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Need urgent help figuring out new rosacea symptoms

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  • Aurora823
    replied
    I had a terrible reaction to Rhofade. I developed severe rebound redness after only 4 days of using it and decided to stop using it at that time. My derm never mentioned this possible side effect and seemed shocked when I told her it was happening (she said she had never seen that reaction with Rhofade - well if she took a look online at reviews she would see clear as day that this med has problems). That was almost 3 months ago. I now flush daily (I was never like that before) and I flush at anything. My triggers used to just be heat and stress but now just sitting and relaxing in a cool room I have a flush. And now it BURNS when I flush. Like very painful burning. I did not have this symptom before using Rhofade. I have been to three different derms since the initial one and none will say they think Rhofade progressed my rosacea but I'm worried it did. I thought my symptoms would have cleared up soon after discontinuing but the fact they are still going on 3 months later is super depressing. It has limited me so much. Luckily I work from home right now but that won't go on forever and I'm very worried about going back into an office and overheating and being in pain. At least I can hide it at home. And ugh if this continues into winter and central heating comes on....I won't be able to take it. I feel trapped in my home because of stupid Rhofade. I wish I had dug deeper for reviews on this med before I used it. I regret every day since my reaction that I didn't do that. It's been a living hell. I hope all of our systems can recover from this stupid and dangerous medication. And I hope these derms learn a lesson that they need to better advise their patients. Even if they think the chance a med will have a certain bad side effect - even if it's the smallest percentage - patients deserve to know this. I made sure the derm who prescribed this to me knew this. I chewed her out for how she handled the whole thing from prescribing the med to me when my rosacea wasn't that bad to throwing her hands up in the air when I came back to her in pain. She had zero compassion and she just kept throwing different meds at me including steroids which is so DANGEROUS in general but especially for someone with rosacea. Luckily I was smart enough not to use those. So original poster I feel your pain! I hope you have made a full recovery.

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  • boris
    replied
    Originally posted by antwantsclear View Post
    The problem is that medicines like rhofade and mirvaso may cause deterioration in the underlying vascular infrastructure that causes the redness and flushing. Medicines such as clonidine or moxonodine are likely to help the peripheral vessels operate a better. I've suggested quite a few above, and some are likely to work more than others depending on your individual physiology and circumstances. But I'd definitely encourage you to discuss such medicines with an appropriate doctor who knows something about them.
    yup , good advice

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  • antwantsclear
    replied
    Originally posted by anon View Post
    Do you know if that severe flushing response that can develop to those medications is permanent? I stopped taking the Rhofade almost 4 months ago and I still flush pretty badly, but less often (I’m not sure if the improvement is a result of the IPL lasers and knowing what triggers to avoid by now).
    The problem is that medicines like rhofade and mirvaso may cause deterioration in the underlying vascular infrastructure that causes the redness and flushing. Medicines such as clonidine or moxonodine are likely to help the peripheral vessels operate a better. I've suggested quite a few above, and some are likely to work more than others depending on your individual physiology and circumstances. But I'd definitely encourage you to discuss such medicines with an appropriate doctor who knows something about them.

    Leave a comment:


  • boris
    replied
    Originally posted by anon View Post

    Thanks so much for the response! How can I get my gut health checked, and have you heard of any rebound redness from using those two anti flushing medicines you mentioned? Also, I asked my parents, and they were certain that I don’t have any immune problems. Both of them have rosacea, but mine is much more severe than theirs.
    unless your parents are qualified doctors and youve had testing recently i would take what they say with a pinch of salt ! you need to get real official testing done , but it would be a good idea to first post some pictures so we can see the problem ...

    as for meds , almost anything can cause rebound flushing so im afraid its trial and error to find something that works for your individual case ...

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  • anon
    replied
    Originally posted by antwantsclear View Post
    Rhofade is similar to Mirvaso and the problem over time is that a severe flushing response can develop to these type of medications. I would try medications such as clonidine or moxonodine, propranolol or atenolol, hydroxychloroquine and mepacrine to reduce the flushing response. I'd also consider finding a different dermatologist.
    Do you know if that severe flushing response that can develop to those medications is permanent? I stopped taking the Rhofade almost 4 months ago and I still flush pretty badly, but less often (I’m not sure if the improvement is a result of the IPL lasers and knowing what triggers to avoid by now).

