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Botox helping my flushing (!)

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  • #16
    Originally posted by laser_cat View Post
    I just got a prescription for plaquenil. Thanks for the tip, antwantsclear.

    (I will start after bloodwork and eye exam.)

    I am still hopeful about switching from clonidine -> moxonidine at some point (the derm I saw did not have knowledge about moxonidine).

    Finally, the derm really suggested I retry propranolol and gabapentin (one at a time for at least 4 weeks) that she has the most luck with those 2 drugs for severe flushing cases. I'm game I guess, but each time I've tried propranolol I find I'm crying half the day LOL for no reason.

    Still maintaining the progress from the botox, except I find I need to sleep a bit upright for ~1 day near ovulation.

    //Lizzy.
    Keep me
    Updated. I may have to change my meds as clonidine, carvedilol and mirtazapine are not stopping my flushing. Have made it more manageable but it's still there


    Sent from my iPhone using Tapatalk

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    • #17
      Originally posted by antwantsclear View Post
      Moxonodine has relatively few side effects - especially severe ones, whereas the anti malarials do carry potential side effects. The main possible risk with hydroxychloroquine in long term use is potential vision problems. So yes you definitely need to weigh up the side effects and look out for any side effects if you decide to take them. Mepacrine doesn't seem to carry the vision side effect but is less effective (and harder to get from a pharmacy).
      Hi ants --

      I was wondering if you had experience with plaquenil? I've been on it for 3-4 weeks now, and for the past week I think the flushing/burning is a bit worse ... I've read on the forum that some others had this initial worsening and improved later. I'm on 24,000 mg total / week.

      I'm a bit concerned since plaquenil seems to dampen immune response / lower autoimmune issues and particularly help accutane-induced flushing. But I've never been on accutane, and my inflammatory markers (like C reactive protein) are all normal, if not under-range....

      Of course my recent worsening could be due to something else entirely!

      Thanks for your input,

      Best,

      Lizzy

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      • #18
        Originally posted by laser_cat View Post
        Hi ants --

        I was wondering if you had experience with plaquenil? I've been on it for 3-4 weeks now, and for the past week I think the flushing/burning is a bit worse ... I've read on the forum that some others had this initial worsening and improved later. I'm on 24,000 mg total / week.

        I'm a bit concerned since plaquenil seems to dampen immune response / lower autoimmune issues and particularly help accutane-induced flushing. But I've never been on accutane, and my inflammatory markers (like C reactive protein) are all normal, if not under-range....

        Of course my recent worsening could be due to something else entirely!

        Thanks for your input,

        Best,

        Lizzy
        Hi Lizzy

        I definitely would not give up yet. My experience of plaquenil and others' I've read is that it's often between weeks 8-12 that the best results start to show. Plaquenil is an anti-parasitic so in this sense may have some benefit on the demodex mites as well (but I've not seen clear research on this).

        Other things you can do to maximise the benefits of taking plaquenil would be to use Soolantra cream at the same time or ideally a mix of almond oil/tea tree oil (ratio 4:1) each day to address the mites and just give your skin the best topical treatment possible. Also, and this may seem minor but made a massive change for me, you can avoid showers and putting tap water on your face, taking baths where you don't submerge your head instead but keep it dry. I wash my hair over the sink so the water doesn't touch the face with the shower head, and wash the rosacea affected areas of the face only with mineral water. Although plaquenil can be very helpful for some with rosacea, addressing the topical side as well is important.

        Additionally diet (reducing sugars, and in particular eliminating grains if possible, especially flour/gluten) will have a big benefit.

        To me really there are four aspects to treating rosacea: medical (e.g. oral drugs and creams), alternative medicines/nutrition (e.g. tea tree oil, diet and supplements), topical (e.g. the right water to wash rosacea affected areas and cleanser, if any) and psychological (e.g. a specialist clinical psychologist with an interest in dermatology who can support you through). These things all work in synch with a greater impact than using only one or two of the options (even the most powerful individual options such as plaquenil have limitations when used in isolation).
        Last edited by antwantsclear; 24 August 2017, 11:43 PM.

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        • #19
          Hydroxychloroquine will work best with clonidine OR moxonidine if your flushing is bad, as each performs a different function, the first having an anti-inflammatory impact and the second two being blood pressure medications. The hydroxychloroquine should essentially make your blood vessels look less swollen/reduce facial redness and moxonodine or clonidine reduces the blood pressure (e.g. the pressure of blood to the face/extent of the blood flow at certain times of the day that cause the flushing in response to diet or other triggers).

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          • #20
            Originally posted by antwantsclear View Post
            Hi Lizzy

            I definitely would not give up yet.
            Thanks for your encouraging + thorough response ants! Will definitely keep on the plaquenil, I was just a bit worried!

