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Thread: Accutane has cured my flushing

  1. #21
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    Quote Originally Posted by laser_cat View Post
    Yeah, I can def see how it would slim down your face. I hope it goes well for you too. It even slimmed down my neck, which I didn't realize was tight.

    Funnily enough (or not?) I went to the ER for my skull pressure / headache whatever thing. My brother later told me when he dropped me off - "Wow, she's handling these temp changes like a normal person - car to outside to inside the ER.."
    At the time I was scared for my life (I'm better now thankfully) and this was the most striking thing to him about the situation. Lol.
    Lol! Too funny, my family has become extra attuned to how I handle different temps as well, haha.

  2. #22
    Senior Member Brady Barrows's Avatar
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    Quote Originally Posted by laser_cat View Post
    Yeah, I can def see how it would slim down your face. I hope it goes well for you too. It even slimmed down my neck, which I didn't realize was tight.
    Funnily enough (or not?) I went to the ER for my skull pressure / headache whatever thing. My brother later told me when he dropped me off - "Wow, she's handling these temp changes like a normal person - car to outside to inside the ER.."
    At the time I was scared for my life (I'm better now thankfully) and this was the most striking thing to him about the situation. Lol.
    Hope you are ok laser_cat.
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  3. #23
    Senior Member laser_cat's Avatar
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    Quote Originally Posted by Brady Barrows View Post
    Hope you are ok laser_cat.
    Thank you Brady - yes head pressure is fine now. 3 docs now think unrelated to accutane. I won't go into the details but will say that. We are going to retry accutane. I really thought it was going to make me flush, but it didn't.

    I had an interesting experience where I was on 1000 mg flagyl for a while, and I took high dose benadryl (a yr ago?). After enough benadryl, it felt like water balloons in my cheeks collapsed, I was totally temp tolerant, fluid gushed out of my eyes and nose like those gates had been blocked with inflammation, and the skin could "glide easier" along my bones and I couldn't stop smiling because I could. My neck was slimmer and more flexible. Inner nose burning resolved and eye burning resolved. It didn't last, but it made me think that getting rid of the edema could be the way to go, for everything else.

  4. #24
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    Quote Originally Posted by laser_cat View Post
    Thank you Brady - yes head pressure is fine now. 3 docs now think unrelated to accutane. I won't go into the details but will say that. We are going to retry accutane. I really thought it was going to make me flush, but it didn't.

    I had an interesting experience where I was on 1000 mg flagyl for a while, and I took high dose benadryl (a yr ago?). After enough benadryl, it felt like water balloons in my cheeks collapsed, I was totally temp tolerant, fluid gushed out of my eyes and nose like those gates had been blocked with inflammation, and the skin could "glide easier" along my bones and I couldn't stop smiling because I could. My neck was slimmer and more flexible. Inner nose burning resolved and eye burning resolved. It didn't last, but it made me think that getting rid of the edema could be the way to go, for everything else.
    That is amazing. Your benadryl experience ties in with what an intelligent GP said to me a few weeks ago-the edema is from an immune system reaction. I am on a trial of Montelukast and if that doesn?t work, we?re going to try a strong anti-histamine. She is convinced this is the way to go for the edema and it makes sense to me. I?ll keep you all updated. I find GPs are so supportive and really analyse and treat symptoms-dermatologists haven?t a clue what to do and just try and sound intelligent but do nothing to help.

  5. #25
    Senior Member laser_cat's Avatar
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    Quote Originally Posted by Momof View Post
    That is amazing. Your benadryl experience ties in with what an intelligent GP said to me a few weeks ago-the edema is from an immune system reaction. I am on a trial of Montelukast and if that doesn?t work, we?re going to try a strong anti-histamine. She is convinced this is the way to go for the edema and it makes sense to me. I?ll keep you all updated. I find GPs are so supportive and really analyse and treat symptoms-dermatologists haven?t a clue what to do and just try and sound intelligent but do nothing to help.
    That's interesting. I hear of Montelukast helping.

    For the solid edema - I hear of antibiotics, accutane (accutane being best), and antihistamines helping. I hope to find some combination of these. I actually think other drugs - like klonopin, cymbalta, etc - only help by weakly targeting that innate immune system. (decreasing cytokines indirectly).

