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Did people recover from Mirvaso long term rebound flushing & pain

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  • Did people recover from Mirvaso long term rebound flushing & pain

    I recently developed very mild, light flushing as an adverse reaction to antibiotics that I was prescribed, but didn't need. I went to see a dermatologist a few months after the initial antibiotic trigger. She prescribed brimonidine Mirvaso (called Onreltea in Canada). She did not tell me any side effects or adverse effects. In my search for onreltea I did not find anything. It wasn't until I had adverse effects that I found others posting about mirvaso. I used Mirvaso 3 times spaced a week apart. Ever since I started using it I have been living in a nightmare of constant pain and flushing for 7 weeks. When my flushing episode ends I return to my normal pale skin with no redness. But, the intense pain never stops, it gets worse, but never goes away. It's been 4 weeks since I last used it. I have had to go on an extremely restrictive diet in order to attempt to avoid food triggers. I am losing too much weight, I only weigh 96 pounds now. I can only eat at home because I can't eat at restaurants. I have chronic, extreme pain in my nose, and nerve pain through my jaw, and sensitive painful eyes. Sometimes the pain gets so bad that I can't even walk or think. I have had to take a break from working and I am mostly home bound at this point which is very depressing. I just want to get back to the way I was before I ever used mirvaso. I want the flushing to tone down and stop. I want the constant pain in my nose and jaw to stop, I want my eyes to stop hurting. Is there any hope that I will still be able to recover from this. It has been 4 weeks. I can't imagine living my life this way. My life as I knew it is ruined at this time. My life now revolves around this chronic condition that has been brought on by mirvaso. I'm a mother as well, and my job is/was as a dance teacher and performer. I just need to know if people recovered from the long term rebound flushing (and pain).

  • #2
    Just want to add that

    The doctors do not believe me so far.

    Comment


    • #3
      Numbness also

      I have numb tingly lips and jaw and nose. I'm obviously afraid to take more meds. Not sure if there is any way to recover from this. I hope it's temporary. I'm trying to be upbeat and happy and not stressed. I wish I had known. I wish the doctor had warned me.

      Comment


      • #4
        Hello,

        Dont loosing hope, you will found a solution

        I remember that i felt rebounds effects of mirvaso still 1mounth to 2mounth after the last apply.
        I felt some wierd felling sensations at the face. (i really dont know how to explain that)
        like my skin was burning inside but cold at the surface. swetting more, feeling like sweating (but it wasnt)
        I didnt had pain like you explain but iam pretty sure that each person should feeling and experiment some subjective pain.

        I really hope that this will go.
        I think that now you have a little anxiety, you really need to take good sleeping, work to your breathe. Dont panic (maybe take some propanolol b-blocker)

        Comment


        • #5
          Dont apply anything to your skin during 1mounth also.

          And in one mounth, hydratation cream and sunscreen

          Comment


          • #6
            Thank you!

            Originally posted by kalis View Post
            Dont apply anything to your skin during 1mounth also.

            And in one mounth, hydratation cream and sunscreen
            Thank you so much for your messages. Did you get better after two months. I hope I get better. Thanks for your advice and support. Also thank you to people that sent me messages. I am new here and still not completely sure how to use this and how to reply to messages. I'm so sad and so upset that I used this. I had no idea. I was ok. And now feel my life has been ruined and it's going to impact my children's lives. I will try to not give up hope.

            Comment


            • #7
              I agree that one of the hardest things is that we 'had no idea'. I also was given no warning of possible severe side effects, so when I first got rebound flushing I didn't recognise it for what it was, so ignored it. In fact I had been told that the longer I used the cream, the more permanent would be the blood vessel constriction, which is a complete falsehood. The total opposite is true, sadly.

              We must help get this dangerous stuff banned.

              Please make sure you write to Galderma to complain, and also to the pharmaceutical licencing authorities.

              Comment


              • #8
                I'm so sorry!

                Originally posted by EllyS View Post
                I agree that one of the hardest things is that we 'had no idea'. I also was given no warning of possible severe side effects, so when I first got rebound flushing I didn't recognise it for what it was, so ignored it. In fact I had been told that the longer I used the cream, the more permanent would be the blood vessel constriction, which is a complete falsehood. The total opposite is true, sadly.

                We must help get this dangerous stuff banned.

                Please make sure you write to Galderma to complain, and also to the pharmaceutical licencing authorities.
                Yes, your experience is exactly like mine. I didn't fully understand why suddenly my condition had escalated so much. I was even misdiagnosed with an auto-immune disease. So, I tried it again. I thought that using it would make my condition better in the long term. But, instead it has given me a much worse condition to try and live with. It has ruined my life as I knew it. I now have to build a different life of simply learning how to cope with what this topical med has done to me. I hope we can recover. I wish I had gone to a naturopath and never gone to a dermatologist. Like you said, we had no idea. But, now I can't get any doctors to help me. I'm dealing with this all on my own. Trying to deal with it. I'm making doctor appointments weekly. My life revolves around dealing with this condition and trying to have enough strength in my weakened state to go to doctor appointments trying to get a referral to a neurologist. Once I get a referral it will be a six month wait, but I can't even get a referral. I have severe trigeminal nerve pain. They don't believe me. Thank you for replying.

