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

  1. #11
    Senior Member laser_cat's Avatar
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    Quote Originally Posted by owldog View Post
    Thanks laser cat. I know what you mean. Docs really seem to ignore the flushing side effect with Accutane.

    I've been on and off Accutane for a long time. I had very severe acne when I was a teenager so they put me on a high dose 40mg a day (I'm very small so that's high for me) for 6 months. Cleared up the acne beautifully however it kept coming back, more mild but persistent, through my 20s. I also have really oily skin. So they put me on a low dose regimen of 10-20mg a week.

    My skin was great. I had no eczema in that time (weird I know as you'd expect the dryness to exacerbate eczema), barely got ill and my allergies were dampened down. After 15 years of this regimen and getting on with my life etc I decided maybe I shouldn't be on this drug anymore so I started lowering my dose to 10mg every 2 weeks then trying to taper off.

    That's when the extreme flushing started and I stopped taking accutane immediately. I also developed Raynaud's around this time. It's been 2 years since and my skin is worse than ever. And 8 months after I stopped accutane I developed rashes which were diagnosed as subacute cutaneous lupus.

    So who knows if accutane gave me lupus or triggered it. I have a family history of autoimmune illness so perhaps it may have triggered something that was dormant. Or I may have ended up getting it anyway. I really don't know. But at this point I'm willing to take a risk and retry taking it. One doc seems to think the accutane may have actually been holding back the autoimmunity I already had as it was triggered when I lowered my dose.

    It's a weird drug as it's both helpful and can be harmful. No surprise it was originally used as a chemotherapy agent for people with brain cancers. The rheumatologist I see thinks for me for the acne I've been getting accutane is safer than something like spironolactone which he thinks could trigger lupus flares. I'm trusting him at the moment on this one. But obviously if the accutane makes me worse I will definitely reconsider.

    Can you go ahead taking the accutane with flagyl? If that worked so well is there a reason behind not taking them together? Perhaps you can convince your docs to try that again. You definitely wouldn't lose your foothold so don't worry about that.

    You are definitely right about taking something that counteracts the flushing effect that accutane seems to trigger in some people. If my experiment doesn't work too with accutane alone then I may try with ketotifen too. I also thought about trying with LDN, I saw a paper about it being helpful at stabilising mast cells in the gut.

    Honestly I wish my docs would consider me taking accutane with antibiotics however the ones I'm seeing are pretty conservative in their dosing and due to the lupus I have they're reluctant to prescribe antibiotics as they think it may send me into a flare. I'm willing to try it though.

    Thanks for explaining all that. Sorry you've been dealing with skin issues for so long. I'm glad accutane helped you for as long as it did.

    My docs in CA have realized I'm a very difficult case (Dr. Berger at UCSF and a derm at stanford). Dr. Berger gets tertiary referrals and I asked him how often his vasoactive/nerve/antibiotic protocol worked for neurogenic rosacea patients? and he said 80%. I asked "are they as bad as me?" He said "you're in the top 20-25%" So he supports flagyl for me. He's had patients who get sensory neuropathy on it and says their skin benefits outweigh that (huge) side effect... and at this point I agree. He said "sometimes it's the only drug that works for rosacea." The docs I'm seeing out here I think want to be more conservative, maybe it hasn't dawned on them I've lost a piece of myself and a large part of my life for several years due to this. I want to ask for ketotifen though first - I think a less powerful drug but I can see that complementing the accutane well. Maybe my local docs would go for that ....

    Yes, the flagyl definitely helped accelerate the accutane effectiveness.

    I could see accutane masking some of the autoimmune issues for you. And I have to thinkj about issues with rebound iwth any drug I take. I don't usually hear about flushing starting after stopping accutane - so that's interesting. I hope getting on a maintenance dose will be just what you need, then. My CA docs give maintenance doses for life to a lot of people, they aren't concerned about doing that. Actually, I think they all must be on a maintenance dose of accutane - derms' skin always looks perfect? "He could be 35 or 50... hard to say"

    Good luck and keep us /me posted Thanks for sharing your story.

  2. #12
    Senior Member laser_cat's Avatar
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    Quote Originally Posted by owldog View Post
    Thanks laser cat. I know what you mean. Docs really seem to ignore the flushing side effect with Accutane.

    I've been on and off Accutane for a long time. I had very severe acne when I was a teenager so they put me on a high dose 40mg a day (I'm very small so that's high for me) for 6 months. Cleared up the acne beautifully however it kept coming back, more mild but persistent, through my 20s. I also have really oily skin. So they put me on a low dose regimen of 10-20mg a week.

    My skin was great. I had no eczema in that time (weird I know as you'd expect the dryness to exacerbate eczema), barely got ill and my allergies were dampened down. After 15 years of this regimen and getting on with my life etc I decided maybe I shouldn't be on this drug anymore so I started lowering my dose to 10mg every 2 weeks then trying to taper off.

    That's when the extreme flushing started and I stopped taking accutane immediately. I also developed Raynaud's around this time. It's been 2 years since and my skin is worse than ever. And 8 months after I stopped accutane I developed rashes which were diagnosed as subacute cutaneous lupus.

