Low dose zinc. Testing Quercetin.

          Skin Care: No Cleanser, ZZ cream mixed with Niacinamide gel 4% and LMW HA 2%, ethyl ascorbate 2%.

          Treating for gut dysbiosis.(This is helping).
          Previous GAPS diet. Have now introduced lots of fibre.
          Fermented Foods. Intermittent fasting -16-18 hours.
          Oral Colostrum. Helps reduce food reactions.

          Comment


          • #6
            Originally posted by Mistica View Post
            I was sitting pondering ketotifen recently and realised I had made a mistake in one of my posts.
            I stated I was taking 1mg twice daily.
            I meant to say, I was taking the full dose of 1mg, but split it, taking 0.5mg twice daily.
            Sorry for the confusion.

            I have run another couple of trials with just half a dose at night, and whilst this is more tolerable, eventually it makes me flush more to all triggers.
            It certainly seems to be vasodilating and as I have a lot of collateral damage in my face, ie angiogenesis, and many telangiectasia, it doesn't take much for these to dilate.
            There is also the possibility that I am intolerant to the drug.

            Of note, I am having some luck with Quercetin. Reduction of symptoms. Not a full resolution.
            That's too bad about the ketotifen. Unfortunately it seems like anything even presumably helpful things can be unhelpful for some of us. ketotifen seems to be used in solid edema sometimes when paired with accutane in papers. (but never helpful on its own for solid edema)

            I was going to bring this up to my doc so thanks for sharing. I get no benefit from Quercetin but glad you do.

            Comment


            • #7
              ive just started a 3 month trial of ketotifen - 1mg x 2 daily

              after a few days i didnt have my usual 1pm flush at work for 2 days running which is unusual ... im now working nights and normally flush sometime after midnight but tonight i didnt .

              cautiously optomistic going forward , if anything works it must be the mast cell stabalizing properties because antihistamines normally do nothing for me ...

              Comment


              • #8
                Originally posted by boris View Post
                ive just started a 3 month trial of ketotifen - 1mg x 2 daily

                after a few days i didnt have my usual 1pm flush at work for 2 days running which is unusual ... im now working nights and normally flush sometime after midnight but tonight i didnt .

                cautiously optomistic going forward , if anything works it must be the mast cell stabalizing properties because antihistamines normally do nothing for me ...
                How did you get it? Are you in US? That's great so far.

                Comment


                • #9
                  Originally posted by laser_cat View Post
                  How did you get it? Are you in US? That's great so far.
                  im in the uk , ordered it from united pharmacies - it comes from hong kong i think .

                  Comment


                  • #10
                    Originally posted by laser_cat View Post
                    That's too bad about the ketotifen. Unfortunately it seems like anything even presumably helpful things can be unhelpful for some of us. ketotifen seems to be used in solid edema sometimes when paired with accutane in papers. (but never helpful on its own for solid edema)

                    I was going to bring this up to my doc so thanks for sharing. I get no benefit from Quercetin but glad you do.
                    I tried quercetin years ago and it worsened my flushing and also caused significant headaches and body tingling/buzzing.

                    This time it caused a headache initially and perhaps some minor increased redness, but over the next 10 to 14 days, this wore off and I felt I was experiencing less food reactions. I do worry about taking this long term though as there have been a few worrying findings in studies. Reducing a type of collagen and interfering with thyroid function. Given I have Hashimoto's that can't be a good thing.

                    I saw my immunologist again on Friday and he was keen for me to keep testing ketotifen even at a quarter dose. ie. 0.25mg.
                    Given I am extremely sensitive to most drugs and some supplements, requiring much lower doses than the average person, I could try a lower dose of Ketotifen and see what happens.

                    Just returning to my changed reaction to Quercetin for a moment.

                    Years ago, Prof Ayers told me that our gut flora determines our diet, ... meaning it will determine what types of reactions we have. This also applies (to a degree) to drugs.
                    If we are able to modify out gut flora our reactions will change.
                    Perhaps this is the case with my reaction to Quercetin?
                    I have recently had an improved reaction to Codeine as well, which I required for dental surgery.
                    In 2013, when I also took just one dose for dental surgery it lit me up like a lamp. I also became very dizzy.