                Comment


                • #9
                  Yeah

                  Originally posted by kalis View Post
                  Hello,

                  Dont loosing hope, you will found a solution

                  I remember that i felt rebounds effects of mirvaso still 1mounth to 2mounth after the last apply.
                  I felt some wierd felling sensations at the face. (i really dont know how to explain that)
                  like my skin was burning inside but cold at the surface. swetting more, feeling like sweating (but it wasnt)
                  I didnt had pain like you explain but iam pretty sure that each person should feeling and experiment some subjective pain.

                  I really hope that this will go.
                  I think that now you have a little anxiety, you really need to take good sleeping, work to your breathe. Dont panic (maybe take some propanolol b-blocker)
                  The inside of my nose feels all painfully infiltrated with menthol and black pepper. It hurts to breath through my nose. I have numbness in my lips and gums. Feels all swollen in my nose. Very hard to breath. My doctor said that my nostrils are extremely narrow to begin with. The doctors have put me through hell.

                  Comment


                  • #10
                    How long did you use it?

                    Originally posted by EllyS View Post
                    I agree that one of the hardest things is that we 'had no idea'. I also was given no warning of possible severe side effects, so when I first got rebound flushing I didn't recognise it for what it was, so ignored it. In fact I had been told that the longer I used the cream, the more permanent would be the blood vessel constriction, which is a complete falsehood. The total opposite is true, sadly.

                    We must help get this dangerous stuff banned.

                    Please make sure you write to Galderma to complain, and also to the pharmaceutical licencing authorities.
                    How long did you use it? how many times did you use it? I used it 3 times, but once a week, so I used it for 2 weeks. It's been 4 weeks since I stopped, so that's 6 weeks with symptoms, but 4 weeks in recovery. The first time I used it, my nose went pale for 48 hours. Edit to add: I see that you used it for one week.
                    Last edited by TinyDancer; 27 September 2015, 04:05 PM.

                    Comment


                    • #11
                      Just wanted to say I am so sorry you have had this reaction. It makes me so angry the doctors peddle this crap and they don't even know or care about the side effects!! I have had nerve pain and weird sensations in my face (not from Mirvaso but possibly due to other pharmaceuticals) and I can empathize with how distressing it can be when you don't know if it will go away. I hope you get some relief soon. Try not to panic and believe that it is going to get better. All my facial discomfort has gone away now though it was gradual over a period of several months.

                      Comment


                      • #12
                        Thank you so much!!

                        Originally posted by lwemm View Post
                        Just wanted to say I am so sorry you have had this reaction. It makes me so angry the doctors peddle this crap and they don't even know or care about the side effects!! I have had nerve pain and weird sensations in my face (not from Mirvaso but possibly due to other pharmaceuticals) and I can empathize with how distressing it can be when you don't know if it will go away. I hope you get some relief soon. Try not to panic and believe that it is going to get better. All my facial discomfort has gone away now though it was gradual over a period of several months.
                        Thank you so much! You give me hope. Has the flushing stopped for you? So, we really can get better? It just takes a few months or so? Edit: Oh, I guess you are saying you didn't use mirvaso, but something else.
                        Last edited by TinyDancer; 27 September 2015, 05:17 PM.

                        Comment


                        • #13
                          Basically what happened is

                          Originally posted by lwemm View Post
                          Just wanted to say I am so sorry you have had this reaction. It makes me so angry the doctors peddle this crap and they don't even know or care about the side effects!! I have had nerve pain and weird sensations in my face (not from Mirvaso but possibly due to other pharmaceuticals) and I can empathize with how distressing it can be when you don't know if it will go away. I hope you get some relief soon. Try not to panic and believe that it is going to get better. All my facial discomfort has gone away now though it was gradual over a period of several months.
                          I started experiencing flushing as a side effect from another med, but it was improving. Then the dermatologist said, "Oh, I think you might be starting to get rosacea", and then she gave me a med to make sure I develop a severe case and advanced case of it and not just in my nose, but in my eyes also.

                          Comment


                          • #14
                            Thank you, Everyone!!

                            Thank you, Everyone, you have helped me a lot. I am feeling slightly more hopeful that I can recover from this. I started doing stop blushing hypnosis and that has helped me to be less stressed and full of anxiety. I'm going to assume that the first month post mirvaso is the worst, and that with time I will improve. And where there was once hope that I didn't even have rosacea, I can say that hope is gone now. But, maybe there is still hope that I can reduce it back to a manageable and livable level. I wish that I had never gone to a dermatologist. I am going to eat more. Be less stressed. Do the self hypnosis for relaxation and stress reduction. I`m going to focus on improvement and maintain hope. And try and get back to living my life with this condition. But, I will take a little time to focus on healing.

                            Comment


                            • #15
                              Getting scared again

                              I was reading more experiences to try and find some hope. I only saw people still struggling with not recovering. And one person posted that they hadn`t recovered for 2 years (it`s been five years for that person now).

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