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  • #16
    Mistica, did your skin deteriorate from the use of the protective face masks by any chance?
    No, I have never worn a mask and never will. I wouldn't be able to tolerate it at all, as I am very heat intolerant. I can't even bend my head too near my shoulder during the night as my face ignites. I have somehow managed to train myself to sleep on my bed with head facing the ceiling (in general), but it does tilt now and then. I keep an esky of covered icepacks on my side table, which I have to use most nights for various periods of time.
    A prompt icepack application has many benefits. Shutting down the flushing and prevention of capillaries expanding beyond the point of no return. Also, cooling the skin improves metabolic function.
    But I digress....

    My flushing has worsened due to the following.

    Between September last year and now, I have undergone a number of dental procedures.
    I've had two infections in the jaw, several extractions (including lower wisdom teeth), lost an implant (only 3 months old) and had four rounds of amoxicillin.

    In between all this, my mother had a mild heart attack in mid Feb, which didn't harm the heart, thank goodness. However she has dementia and the week in hospital and less than ideal care caused her further neurological damage.
    I had to rehabilitate her at home. Stressful. Whilst she was in hospital, I took Ketotifen, a mast cell stabiliser, prescribed by my immunologist, to help me navigate all the triggers in the hospital. I am a bad flusher. It worked very well... until rebound set in around one week later. Major rebound. I foolishly quit it cold turkey, not realising I could be addicted in such a short time, making the rebound even worse!!. Rebound flushing and also a return of baseline redness. I had also taken the ketotifen sporadically over the previous three months or less and decided it wasn't for me, but when mum ended up in hospital, I decided to try it again, daily.

    It took about 3 to 4 weeks for things to start settling down, and then I developed the first dental infection in lower jaw.

    As I was recovering from that, I developed signs of infection in the upper jaw/implant. No pain however.
    Long story short, the infection turned out to be so bad and had done so much damage, I lost the implant.

    I recently had all my sutures out.

    My gut is messed up, my flushing is more frequent and more extensive in areas and I have more telangiectasia.
    Talk about being cursed.

    I wasn't going to mention all this, but decided to, because the question I have is, can mast cell stabilisers promote infection?
    I have done some googling and the literature suggests it can, but I can't find a lot of information.
    Has anyone here come across any?

    Whilst my dental problems have nothing to do with rosacea/flushing, my negative experience with this mast cell stabiliser begs the question, can they, and also anti histamines alter the antimicrobial response in our faces?
    Many people take them. I used to take zyrtec for years and became worse as time went by. Ok, Zyrtec wasn't the only suspect, but could it have been part of the problem?
    Mast cells are required for many functions including addressing infections.
    I imagine many people would immediately think of the bacteria carried by demodex, and yes, that is a consideration, but skin has it's own flora, which has been shown to be imbalanced in rosaceans.
    What effect if any, do mast cell stabilisers and anti histamines have on skin flora and gut flora and our response to them long term?

    Any thoughts?
    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


    • #17
      Have you tried elidel or protopic by chance? curious if those made you burn too. I know people as bad as me who can tolerate them, which surprises me a lot.
      I haven't tried them.
      I can't tolerate any lotion or potion, barring my topical gel which contains 4% niacinamide, 2% LMW HA, and 2% Ethyl Asorbate (non irritating form of vitamin C).
      The vehicle is a Hydroxyethylcellulose gel base.
      It is very basic. Compounded.

      What worked for me to take the wind out of my 'flushing sails' and to reduce the facial edema was mega doses of oral vitamin C. To the point of causing significant diarrhea.
      I believe it worked due to lessening the abnormal gut flora and also systemically.

      I suspect IV vitamin C could potentially work for you. It would be much safer than the drugs you have tried, or are planning to try.
      I realise Americans have insurance companies governing their lives and can make getting treatments very difficult, but I wondered if you had discussed this option with any of your current physicians?

      I felt the swelling and flushing just melt away. I couldn't believe it. It had to be maintained on a daily basis for a period of time, however, but eventually, things improved and improvements were lasting.