                    Of course it is possible I still have the potential to have extreme reactions, but my current dietary, and supplemental regime mask it. Just speculating.

                    Still on the same topic.

                    Have you ever heard of Prof Tim Spector? He works at King's College London.
                    He has a great interest in the Microbiome and recently I have been looking at a number of his youtube presentations. In these, he discusses how different foods and drugs cause different reactions in different people.

                    If you try Ketotifen, I hope it helps you.
                    The best it did for me at the higher dose was reduce overnight flushing. During the day it reactivated central face flushing and eventually I was flashing on and off like a neon sign.
                    This drug slows metabolism. Again, not a good mix with Hashimoto's.
                    Previous Numerous IPL.
                    Supplements: High dose Niacinamide, Vit K2, low dose Vit A. Moderate Dose Vit C, Iodine, Taurine, Magnesium. Mod- dose B's. Low dose zinc. Testing Quercetin.

                    Skin Care: No Cleanser, ZZ cream mixed with Niacinamide gel 4% and LMW HA 2%, ethyl ascorbate 2%.

                    Treating for gut dysbiosis.(This is helping).
                    Previous GAPS diet. Have now introduced lots of fibre.
                    Fermented Foods. Intermittent fasting -16-18 hours.
                    Oral Colostrum. Helps reduce food reactions.

                    Comment


                    • #11
                      Time for a quick update.

                      After a break, I have been testing Ketotifen again. At 0.5mg, which is half the dose I was originally prescribed.

                      I seem to be tolerating it well.

                      It is also worth noting, I am under extreme stress at the moment. My elderly demented mother suffered a heart attack four days ago, and we might lose her. I was present for a potentially life threatening event yesterday and my stress levels were through the roof.

                      I barely flushed. I am also reacting less to foods and I am not flushing severely during the night. I have been having less than four hours sleep, which would usually result in constant flushing. So far, so good, but I expect I will reach my threshold if I keep going like this.

                      The hospital lights and chemicals in the air etc also did not seem to be too much of a problem.

                      Heat is still a major trigger however, although it may have been somewhat dulled recently. Not sure of that at this stage.

                      I realise it has only been a week back on the drug, but my current situation is really pushing the limits of my usual triggers.

                      No facial swelling or puffiness either.

                      Not the type of experiment had anticipated running... but thought it was definitely worth sharing with others here.

                      I do wonder if once the adrenalin of stress leaves my system, I might suffer a massive flushing rebound. Time will tell.
                      Previous Numerous IPL.
                      Supplements: High dose Niacinamide, Vit K2, low dose Vit A. Moderate Dose Vit C, Iodine, Taurine, Magnesium. Mod- dose B's. Low dose zinc. Testing Quercetin.

                      Skin Care: No Cleanser, ZZ cream mixed with Niacinamide gel 4% and LMW HA 2%, ethyl ascorbate 2%.

                      Treating for gut dysbiosis.(This is helping).
                      Previous GAPS diet. Have now introduced lots of fibre.
                      Fermented Foods. Intermittent fasting -16-18 hours.
                      Oral Colostrum. Helps reduce food reactions.

                      Comment


                      • #12
                        Originally posted by Mistica View Post
                        Time for a quick update.

                        After a break, I have been testing Ketotifen again. At 0.5mg, which is half the dose I was originally prescribed.

                        I seem to be tolerating it well.

                        It is also worth noting, I am under extreme stress at the moment. My elderly demented mother suffered a heart attack four days ago, and we might lose her. I was present for a potentially life threatening event yesterday and my stress levels were through the roof.

                        I barely flushed. I am also reacting less to foods and I am not flushing severely during the night. I have been having less than four hours sleep, which would usually result in constant flushing. So far, so good, but I expect I will reach my threshold if I keep going like this.

                        The hospital lights and chemicals in the air etc also did not seem to be too much of a problem.

                        Heat is still a major trigger however, although it may have been somewhat dulled recently. Not sure of that at this stage.

                        I realise it has only been a week back on the drug, but my current situation is really pushing the limits of my usual triggers.

                        No facial swelling or puffiness either.

                        Not the type of experiment had anticipated running... but thought it was definitely worth sharing with others here.

                        I do wonder if once the adrenalin of stress leaves my system, I might suffer a massive flushing rebound. Time will tell.
                        So sorry for your mother <3 Sending thoughts for peace and comfort your way.

