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Starting LD Accutane...suggestions for products/supplements?

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  • #16
    Originally posted by Katt View Post
    Doxy didn't help me at all...and it used to, for regular acne.

    Maybe I'll try the pill cutting thing...is it OK to store the accutane in the fridge?

    And do you all share what you're doing with your doctors, or keep quiet about messing with the dosage lol
    Totally fine to store it in the fridge. That's where I store mine.

    As long as you're taking a dosage lower than what your docs have prescribed you could always experiment at first on a lower dose, see how that goes and if it's going well you could tell your doc then perhaps.

    Play it by ear and see how it goes. That's what I tend to do but obviously not sure if that's the best practice lol

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    • #17
      Thanks owldog! I'll order the caps and try 5mg first.

      lasercat, do you mind sharing the name of your derm in CA? I'm not in CA (Im in MA) but if there are derms there ok with continuous low maintenance dosing (maybe for life?), maybe I can speak to him or her or have my derm discuss with them. Hell, I'll fly out there if I have to.
      Last edited by Katt; 20 February 2021, 08:33 PM.

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      • #18
        Originally posted by owldog View Post
        That's so frustrating! Doctors can be a real pain. Some of them get stuck in this mindset when administering medications and can't budge. 40mg a day is more a dose for acne. I'm about 45kg too and that was my initial dose back when I was 16 with no other problems other than acne.

        Hopefully they can agree to a lower dose in conjunction with antibiotics. It shouldn't have to be a fight though.

        I know how you feel about wanting to try drugs where the benefits outweigh the side effects. I've been pretty much housebound for the last 2 years so I'm willing to try more risky drugs as I feel I have nothing to lose at this point. It's hard getting docs to understand that though. Even the rheumatologist I see is reluctant to start me on immunosuppressives due to side effects even though some of my symptoms are so debilitating that I feel the benefits would clearly outweigh any damage the drug may do.

        It's interesting that your docs can't agree on a CTD diagnosis for you. I had the same problem initially before I got any rashes as my blood tests were mostly normal apart from a positive ANA.

        Hope your docs can come to a compromise and please keep us posted on how you get on!
        Thanks for understanding! I'm sorry about you being housebound. Similar boat for me. Very very debilitating over here.

        Also, we are smart cookies lol who know our condition - wish docs would listen more, as a rule!

        I'm flying to Dr. Callen (Louisville supposed CTD expert) actually in March for definitive CTD diagnosis. He wanted the biopsy slides, so I'm glad he is being thorough. Several docs want me to see him. I haven't really responded to any of the CTD treatments: LDN, Otezla, cellcelpt, MTX, imuran, Xeljanz, plaquenil. They DO help my neck for whatever reason so Istay on cellcept max dose even during pandemic. Hopefully after vaccines you can try something for your lupus. I was told actually there is an overlap sort of between rosacea and lupus - biopsies can have mucin in both and both can respond to plaquenil / accutane and both can have photosensitivity. My ANA is normal, so they don't think I have lupus, but dermatomyositis can be seronegative so it's whether I have an overlap of that (on top of rosacea, nobody is discounting the rosacea ) The last treatment would be IVIG that catches all the resistant CTD cases - but it is $$ for me. It's not immunosuppressive though ...

        Yes, I bring a white male with me during appts (dad or brother..) and i just say "you dont have to do anything but sit there and be a man...literally". I gave them a script to read for new docs sometimes saying: "She is in constant pain, 50% roombound due to air on cheeks, hasn't worked in 4 years. She was an engineer before this, and I see her on so many drugs that don't make sense or aren't helping enough. I see her flushes everyday." (something like that!) I think (youngish) docs are cocky until they see they've rx'ed something that made you worse. Unfortunately that step seems to be necessary with most docs.

        Thanks for confirming 20 mg is way too high lol for this.

        Chat soon x
        Last edited by laser_cat; 20 February 2021, 10:58 PM.

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        • #19
          Originally posted by Katt View Post
          Thanks owldog! I'll order the caps and try 5mg first.

          lasercat, do you mind sharing the name of your derm in CA? I'm not in CA (Im in MA) but if there are derms there ok with continuous low maintenance dosing (maybe for life?), maybe I can speak to him or her or have my derm discuss with them. Hell, I'll fly out there if I have to.
          Well, i would think you'd have to fly out every month :p I think you could find a local doc if you look enough. Youve tried large teaching hospitals? My impression is maintenance doses are not uncommon if they are proven they are needed.