      Vitamin C can cause redness and it did with me, but it was more of a transient superficial redness, rather than burning hot, pulsating engorgement.
      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


      • #18
        Originally posted by Mistica View Post
        No, I have never worn a mask and never will. I wouldn't be able to tolerate it at all, as I am very heat intolerant. I can't even bend my head too near my shoulder during the night as my face ignites. I have somehow managed to train myself to sleep on my bed with head facing the ceiling (in general), but it does tilt now and then. I keep an esky of covered icepacks on my side table, which I have to use most nights for various periods of time.
        A prompt icepack application has many benefits. Shutting down the flushing and prevention of capillaries expanding beyond the point of no return. Also, cooling the skin improves metabolic function.
        But I digress....

        My flushing has worsened due to the following.

        Between September last year and now, I have undergone a number of dental procedures.
        I've had two infections in the jaw, several extractions (including lower wisdom teeth), lost an implant (only 3 months old) and had four rounds of amoxicillin.

        In between all this, my mother had a mild heart attack in mid Feb, which didn't harm the heart, thank goodness. However she has dementia and the week in hospital and less than ideal care caused her further neurological damage.
        I had to rehabilitate her at home. Stressful. Whilst she was in hospital, I took Ketotifen, a mast cell stabiliser, prescribed by my immunologist, to help me navigate all the triggers in the hospital. I am a bad flusher. It worked very well... until rebound set in around one week later. Major rebound. I foolishly quit it cold turkey, not realising I could be addicted in such a short time, making the rebound even worse!!. Rebound flushing and also a return of baseline redness. I had also taken the ketotifen sporadically over the previous three months or less and decided it wasn't for me, but when mum ended up in hospital, I decided to try it again, daily.

        It took about 3 to 4 weeks for things to start settling down, and then I developed the first dental infection in lower jaw.

        As I was recovering from that, I developed signs of infection in the upper jaw/implant. No pain however.
        Long story short, the infection turned out to be so bad and had done so much damage, I lost the implant.

        I recently had all my sutures out.

        My gut is messed up, my flushing is more frequent and more extensive in areas and I have more telangiectasia.
        Talk about being cursed.

        I wasn't going to mention all this, but decided to, because the question I have is, can mast cell stabilisers promote infection?
        I have done some googling and the literature suggests it can, but I can't find a lot of information.
        Has anyone here come across any?

        Whilst my dental problems have nothing to do with rosacea/flushing, my negative experience with this mast cell stabiliser begs the question, can they, and also anti histamines alter the antimicrobial response in our faces?
        Many people take them. I used to take zyrtec for years and became worse as time went by. Ok, Zyrtec wasn't the only suspect, but could it have been part of the problem?
        Mast cells are required for many functions including addressing infections.
        I imagine many people would immediately think of the bacteria carried by demodex, and yes, that is a consideration, but skin has it's own flora, which has been shown to be imbalanced in rosaceans.
        What effect if any, do mast cell stabilisers and anti histamines have on skin flora and gut flora and our response to them long term?

        Any thoughts?
        I am not sure about the stabilizer, but I think that the implants can cause myriads of problems and one of them could be facial skin infection with mouth bacteria. My rosacea first started when my teeth started to decay, I had to root some of them and then pull them out and put two implants. How did you realize that your implants were infected? This is sth that I have to check out too, because they can also have caused my current pancreatitis.

        Comment


        • #19
          Originally posted by hotanddangerous View Post
          Have you found anything to help your swelling yet?
          No I have not. I went to another derm last week who would not prescribe me low dose accutane. Tried to convince me that the edema is just the fat in my face migrating south with age. Derms are a total waste of time and money for me. They have done nothing to help over the years.
          So frustrating. I wonder if I doubled my intake of Duloxetine and performed lymphatic massage every day, would it get things moving again?
          I must look into Vitamin C.

