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Accutane has cured my flushing

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  • #31
    Very interesting thread. I tried accurate many years ago after I visited a derm, he recommended it for my rosacea and mild acne but I could not tolerate it all. Similar to @laser_cat I experienced terrible pounding headaches which were unbearable and stopped within a week. Maybe the dose was too high. I would be tempted to try it again at a low dose to see if it helped things. Although I've read it can cause hair loss so that worries me too

    @owldog any update on your progress?

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    • #32
      Just a quick update.

      I've been taking accutane for a few months now. I'm still taking 5mg twice a week. It's working great for my skin texture, the swelling on my cheekbones and the general oiliness of my face. It's also helped with the itching on my scalp, I had a mild rash with some hair loss which the docs thought could be lupus related (it wasn't biopsied in time due to covid). The rash and itching have all cleared up since I started isotretinoin.

      The sensitivity on my face has also improved. Even though the top layer of my skin is probably thinner, it feels stronger and less reactive. I am now even able to wear fragranced makeup occasionally without my skin freaking out. I'm also able to apply azelaic acid on the reactive parts of my face without it getting aggravated. Before it would hurt so bad I couldn't even dab it on a small patch.

      The nerve sensations on my face have calmed down a bit too and my face doesn't have that constant itchy feeling.

      However I think it's made my redness possibly a bit worse, it looks more obvious, whereas before it blended in more to the general redness on my face. That could be because the rest of my face is now a lot paler with less inflammation so the redness I have on my cheeks looks more noticeable.

      I've also developed some new telangiectasia since being on it. I've had a problem with my blood vessels for 2 years now where they keep breaking off and spreading out and the red areas get bigger and bigger on my cheeks, legs and arms. As well as extensive livedo reticularis which is linked to the connective tissue disease. So it's hard to say whether the drug has made it worse or whether I would have got worse anyway. No drug so far has seemed to halt this progression for me. I'm guessing lasers may be the only thing that would remove these damaged vessels.

      And it does nothing for the actual flushing for me. No improvement or worsening one way or the the other.

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      • #33
        Thanks so much for updating us on your results. Even though the flushing isn't improved for you, I'm really intrigued that your swelling went down since that is a big problem for me. I know what you mean about red areas possibly only looking more red because there is less swelling than usual- I've noticed that myself on days when my swelling happens to go down.

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        • #34
          Originally posted by Jamoverton View Post
          Thanks so much for updating us on your results. Even though the flushing isn't improved for you, I'm really intrigued that your swelling went down since that is a big problem for me. I know what you mean about red areas possibly only looking more red because there is less swelling than usual- I've noticed that myself on days when my swelling happens to go down.
          Thanks! Yeah the swelling has gone done. It was getting really puffy on my cheekbones and around my eyes. My eyes actually look bigger now and my face feels a lot slimmer.

          When I do flush it doesn't swell up and actually the flushing fades a lot quicker than before. Maybe before I was getting fluid trapped in those areas which was provoking more flushing and inflammation. Before the accutane my face would stay really red all the way into the morning from my nightly flares. Now when I wake up I'm super pale. Really no redness at all and all the residual redness from the night before has cleared.

          It's a shame though it's not stopping the actual flushing from happening at all for me or the permanent broken blood vessels. But this and Cymbalta have been good for the pain which has been one of my most debilitating symptoms.

          I would consider really low dose if swelling is your main issue.

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          • #35
            Swelling

            With extreme swelling in rosacea (Morhiban disease), they state here why isotretinoin *could* work. I definitely believe there is some damage to lymphatic vessels and iso (as well as doxy) could help with these things:

            https://jamanetwork.com/journals/jam...rticle/1392456

            https://nextstepsinderm.com/derm-top...bihan-disease/

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            • #36
              I have a question about low-dose Accutane dosage that hopefully someone can answer. I see a few people on here taking doses of 2.5 mg - but it looks like pills don't come in less than 10 mg? Are you guys cutting the pills? Of course I'll ask my derm as well at my next appointment, but I wanted to get an idea of how people were getting 2.5 mg doses.

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              • #37
                Next time I was going to try to get 5 mg compounded. I was basically putting 10 mg contents in applesauce, and taking a quarter a day, so 4 days worth added to 10 mg. Sometimes I'd try to cut it first, keep the other half in the refrigerator, and put half in applesauce. So ... very carefully? Seems like the OP got 2.5 mg or 5 mg compounded.

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                • #38
                  Originally posted by owldog View Post
                  Just a quick update.

                  I've been taking accutane for a few months now. I'm still taking 5mg twice a week. It's working great for my skin texture, the swelling on my cheekbones and the general oiliness of my face. It's also helped with the itching on my scalp, I had a mild rash with some hair loss which the docs thought could be lupus related (it wasn't biopsied in time due to covid). The rash and itching have all cleared up since I started isotretinoin.