                        I am glad it helped you so far. keep up the updates ... but take care of yourself first xx

                        I'm on the fence about getting ketotifen online ... I would preferably want a doc to rx. I do know nasalcrom helps the inflammation in the bridge of my nose and nearby (particularly noticeable if i use it before i cry!), so hoping ketotifen would help me similarly (but for entire face)
                        Last edited by laser_cat; 21 February 2021, 02:13 AM.

                        Comment


                        • #13
                          Originally posted by boris View Post
                          ive just started a 3 month trial of ketotifen - 1mg x 2 daily

                          after a few days i didnt have my usual 1pm flush at work for 2 days running which is unusual ... im now working nights and normally flush sometime after midnight but tonight i didnt .

                          cautiously optomistic going forward , if anything works it must be the mast cell stabalizing properties because antihistamines normally do nothing for me ...
                          How are you doing with the ketotifen Boris?

                          My doc just called in an rx to a compounding pharm nearby.

                          Thanks.

                          Comment


                          • #14
                            Originally posted by laser_cat View Post
                            How are you doing with the ketotifen Boris?

                            My doc just called in an rx to a compounding pharm nearby.

                            Thanks.
                            cant say its made any difference to my flushing episodes at all really im afraid . im now on the keto diet (no carbs ) and have stopped taking propecia for hair loss to see if my testosterone levels are low and causing the flushing ...

                            so far ive had fairly positive results with the random flushes but im still bad with large meals at the end of the day .

                            Comment


                            • #15
                              I should have updated my more recent experience with oral ketotifen. Sorry for the delay.

                              Firstly, of importance, my elderly mother survived her mild heart attack and came home after a week. That week in hospital did more damage to her than the heart attack, which left little or perhaps no damage to her heart.

                              I was able to navigate the hospital environment due to the ketotifen, and felt quite confident I could continue with it at the 0.5mg dose, however, all good things come to an end.
                              About 3 weeks later, I started to suffer rebound flushing and inflammation and it became significant.
                              I foolishly quit the drug cold turkey and initially thought the rebound would be mild and I carried on with my day with precautions, but it increased to the point I was crippled for a couple of weeks.

                              Thank goodness for ZZ cream. I increased my application so that my skin became very dry and acted as a brace to the vasodilation which would have induced additional baseline redness and telangiectasia. Ultimately I did suffer an increase of the latter on my right upper to mid outer cheek and it bothers me a lot.

                              I was also having one cup of cold coffee each morning in conjunction with the ketotifen to help control the rebound I had experienced with a higher dose. Upon quitting the ketotifen, this became two, then three.
                              I am now addicted to caffeine, something I swore would never happen again, as that too causes rebound flushing.
                              I would have to say, this current addiction is easier to manage than the previous one, and I attribute that to the supplements I take and to a less aggressive disease state over all.

                              When my mother was discharged she was in a poor state due to hospital induced additional problems. She was weak, disorientated and had to be rehabilitated.
                              It is a tough job at times and I had to manage my flushing in the best way I could in order to cope with her.

                              Ketotifen eventually caused me insomnia too and a return of muscular aches.

                              I may try a 0.25 dose in the future, but haven't really decided yet.

                              If I hadn't have taken Ketotifen I am doubtful I would have managed to navigate the hospital environment, so it was helpful.
                              But everything seems to come at a price for me.

                              If someone is suffering from uncontrollable flushing and or edema, I would probably still suggest it might be worth a trial, but at the lowest effective dose.
                              Previous Numerous IPL.
                              Supplements: High dose Niacinamide, Vit K2, low dose Vit A. Moderate Dose Vit C, Iodine, Taurine, Magnesium. Mod- dose B's. Low dose zinc. Testing Quercetin.

                              Skin Care: No Cleanser, ZZ cream mixed with Niacinamide gel 4% and LMW HA 2%, ethyl ascorbate 2%.

                              Treating for gut dysbiosis.(This is helping).
                              Previous GAPS diet. Have now introduced lots of fibre.
                              Fermented Foods. Intermittent fasting -16-18 hours.
                              Oral Colostrum. Helps reduce food reactions.

                              Comment

                              Working...
                              X