          Comment


          • #20
            How much of a mega-dose did you take?
            Originally posted by Mistica View Post
            I haven't tried them.
            I can't tolerate any lotion or potion, barring my topical gel which contains 4% niacinamide, 2% LMW HA, and 2% Ethyl Asorbate (non irritating form of vitamin C).
            The vehicle is a Hydroxyethylcellulose gel base.
            It is very basic. Compounded.

            What worked for me to take the wind out of my 'flushing sails' and to reduce the facial edema was mega doses of oral vitamin C. To the point of causing significant diarrhea.
            I believe it worked due to lessening the abnormal gut flora and also systemically.

            I suspect IV vitamin C could potentially work for you. It would be much safer than the drugs you have tried, or are planning to try.
            I realise Americans have insurance companies governing their lives and can make getting treatments very difficult, but I wondered if you had discussed this option with any of your current physicians?

            I felt the swelling and flushing just melt away. I couldn't believe it. It had to be maintained on a daily basis for a period of time, however, but eventually, things improved and improvements were lasting.

            Vitamin C can cause redness and it did with me, but it was more of a transient superficial redness, rather than burning hot, pulsating engorgement.

            Comment


            • #21
              I took 3 or 4 grams every thirty minutes over 6 hours. Totalling between 18 grams to 24 grams.
              I have taken more.

              I take two types. Ascorbic acid and Sodium ascorbate.
              Seeing Sodium ascorbate contains a lot of sodium, in general, I would take 4 grams at the beginning of the treatment and 4 grams at the end.

              Sodium has a number of benefits. It can calm an overly excited sympathetic system. It has antimicrobial effects on the gut flora. It can help stabilise blood sugar levels.
              This amount of vitamin C will cause lots of bloating and flush out the gut resulting in diarrhea.
              This was one of my aims, as I had been on broad spectrum antibiotics for 13 years!!! If only I had been under the care of a functional medicine doctor from the beginning of my health journey!

              Taking these large amounts of vitamin C is not sustainable. There has to be a follow up plan, with a lower amount of C, plus dietary modifications, attention to encouraging a healthy gut flora. Taking any other supplements which may be necessary for a period of time.

              I was astonished at how quickly my facial swelling and awful pressurised feeling subsided.
              In addition, the severe jaw pain I had been experiencing over the past 18 months reduced significantly after a couple of sessions.
              I had suffered an adverse reaction to Boswellia and a number of my joints had been affected. The jaw being the worse. I had to eat mashed food on a tsp for 18 months as I couldn't open my jaw due to right side hinge pain. I was told it was a ligament/fibrosis problem, but no one could alleviate it.
              I did not anticipate the vitamin C completely resolving this, which it did over months.

              I also experienced a feeling of euphoria during the treatment, so those who suffer from depression (which I don't), might enjoy this.

              Of note, my functional medicine doctor fully endorsed this regime seeing nothing else was working.

              I currently take 4 grams per day in divided doses.

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

              I made a couple of errors in above posts.
              My topical gel contains 1% LMW HA. Not 2%.

              Also, I use ZZ cream as well.
              I started using this a few weeks after I started the vitamin C regime and wish I had started years ago.
              It modulates nerve function in the face in addition to any anti demodex effects it supposedly has and in my opinion is the best topical available. I mix it with my gel.
              It also helps reduce the superficial redness that large doses of vitamin C can produce.

              Laser_cat, I worry about your long term use of antibiotics.
              I fully understand why you are taking them, but having been down a similar road which ended in disaster, I fear for your future. Especially given your current severe state.
              If you recall, I also took metronizadole, following my 13 years of broad spectrum types. Plus I took rifaximin and oral vancomycin.
              The metronizadole caused sudden onset neuropathy, paresthesias and the MOST HELLACIOUS FLUSHING IMAGINABLE!! This followed on from the severe adverse reaction to the other drug from hell, topical brimonidine.
              The metro helped shut down the brimonidine rebound (Mirvaso), but as time passed, it caused it's own damage, and it was worse than the brimonidine. I have never fully recovered from it. Not my face, (upper cheeks in particular).
              Metro is a neurotoxin.