                  The sensitivity on my face has also improved. Even though the top layer of my skin is probably thinner, it feels stronger and less reactive. I am now even able to wear fragranced makeup occasionally without my skin freaking out. I'm also able to apply azelaic acid on the reactive parts of my face without it getting aggravated. Before it would hurt so bad I couldn't even dab it on a small patch.

                  The nerve sensations on my face have calmed down a bit too and my face doesn't have that constant itchy feeling.

                  However I think it's made my redness possibly a bit worse, it looks more obvious, whereas before it blended in more to the general redness on my face. That could be because the rest of my face is now a lot paler with less inflammation so the redness I have on my cheeks looks more noticeable.

                  I've also developed some new telangiectasia since being on it. I've had a problem with my blood vessels for 2 years now where they keep breaking off and spreading out and the red areas get bigger and bigger on my cheeks, legs and arms. As well as extensive livedo reticularis which is linked to the connective tissue disease. So it's hard to say whether the drug has made it worse or whether I would have got worse anyway. No drug so far has seemed to halt this progression for me. I'm guessing lasers may be the only thing that would remove these damaged vessels.

                  And it does nothing for the actual flushing for me. No improvement or worsening one way or the the other.
                  owldog - it's interesting that for me too the pain went down with accutane. That was what i noticed the most. The cold/hot pain. I was also on an abx at the time which might have been more helpful with the flushing. The accutane makes me paler and the "orange peel" look is gone. Though, this is a couple months ago and since then I changed doctors and they want me to try some topicals like for dermatitis to bring the inflammation down first before restarting it at very low dose.

                  Can I ask - do you get pin-prick sensations UNDERNEATH your skin with the accutane at any point? (or anyone else?) It seems like I do with accutane and a couple other meds. My instinct is this is a good thing? when it's just a prick and not painful, hot or acid-like. Like inflammation is breaking up, moving around. No idea though. Just curious if you felt anything like that. Remind me what dose you are on?

                  Also you're diagnosed with lupus too, right? I emailed R Gallo (UCSD) about my case and similar cases and he thought either there was an unknown type of inflammation in my case or that I have a very atypical rosacea pathology. Docs go back and forth with me on the connective tissue front. All major institutions I've seen though have at least agreed on rosacea (UCSF, Stanford, Tulane, Louisville ... ahh too many). Though I think they have all disagreed on this "other thing" though. (overactive nerves? connective tissue? inflammation from sun damage? dermatitis?)

                  glad to hear accutane is helping in some ways with you. x
                  Last edited by laser_cat; 15 June 2021, 06:24 PM.

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                  • #39
                    laser_cat Thank you for your response! That makes sense.

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                    • #40
                      laser_cat That's really great that accutane was helping the pain for you too. Yes it 's the cold/hot pain that it's helped the the most for me. I did used to get throbbing burning sensations and they have been reduced (not completely gone though).

                      And yes I get the pin prick sensations. For me at it's worst it feels like tiny drops of hot wax dropping on my cheeks. I've had these sensations since the beginning when I first developed symptoms. I would say that the accutane has improved them. When I first started taking accutane the sensations were worst however they seem to have settled down with consistent dosing. I am still on 10-15mg a week.

                      Unfortunately for me it has made my redness worse though. But I have a lot less pain, a lot less sensitivity and no swelling. My skin texture has improved, I can tolerate the heat more and now I can finally wear makeup without my skin freaking out. So the redness is now just a cosmetic issue rather than something that was debilitating.

                      I have a diagnosis of subacute cutaneous lupus. So extreme photosensitivity with rashes. I have other symptoms including joint pain, raynaud's, livedo reticularis but because the only blood marker I have is positive ANA 1:320 the rheumatologist went with a diagnosis of cutaneous lupus rather than systemic. I guess it's a case of wait and see. I see him every 6 months for checks. But it's frustrating as it's limited my drug options to just hydroxychloroquine and possibly methotrexate. The rheumatologist I see is highly conservative with his drug choices which is annoying as hell as I have a gut feeling immune drugs may be the best treatment for me.

                      The only doc I saw which went with a rosacea diagnosis was Professor Chu. I saw him right at the start when I first started flushing. He saw me for 5 minutes max, didn't run any tests, ignored me when I said I'd just developed Raynaud's and how my cheeks went bright red in the sun, he went with a diagnosis of accutane induced rosacea and gave me clonidine. Honestly looking back clonidine was probably one of the worst drugs he could have given me. It's caused nothing but problems since, severe nose and ear flushing, worsening of Raynaud's and livedo reticularis and blood pressure instability. And it's taken me a good 6 months to try and wean myself off it. I really don't think it should be first line treatment unless all tests have been done to rule out autoimmune diseases. Anyway haha that's my rant over!