          First see if it works for you - i hope it does! one thing at a time

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          • #20
            yes I am getting ahead of myself aren't I? I'm praying this works. If so, I'll have to find a derm to work with me.

            Ordered the gel caps size 00

            Second pregnancy test Monday. Such a process.

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            • #21
              What is CTD? I'm glad you found a specialist!

              I've been housebound too. It's so hard.

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              • #22
                Originally posted by Katt View Post
                What is CTD? I'm glad you found a specialist!

                I've been housebound too. It's so hard.
                I'm so sorry. I wish the impact of rosacea, flushing, and similar were more well known by doctors

                CTD = connective tissue disease, like lupus or dermatomyositis. There are others. Best to see a rheum to rule those out, in my opinion. Some are like puzzle diagnoses (meet 5 of the following 10 criteria).

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                • #23
                  Originally posted by RedMage View Post
                  I was taking 3.33 mg of isotretynoin every other day, at the beginning I experimented with the dose for the first weeks and in the end this dose seemed to be the best in terms of the low number of side effects and effectiveness.

                  It seems to me that this is what made my ears noticeably redder, especially in the evening and after bathing. As if the blood from the cheeks was headed to this very area. I was taking isotretinoin for 3 months and stopped in mid-January. Today, after 5 weeks, I'm coming back, taking 5 mg every other day to start.

                  During the break the strong redness of the ears disappeared, but the face is much more red and greasy. I am curious if the symptoms of red ears will come back again, as before. I see a lot of people on the forum put off Accutane and later return to it so I won,t be first.

                  As I mentioned at the beginnig I was on much highr dose but after couple weeks it gave me a week of red face horrors, so I don't think my body can handle too much of isotretynoin at once.
                  Is your face redder now (after stopping Accutane) than it was before you started Accutane.

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                  • #24
                    Originally posted by ElaineA View Post
                    Interesting that Flagyl helps. Its generic name is Oral Metronidazole. Its a curious drug in that it is both an antibiotic and an anti-parasitic drug. Flagyl/Oral Metronidazole kills demodex skin mites. I took the Oral-Ivermectin + Oral Metronidazole 2 week treatment for demodex and had no side effects or issues with either drug.

                    Minocycline like doxycycline both kill bacillus oleronius a bacteria found in demodex. Minocycline does have some potentially weird central nervous system side effects with long term use. After 6-8 years on iMinocycline for my misdiagnosed "bacterial acne", I ended up with the autoimmune caused Guillain-Barre Syndrome and autoimmune caused Raynaud's Syndrome. It was definitely caused by the Minocycline as it didn't start getting better until I stopped taking the Minocycline. And 9 months later when I started taking the Minocycline again the G-B symptoms were back within 24 hours. Stopped taking Minocycline and the symptoms stopped within 24 hours. Eventually I recovered from the Raynaud's Syndrome symptoms as well. Many reports are that Minocycline or Doxycycline only help for the first 1-2 months. My guess is that once the antibiotic kills off the bacillus oleronius bacteria, it doesn't really help anymore.
                    That's interesting. I definitely dont have mites as my issue, as i did ivermectin (oral) course. Glad i did it tho as it is low hanging fruit.
                    I actually was specifically not rx'ed Minocycline since it can cause autoimmune things like lupus. And some docs think I have autoimmune issues already. I'm sorry that happened to you though. GB is serious. So i'm glad you recovered.

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                    • #25
                      I'm glad you are better Elaine! Sorry you are dealing with CTD laser cat.

                      So, I picked up my Accutane today BUT I've decided I'm not going through with it right now. I've been doing a lot of research and it seems like all the studies say remission does not last for rosacea patients once the medication is stopped. So I don't think I should put my body through it, even at a low dose, to have it just come back.

                      That said, if things start really doing bad, like thickening skin or issues with my nose, I'll go on ASAP and find someone (hopefully) that will allow me to do a Continuous Maintenance Dose after.

                      What I'm doing now is really monitoring my diet and I'm going to ask to try Metrogel again.

                      My derm is going to think I'm crazy, after being so adamant about getting him to prescribe me low dose in the first place.

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