              Years ago, I heard about a doctor a few hours from where I live, using IV vitamin C for rosacea patients. At the time, I couldn't understand how it could work.
              I have never tried it myself, but if given the opportunity I would probably try it. Especially if I developed edema again.
              Last edited by Mistica; 8 June 2021, 08:36 AM.
              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


              • #22
                Originally posted by Mistica View Post
                I took 3 or 4 grams every thirty minutes over 6 hours. Totalling between 18 grams to 24 grams.
                I have taken more.

                I take two types. Ascorbic acid and Sodium ascorbate.
                Seeing Sodium ascorbate contains a lot of sodium, in general, I would take 4 grams at the beginning of the treatment and 4 grams at the end.

                Sodium has a number of benefits. It can calm an overly excited sympathetic system. It has antimicrobial effects on the gut flora. It can help stabilise blood sugar levels.
                This amount of vitamin C will cause lots of bloating and flush out the gut resulting in diarrhea.
                This was one of my aims, as I had been on broad spectrum antibiotics for 13 years!!! If only I had been under the care of a functional medicine doctor from the beginning of my health journey!

                Taking these large amounts of vitamin C is not sustainable. There has to be a follow up plan, with a lower amount of C, plus dietary modifications, attention to encouraging a healthy gut flora. Taking any other supplements which may be necessary for a period of time.

                I was astonished at how quickly my facial swelling and awful pressurised feeling subsided.
                In addition, the severe jaw pain I had been experiencing over the past 18 months reduced significantly after a couple of sessions.
                I had suffered an adverse reaction to Boswellia and a number of my joints had been affected. The jaw being the worse. I had to eat mashed food on a tsp for 18 months as I couldn't open my jaw due to right side hinge pain. I was told it was a ligament/fibrosis problem, but no one could alleviate it.
                I did not anticipate the vitamin C completely resolving this, which it did over months.

                I also experienced a feeling of euphoria during the treatment, so those who suffer from depression (which I don't), might enjoy this.

                Of note, my functional medicine doctor fully endorsed this regime seeing nothing else was working.

                I currently take 4 grams per day in divided doses.

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

                I made a couple of errors in above posts.
                My topical gel contains 1% LMW HA. Not 2%.

                Also, I use ZZ cream as well.
                I started using this a few weeks after I started the vitamin C regime and wish I had started years ago.
                It modulates nerve function in the face in addition to any anti demodex effects it supposedly has and in my opinion is the best topical available. I mix it with my gel.
                It also helps reduce the superficial redness that large doses of vitamin C can produce.

                Laser_cat, I worry about your long term use of antibiotics.
                I fully understand why you are taking them, but having been down a similar road which ended in disaster, I fear for your future. Especially given your current severe state.
                If you recall, I also took metronizadole, following my 13 years of broad spectrum types. Plus I took rifaximin and oral vancomycin.
                The metronizadole caused sudden onset neuropathy, paresthesias and the MOST HELLACIOUS FLUSHING IMAGINABLE!! This followed on from the severe adverse reaction to the other drug from hell, topical brimonidine.
                The metro helped shut down the brimonidine rebound (Mirvaso), but as time passed, it caused it's own damage, and it was worse than the brimonidine. I have never fully recovered from it. Not my face, (upper cheeks in particular).
                Metro is a neurotoxin.

                Years ago, I heard about a doctor a few hours from where I live, using IV vitamin C for rosacea patients. At the time, I couldn't understand how it could work.
                I have never tried it myself, but if given the opportunity I would probably try it. Especially if I developed edema again.
                This is an extremely interesting regimen. How did your functional doctor calculate the dosage of vitamin C? What tests did he run before giving you this treatment?
                At this point, I would like to give a small piece of advice to the newly diagnosed fellow rosaceans. It?s not worth taking antibiotics for this disease. Antibiotics don?t cure it permanently anyway and they mess with the GI system to the point that you can have digestive issues for life as there are very few doctors out there competent enough to treat gut dysbiosis, pancreatic issues, nerve damage etc. Find yourself another way through the diet, topicals, essential oils, vitamin C, you name it.