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  • antwantsclear
    replied
    Originally posted by rednessator View Post
    Isn’t Rofade and Mirvaso related? I have not heard Soolantra to cause such symptoms but Rofade (or whatever its called?).... ?
    Rhofade is similar to Mirvaso and the problem over time is that a severe flushing response can develop to these type of medications. I would try medications such as clonidine or moxonodine, propranolol or atenolol, hydroxychloroquine and mepacrine to reduce the flushing response. I'd also consider finding a different dermatologist.

    Leave a comment:


  • rednessator
    replied
    Isn’t Rofade and Mirvaso related? I have not heard Soolantra to cause such symptoms but Rofade (or whatever its called?).... ?

    Leave a comment:


  • anon
    replied


    Thanks so much for the response! How can I get my gut health checked, and have you heard of any rebound redness from using those two anti flushing medicines you mentioned? Also, I asked my parents, and they were certain that I don’t have any immune problems. Both of them have rosacea, but mine is much more severe than theirs.

    Leave a comment:


  • boris
    replied
    never heard of soolantra or rhofade causing rebound flushing so i think you can disregard that as the problem , dont believe everything you read on the internet ! i would start by getting a full check on your gut health first ( check for SIBO etc ) and look into anti flushing meds such as clonidine or propanalol ...

    strange that youve had it since a very young age , maybe you were born with a compromised immune system ?

    Leave a comment:


  • anon
    started a topic Need urgent help figuring out new rosacea symptoms

    Need urgent help figuring out new rosacea symptoms

    I’m a 19 year old girl, and have had rosacea since I was about 10. For the past 9 years, my symptoms have been limited to permanent, severe redness in my face.

    In June 2018 a dermatologist prescribed me Rhofade and Soolantra, both to be used daily. I used them every day until December 2018, and at first, I thought that I saw improvement. However, in late August of that year, while still using both of the prescriptions, I experienced a flushing episode after drinking a glass of Rosé. This was really unusual for me, and I hadn’t even known that wine was considered a rosacea trigger, since I had never needed to worry about triggers before. (My only rosacea symptom prior to this was the permanent redness, not flushing.) Unfortunately, since that night, I have experienced multiple flushing episodes a day, every single day. Sometimes it would be in response to common triggers like chocolate or caffeine (which I had been eating daily before this, but quickly learned to avoid), but most of the time there appeared to be no discernible cause at all. Finally, in December, I read an article online that advised me to stop using the Rhofade and Soolantra, as they are said to cause rebound redness (?), and I have not used them since. In addition, I went through 3 rounds of IPL lasers since December, and I think they’ve helped with my permanent redness, but not with the flushing. It’s now April 1st of 2019, and while my random flushing episodes have decreased in frequency since stopping the Rhofade and Soolantra and getting the IPL lasers, they still do happen randomly, and they still always happen when I eat foods that I’ve identified as triggers.

    So, my point is to ask if anyone knows if I’ll ever go back to not flushing again, like my symptoms were before I used the prescriptions (if the prescriptions were even the cause in the first place). I’m currently a freshman in college, living in a dorm with 12 suitemates, so there is literally no privacy to hide my red face. Any self-confidence I had before the flushing episodes has completely deteriorated, and I don’t think I need to explain to other people with rosacea how humiliating it is to have people asking me everyday why my face is so red. I’ve never been able to feel attractive, since I’ve had this condition since I was a kid, but the flushing episodes have brought me to new lows. I also know that it’s unusual for someone my age to have even developed rosacea in the first place, so I’m feeling very alone in this process. Basically, this forum is my last resort, because I can’t find any information online at all, and it’s scary to know that I’m potentially looking at living the rest of my life like this.

    I know this was lengthy, so I’m grateful to anyone who’s even read this far, even if they have no advice to give me.
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