                      But yeh my point is that it's hard to get a diagnosis for connective tissue disease. That's interesting that in your case they pinpointed it to an atypical type of rosacea, which means they are open to it being something else. So the possibility is still there that it may be connective tissue disease? Are you photosensitive as well?

                      Just curious do you get telangiectasias on your cheeks as well? I have loads of them now on my cheeks and all over my body. I didn't have a single one 2 years ago but now they keep on spreading, I always thought these were a sign of rosacea but my rheumatologist said they're actually quite common in people who have connective tissue disease. Both lupus and dermatomyosisits can cause the blood vessels to weaken and dilate.

                      He even attributes the general redness on my face to lupus as it's there all the time now. He told me that in some cases it doesn't go away even with treatment and I have to learn to live with it. I asked him about laser treatment and he advised against it for anyone with photosensitivity. Surprising as it's a different wavelength to UV light. I asked him what's the worst that would happen and he said that you'd possibly get a rash in the area where the light hits. So I'm just rocking the red cheeks look now and learning to get on with it haha.

                      Last edited by owldog; 28 June 2021, 07:39 PM.

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                      • #41
                        I wanted to chime in on my Accutane experience. I took about 5mg/day every other day for about 4 weeks and then experimented with taking 20mg/day 2-3 times per week for a couple weeks.
                        I think maybe I overdid it at the end because I got a flareup and some dry skin. The flushing hasn't really been affected one way or the other, but I want to clear up this patch of redness on my left cheek before I try it again. My skin has reacted this way when it's gotten too dry before, so unfortunately Accutane might not work out for me. I'm going to see how the next couple of weeks go.

                        At this point I'm going to try seeing a derm at a teaching hospital near me. I'm not sure what the next steps are so I'm hoping a professional can point me in the right direction. It's possible that higher dose of antibiotics or immunosuppressants could be something to try. My skin is just so sensitive and prone to irritation from dryness that I don't think Accutane is the right choice for me- unless I can get my skin really stable and then take a really low dose and go very slowly the next time. I think I really overdid it trying to take a 20mg dosage multiple times per week.

                        I am also upping my hydroxychloroquine dosage from 200mg/day to 300mg/day. So far that and mirtazapine have been the most effective for me.

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                        • #42
                          Originally posted by Jamoverton View Post
                          I wanted to chime in on my Accutane experience. I took about 5mg/day every other day for about 4 weeks and then experimented with taking 20mg/day 2-3 times per week for a couple weeks.
                          I think maybe I overdid it at the end because I got a flareup and some dry skin. The flushing hasn't really been affected one way or the other, but I want to clear up this patch of redness on my left cheek before I try it again. My skin has reacted this way when it's gotten too dry before, so unfortunately Accutane might not work out for me. I'm going to see how the next couple of weeks go.

                          At this point I'm going to try seeing a derm at a teaching hospital near me. I'm not sure what the next steps are so I'm hoping a professional can point me in the right direction. It's possible that higher dose of antibiotics or immunosuppressants could be something to try. My skin is just so sensitive and prone to irritation from dryness that I don't think Accutane is the right choice for me- unless I can get my skin really stable and then take a really low dose and go very slowly the next time. I think I really overdid it trying to take a 20mg dosage multiple times per week.

                          I am also upping my hydroxychloroquine dosage from 200mg/day to 300mg/day. So far that and mirtazapine have been the most effective for me.
                          Hi, did the Accutane help you at all with swelling. Also did you get any side effects like dry eyes, headaches or muscle/joint pain.
                          I am going to start next week and the dermatologist I saw told me to dose at around 50mg per week maximum for Rosacea. (10mg - 5 times a week.)

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                          • #43
                            Originally posted by Mknlvi View Post

                            Hi, did the Accutane help you at all with swelling. Also did you get any side effects like dry eyes, headaches or muscle/joint pain.
                            I am going to start next week and the dermatologist I saw told me to dose at around 50mg per week maximum for Rosacea. (10mg - 5 times a week.)
                            It's been hard to say if it helped the swelling- that's why I'm considering trying it again. I did get some dry eyes and lips, but otherwise no side effects. I would definitely give it a try, but go really slowly if your skin is dry and sensitive like mine is. I wish I had gone slower. If I try it again I'll probably start with 10mg / week in the hopes that I could avoid getting more redness like I did the first time.

                            Good luck and please keep us posted on your results! Are your main symptoms flushing and swelling?

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