    I recently asked a derm why he never bothered to target the (insane) blood flow for me, and he said it's not pathological in his eyes. He said, "if you biopsy red, you will see inflammation".

    Yeah with the benadryl - though it was bittersweet experience (not sure why i didn't just keep taking it ... i was worried it wasn't sustainable and rebounding or something .... ) it really made me think, wow, this all could melt away for a near 100% recovery. It's not that the blood vessels are overreactive or bla bla. Honestly it almost seemed like the lymph nodes got kicked into gear (neck CT scan shows I have mildly large lymph nodes) and could clear out the infllammation .... idk. I kept stretching my upper back and neck because the inflammation was gone there, as well.

    Anyway, good luck. Hopefully each of us get improved quality of life. <3 somehow!

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    Senior Member laser_cat's Avatar
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    PS - as for your GP - I now think university hospital derms or derms with national reputations bla bla can overthink things. I went to a derm at my local health clinic (patient told me he was very good) and he looked at my pictures and face and said - the intensity of the flushing feels like an inflammatory reaction to me. Hospital derms were trying so hard to control the blood vessels / nerves bla bla and and he just kind of used common sense. "No, you can't rein that in with a beta blocker." Ahhhhh breath of fresh air...
    I'm glad you have a good relationship with your GP, momof!
    Last edited by laser_cat; 24th January 2021 at 06:17 PM.

  7. #27
    Senior Member laser_cat's Avatar
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    .https://www.semanticscholar.org/pape...d72b2/figure/0

    seems like there is a retinoid receptor that is associated with the vit D receptor, according to this. So I could see how accutane could make things worse maybe just like vit D can in creating bad cathelicidins. But accutane should block TLR2 in the other pathway and have anti-inflammatory effects. Anyway just a thought on how/why accutane might be a balance. I don't think it causes flushing by drying out skin - it seems to be a switch in some people for rosacea pathology itself. (It's interesting that accutane induced rosacea can react badly to vit D like ... "regular rosacea"?)
    Last edited by laser_cat; 11th February 2021 at 05:26 PM.

  8. #28
    Senior Member laser_cat's Avatar
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    Not to hijack this thread when I'm not the OP -

    quick update -

    I cannot tolerate any accutane without other anti-inflammatories like flagyl in the background. I've been on/off flagyl enough to know what it can do, did various titrations of accutane by itself, and flagyl and accutane together. So for accutane by itself, I cannot tolerate 2.5 mg. On flagyl simultaneously for a few weeks prior, I could tolerate 20 mg accutane / day (which is about 0.5 mg / kg for me, a good dose). My longtime doc was surprised that I could tolerate that high dose of accutane being one of the most severe flushers I imagine, that he has seen. So I'm back on flagyl - which I'll be on for life although i'm told it might work less effectively over time - and then maybe try to add back in slow titration accutane when I feel i have enough stability or request ketotifen compounded (mast cell stabilizer used in europe for solid facial edema add-on to accutane) before accutane. If I need more stability, dapsone was recommended - targeting the neutrophils that flagyl also sort of targets - evidence of dapsone for rosacea. Thalidomide was also suggested next at that point as another non antibiotic way to target the innate immune system - but only evidence that it helps rosacea in rats (as far as I know).

    Accutane by itself- felt like tape being ripped off my face. I was told it can increase cell turnover and sensitize that top layer of skin. Even though I was coating myself in vaseline product all the time. So I can sympathize with how it can help some people, and make others worse.


    I'm really surprised the OP was able to reset with such a small amount of accutane. I imagine someone would have to manage to do a full course to have lasting effect. Anything else, I'd think symptoms would immediately come back and low dose accutane would have to be for life. So that's really interesting to me. So much we don't know, and so much that might be patient-dependent.

    edit- It felt like 10 mg accutane / 45 kg person - (I do not recommend this dose for flushers!!) felt like someone poured acid on my nerves, like the nerves thermoTRP receptors were directly activated. (In addition to sensitizing top layer of skin..). I don't know, it's interesting, to think of the "badness" it could do to rosaceans. I got a glimpse I believe on how it could trigger NR, a small glimpse anyway: the mysterious, cruel, and painful result it can have.
    Last edited by laser_cat; 26th February 2021 at 06:58 PM.

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