    So who knows if accutane gave me lupus or triggered it. I have a family history of autoimmune illness so perhaps it may have triggered something that was dormant. Or I may have ended up getting it anyway. I really don't know. But at this point I'm willing to take a risk and retry taking it. One doc seems to think the accutane may have actually been holding back the autoimmunity I already had as it was triggered when I lowered my dose.

    It's a weird drug as it's both helpful and can be harmful. No surprise it was originally used as a chemotherapy agent for people with brain cancers. The rheumatologist I see thinks for me for the acne I've been getting accutane is safer than something like spironolactone which he thinks could trigger lupus flares. I'm trusting him at the moment on this one. But obviously if the accutane makes me worse I will definitely reconsider.

    Can you go ahead taking the accutane with flagyl? If that worked so well is there a reason behind not taking them together? Perhaps you can convince your docs to try that again. You definitely wouldn't lose your foothold so don't worry about that.

    You are definitely right about taking something that counteracts the flushing effect that accutane seems to trigger in some people. If my experiment doesn't work too with accutane alone then I may try with ketotifen too. I also thought about trying with LDN, I saw a paper about it being helpful at stabilising mast cells in the gut.

    Honestly I wish my docs would consider me taking accutane with antibiotics however the ones I'm seeing are pretty conservative in their dosing and due to the lupus I have they're reluctant to prescribe antibiotics as they think it may send me into a flare. I'm willing to try it though.
    Ugh just read something from my local doc - she thinks 5 mg / day of accutane won't do anything - that I need 40 mg / day for my weight of 45 kg (huh?). It's frustrating how I'm not listened to out here in this new state. I wish docs would take the whole picture into account - let's give her an antibiotiic to calm the flushing and pain so she can titrate higher on the accutane if needed. Also, why did I notice such great effects from ~10 mg accutane on avg /day for 2.5 wks or so? Being on flagyl but results far superior to flagyl? So ... maybe I could respond to baby doses? why are doctors schmoctors?

    Frustrating when I feel like I'm going around in one big circle. I would honestly fly out to CA for medical care but not an option right now.

    Yeah btw i heard that with minocycline - that's why that wasn't rx'ed for me - bc it doesn't go well with lupus (everyone disagrees on whether I have a CTD). Not sure about the other antibiotics, though.

  3. #13
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    Quote Originally Posted by laser_cat View Post
    Ugh just read something from my local doc - she thinks 5 mg / day of accutane won't do anything - that I need 40 mg / day for my weight of 45 kg (huh?). It's frustrating how I'm not listened to out here in this new state. I wish docs would take the whole picture into account - let's give her an antibiotiic to calm the flushing and pain so she can titrate higher on the accutane if needed. Also, why did I notice such great effects from ~10 mg accutane on avg /day for 2.5 wks or so? Being on flagyl but results far superior to flagyl? So ... maybe I could respond to baby doses? why are doctors schmoctors?

    Frustrating when I feel like I'm going around in one big circle. I would honestly fly out to CA for medical care but not an option right now.

    Yeah btw i heard that with minocycline - that's why that wasn't rx'ed for me - bc it doesn't go well with lupus (everyone disagrees on whether I have a CTD). Not sure about the other antibiotics, though.
    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!

  4. #14
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    Quote Originally Posted by laser_cat View Post
    Thanks for explaining all that. Sorry you've been dealing with skin issues for so long. I'm glad accutane helped you for as long as it did.

    My docs in CA have realized I'm a very difficult case (Dr. Berger at UCSF and a derm at stanford). Dr. Berger gets tertiary referrals and I asked him how often his vasoactive/nerve/antibiotic protocol worked for neurogenic rosacea patients? and he said 80%. I asked "are they as bad as me?" He said "you're in the top 20-25%" So he supports flagyl for me. He's had patients who get sensory neuropathy on it and says their skin benefits outweigh that (huge) side effect... and at this point I agree. He said "sometimes it's the only drug that works for rosacea." The docs I'm seeing out here I think want to be more conservative, maybe it hasn't dawned on them I've lost a piece of myself and a large part of my life for several years due to this. I want to ask for ketotifen though first - I think a less powerful drug but I can see that complementing the accutane well. Maybe my local docs would go for that ....

    Yes, the flagyl definitely helped accelerate the accutane effectiveness.

    I could see accutane masking some of the autoimmune issues for you. And I have to thinkj about issues with rebound iwth any drug I take. I don't usually hear about flushing starting after stopping accutane - so that's interesting. I hope getting on a maintenance dose will be just what you need, then. My CA docs give maintenance doses for life to a lot of people, they aren't concerned about doing that. Actually, I think they all must be on a maintenance dose of accutane - derms' skin always looks perfect? "He could be 35 or 50... hard to say"

    Good luck and keep us /me posted Thanks for sharing your story.

    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.

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    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

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    Quote 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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    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; 20th February 2021 at 08:33 PM.

  8. #18
    Senior Member laser_cat's Avatar
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    Quote 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; 20th February 2021 at 10:58 PM.

  9. #19
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    Quote 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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    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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