            I'm still on the clonidine & have been able to resume therapy since I don't need to be near a freezer 24/7 anymore :p I'll think about retrying soolantra & diet changes to see if the combination of everything has an impact

            Thanks again, and I'd bet you know more about this stuff than most derms out there ha.

            //Lizzy

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            • #21
              Just want to update this - I had been getting botox every 3 months for the past 1.5 years. Recently I skipped my usual appt (unimportant reason), and I'd say 4 months after my last, my evening burning really deteriorated again. I have the same pulsing, pounding, sensation that I believe is more nerve based + reflects small fiber neuropathy (and less so blood vessel instability .. although this might be the unfortunate result). Comes out of the blue at night (can go from a 0 to a 10 in a few seconds), and all I can do is wait it out.

              I am trying to get another appt ASAP. But I def. took for granted how much the botox was helping me. I think it was quieting the neurogenic inflammation / making the sensory nerves less likely to spontaneously fire + dump their inflammatory / dilatory stuffs (?)

              It doesn't help much with social flushing, but a lot with the evening burning/flushing. THis was my observation when I started having it done, too.
              Last edited by laser_cat; 18 September 2018, 02:12 AM.

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              • #22
                I agree botox can be very helpful as long as you have a really good doctor to inject it that understands rosacea well. The main problem is if they hit larger blood vessels. The Accuvein is a good new tool available to help the injector either find or avoid veins (clearly in the case of rosacea the injector should be trying to avoid the veins!).

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                • #23
                  Originally posted by antwantsclear View Post
                  I agree botox can be very helpful as long as you have a really good doctor to inject it that understands rosacea well. The main problem is if they hit larger blood vessels. The Accuvein is a good new tool available to help the injector either find or avoid veins (clearly in the case of rosacea the injector should be trying to avoid the veins!).
                  Thanks ants - never heard of accuvein. I'll ask my derm about it Yeah, I agree about that not hitting hte veins is important .. I am a little nervous each time about that! It actually concerns me much more than the pain of the needle poking...

                  Botox for me has helped more than most oral medication, actually.

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                  • #24
                    Originally posted by antwantsclear View Post
                    I agree botox can be very helpful as long as you have a really good doctor to inject it that understands rosacea well. The main problem is if they hit larger blood vessels. The Accuvein is a good new tool available to help the injector either find or avoid veins (clearly in the case of rosacea the injector should be trying to avoid the veins!).
                    Ants - Curious if you've used "aquagold" or a similar needle before? I think it might be able to provide a more uniform delivery of botox, without risking any paralysis of the muscles (ensuring it is shallow enough)

                    Thanks!

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                    • #25
                      I'm very interested in trying botox for redness and burning sensation. I am wondering what the costs are, can somebody comment on that?

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                      • #26
                        Originally posted by joshuaweismann View Post
                        I'm very interested in trying botox for redness and burning sensation. I am wondering what the costs are, can somebody comment on that?
                        botoxcost.jpg

                        HOW MUCH DOES BOTOX COST?, USA today
                        Brady Barrows
                        Blog - Join the RRDi


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                        • #27
                          I just want to come back and update this.

                          I don't do botox anymore. I did get it for a couple yrs full face, lots of little injections but do not think it is worthwhile overall at least in my case. The trauma each round is something to consider (although I find it less "traumatic" than laser). There is high upkeep and it did not help in an overall way - ie did not help my anxiety flushing at all (basically every time I had a thought..). Botox was a badaid at best although I was very fortunate for the botox benefit while I was doing it.

                          My opinion is it is more worthwhile to treat and treat the inflammation, or at the least try for oral medication (nerve, inflammation, vasoactive). For me I think inflammation was irritating the nerves (lymphatics imbalance?) and the nerve flushing was in some ways a productive response to said inflammation. What is helping my night flushing now is cymbalta BID and what is helping my anxiety flushing now is 200 mg doxy. I've just signed papers for low dose accutane and might try that too.

                          At my last appt with botox - the doctor admitted he hoped it would be a temporary solution before we found a more permanent one.
                          Last edited by laser_cat; 7 December 2020, 08:39 PM.

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                          • #28
                            Originally posted by laser_cat View Post
                            I just want to come back and update this.

                            I don't do botox anymore. I did get it for a couple yrs full face, lots of little injections but do not think it is worthwhile overall at least in my case. The trauma each round is something to consider (although I find it less "traumatic" than laser). There is high upkeep and it did not help in an overall way - ie did not help my anxiety flushing at all (basically every time I had a thought..). Botox was a badaid at best although I was very fortunate for the botox benefit while I was doing it.

                            My opinion is it is more worthwhile to treat and treat the inflammation, or at the least try for oral medication (nerve, inflammation, vasoactive). For me I think inflammation was irritating the nerves (lymphatics imbalance?) and the nerve flushing was in some ways a productive response to said inflammation. What is helping my night flushing now is cymbalta BID and what is helping my anxiety flushing now is 200 mg doxy. I've just signed papers for low dose accutane and might try that too.