                Comment


                • #23
                  Momof, I sympathize with you on doctors not willing to treat. Surely you could titrate low dose accutane and be "ok". Like I would notice within 2 doses of 2,5 mg twice a week, whether I could continue it or whether it would be a negative. I literally am doing a tour of the best derm depts in the US at this point. Currently at NYU, and UPenn would be next for me.You could ask for a biopsy to show the amount of inflammation you have. Sometimes docs seeing the inflammation under the microscope, it hits them that there is more anti-inflammatory work to do. I hope going up on the cymbalta helps you. Also, maybe if you have a "before" picture?? This seemed to help my doctors a lot, in addition to my biopsy.

                  Mistica - seems like we have a problem of rebounding from things generally. I don't know why. My goal with antibiotics was to reduce inflammation enough to tolerate low dose accutane, which felt like it sort of restructured the skin, and then to come off the antibiotics. My loose understanding is that accutane can correct some of the dermal matrix damage and hit the upstream TLR2 in rosacea. I also wonder if we have an unknown non-rosacea component in addition to rosacea. Or an unknown rosacea pathway. What one rosacea researcher wrote me - "the lack of adequate response to a single antibiotic, retinoid, or vascular agent means your rosacea pathway is not typical." My doc now wants to lower inflammation through topicals (biiiiiig assumption if he can do this with topicals?), lower abx, introduce low dose accutane. I had one "glimpse" of normalcy which felt like a water balloon exploded in each of my cheeks, and all this fluid gushed out of my nostrils and eyes, like those gates were opening again instead of being blocked by inflammation, and I could feel fluid internally rushing down the sides of my face. For half a day I could lie down, not have any cooling (in Louisiana, no less!), neck was more flexible and slimmer, and even upper back - gave me a flicker of hope. Like it was an inflammation - lymph issue in my case.

                  MariaSt - I think everyone should get 2nd and 3rd opinions about full dose non oracea antibiotics. If I were to go back in time, the topical (ivermectin, metro, finacea, dapsone, sulfur), laser, beta blockers, oracea, weren't going to make a dent on my extreme case. In my gut I feel if I were started on high dose azithromycin or something like that (flagyl is probably the worst one, with neuropathy side effects and braod-acting / harsh on the microbiome) then the flushing would have stopped, and the swelling/inflammation wouldn't have gotten this bad. It might have made the difference between working and disability. But docs aren't generally good at matching severity of patient with potency of medicatons, imo. (wanting to follow a recipe). Maybe my case isn't normal for other people. But over 5 years, now I probably need some combination of drugs, including an antibiotic, to reverse the inflammation. I believe I wasted a year on mild medicatons that never made a dent (and also gut tests, supplements, diet, skin care that never made a dent). I was rx'ed a a very high dose probiotic to take with flagyl. Although that wasn't covered, am getting a 3 trillion (?) probiotic online instead. It's a matter of a conversation between doctor and patient, discussing pros/cons and how much you are willing to sacrifice (I'm wiling to sacrifice numb feet, personally, no brainer to not look disfigured and have as much pain). Anyway my perspective of things.
                  Last edited by laser_cat; 15 June 2021, 01:27 PM.

                  Comment


                  • #24
                    Originally posted by Momof View Post

                    No I have not. I went to another derm last week who would not prescribe me low dose accutane. Tried to convince me that the edema is just the fat in my face migrating south with age. Derms are a total waste of time and money for me. They have done nothing to help over the years.
                    So frustrating. I wonder if I doubled my intake of Duloxetine and performed lymphatic massage every day, would it get things moving again?
                    I must look into Vitamin C.
                    Did you ever get to a neurology specialist?

                    Comment


                    • #25
                      Yes I had an appointment with the neurologist which was another waste of time. She told me it was a dermatology issue and when I told her that the dermatologist had said it was a neurological issue, she told me she couldn’t help me. Yet another consultant with no compassion or interest in helping a patient.

                      Comment

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