                            At my last appt with botox - the doctor admitted he hoped it would be a temporary solution before we found a more permanent one.
                            That's really interesting that the doxycycline is helping you- I started on 50 mg/day last Thursday and it's too early to really report back, but I actually felt like it helped from the first day I took it (not sure that's even possible, but that's my experience so far). Hydroxychloroquine (which is also anti-inflammatory) has been the only other med so far that helped significantly so I think inflammation is a big part of my flushing issue as well. Ever since I did a series of IPL last year I've had edema that never completely goes away- the hydroxy. and doxy have helped with that and I hope that the doxy continues to help.

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                            • #29
                              Originally posted by Jamoverton View Post
                              That's really interesting that the doxycycline is helping you- I started on 50 mg/day last Thursday and it's too early to really report back, but I actually felt like it helped from the first day I took it (not sure that's even possible, but that's my experience so far). Hydroxychloroquine (which is also anti-inflammatory) has been the only other med so far that helped significantly so I think inflammation is a big part of my flushing issue as well. Ever since I did a series of IPL last year I've had edema that never completely goes away- the hydroxy. and doxy have helped with that and I hope that the doxy continues to help.
                              Yeah I think it's super interesting too. I know someone whose flushing (post-facial?) was cured with 50 mg doxy (!) What!?!?
                              I have severe severe flushing so oracea didn't do anything but i have a doc now who realizes at least i need to be maxing out these drugs in terms of doses. So I'm on 200 mg doxy. I noticed a difference with the first couple doses but it has plateaued. I'm all set up to trial low dose accutane. Because the doxy indicates inflammatory rosacea pathology as per my doc which indicates accutane could help + be more powerful.
                              I read somewhere on how the lymphatics might get impaired or overwhelmed from trauma. No one really knows yet how the lymphatics work but have been reading about it and really think that's the underlying root of a lot of rosacea (not able to heal possibly due to already overwhelmed lymphatics..) including ear burning.

                              Anyway hope the doxy continues to help. I'm sorry that happened to you after IPL's.


                              I'll come back to post accutane and what my results are. I was diagnosed with neuro rosacea but actually think I'm heading into Morbihan's (very subtle) - full dose doxy and accutane (more so accutane) being the mainstay treatments to help lymph drainage. unfortunately i have can't take doxy and accutane together. I was told doxy peaks in a couple months as far as efficacy.

                              Why the F was I never rx'ed full dose doxy ... oh man. On doxy I can have a conversation and not flush or get hot. My doc told me I am going to take 100 mg doxy for life (I guess after accutane or independent of accutane) because i think he thinks it might slow down any progression. And I'm more than happy to do so honestly.
                              Last edited by laser_cat; 9 December 2020, 08:21 PM.

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                              • #30
                                Originally posted by laser_cat View Post
                                Yeah I think it's super interesting too. I know someone whose flushing (post-facial?) was cured with 50 mg doxy (!) What!?!?
                                I have severe severe flushing so oracea didn't do anything but i have a doc now who realizes at least i need to be maxing out these drugs in terms of doses. So I'm on 200 mg doxy. I noticed a difference with the first couple doses but it has plateaued. I'm all set up to trial low dose accutane. Because the doxy indicates inflammatory rosacea pathology as per my doc which indicates accutane could help + be more powerful.
                                I read somewhere on how the lymphatics might get impaired or overwhelmed from trauma. No one really knows yet how the lymphatics work but have been reading about it and really think that's the underlying root of a lot of rosacea (not able to heal possibly due to already overwhelmed lymphatics..) including ear burning.

                                Anyway hope the doxy continues to help. I'm sorry that happened to you after IPL's.


                                I'll come back to post accutane and what my results are. I was diagnosed with neuro rosacea but actually think I'm heading into Morbihan's (very subtle) - full dose doxy and accutane (more so accutane) being the mainstay treatments to help lymph drainage. unfortunately i have can't take doxy and accutane together. I was told doxy peaks in a couple months as far as efficacy.

                                Why the F was I never rx'ed full dose doxy ... oh man. On doxy I can have a conversation and not flush or get hot. My doc told me I am going to take 100 mg doxy for life (I guess after accutane or independent of accutane) because i think he thinks it might slow down any progression. And I'm more than happy to do so honestly.

                                That's super informative, thanks for this! I'll be really interested to hear how your trial with low-dose accutane goes.

                                I'm going to check out more about Morbihan's as it does seem related- I've always felt that the swelling/edema I have causes my flushing (and not the other way around) for some reason. Whenever I recline (on the couch or in bed) it can trigger a flush, which seems to be caused by lymphatic fluid buildup not draining as properly as it does when I'm standing- that's my theory anyway!

                                I'm going to ask about a higher dose of doxy to see if that helps- I'm still doing better on the 50 mg/day but I wonder if I can increase my results.

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