Announcement

Collapse
No announcement yet.

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

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

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

    I'll be starting 10 mg soon. I think I'm going to just take one every other day to see how it goes. My derm seems to focus on the drug's usage for acne as opposed to rosacea, but at least he's working with me so far. I'm worried about side effects, though, even with low dose. Suggestions?

  • #2
    I did a small trial of accutane in Dec and am currently 3 wks into my "real"? trial.

    First trial: a few weeks of 500 mg BID of flagyl and then started accutane (a few days of 5 mg / day, a few at 10 mg / day and a few at 20 mg / day). I had an unrelated incident and I stopped (I thought accutane caused the other health incident, but docs don't think so, so dont read too much into this). Each dose increase gave me hot ears for an hour or so in the morning (unusual). I am heavy flusher so I am surprised i could go as high as 20 mg / day and not flush. In fact, it was the best I've ever been. Less redness, less pain, less swelling. I've been on just flagyl before, and know that the accutane added a lot of help. esp in temp tolerance. I think if I remember this right, doc said i had so much interstitial fluid in the dermis / around nerves stuck there and maybe the accutane helped to move lymph around / "unstuck" things. I couldn't believe my skin It was soft, thinner (good for me), felt like it had fewer nerves in the skin and less heat.

    2nd trial: doc wants me to see if I can handle accutane by itself and no flagyl. Flagyl is great for some of my pain and flushing but I rebound when I stop ny rosacea antibiotics. Docs ok with me taking flagyl for life, just want to try to minimize medication. Anyway, doc said 10 mg/ day - another doc said 20 mg /day and my long time doc suggested 10 mg 1-3 times per week. I can only tolerate a little bit of accutane without the flagyl. Trying 10 mg / day, I had to reduce a few weeks in because it felt like someone ripped tape off of my skin at times. Reducing to 5 mg / day or every other day. Improvement in skin texture, and some things but making some other things worse. I was told anti-inflammatory effects take 1-2 months to appear and dominate the increased infllammation it might give initially. Anyway, I'm thinking about taking it with ketotifen (Morbihan case studies that do this) or some other mast cell thing to make things more comfortable. If I need to, maybe doc would support adding flagyl back in, and try to taper off after the accutane course.

    My advice - go slow, because i think it can either calm rosacea or increase flushing rosacea and it is dose dependent. And increasing symptoms too soon might scare you off the drug completely. Trying other things that minimize inflammation esp. in the beginning of accutane might be helpful but one thing at a time. I have a friend with rosacea and acne and flushing, and says she rebounds from antibiotics too and ends up needing double dose or 2 antibiotics now to get things under control. She went to accutane and says this is her favorite because it feels like it restructures her skin. She thought 10 mg / day is a low dose generally. Her sweet spot was 40 mg / day after slow titration. 80 mg was too much for her. Not sure how she could tolerate such a high dose when she had time of day flushing but she says it's the best thing that her and her doc found for her. Usually people do like 5 mg a few times a week on here for flushing.
    I think splitting the dose up can be helpful - spreading total dose per week out as much as possible as opposed to one big hit at once.
    I use elta md vaseline for dryness, vaseline on my lips.
    it will be hard on anyone's body for first 1-2 months (told that by doc).
    If you can tolerate it, wear sunscreen.
    I got 2-3 opinions before trying mine about dose and whether I'd be a candidate.

    Good luck!

    one more thing - I agree with the idea that accutane is for refractory rosacea - I tried beta blockers, antidepressants (cymbalta helps me some,), gabapentin, antihistamines, plaquenil, etc. To me accutane is a high risk drug for flushing rosacea because there are so many testimonials of it making it worse, sometimes permanently so

    edit - i assumed you were taking for flushing! that's where all the q's seem to come from about accutane / rosacea recently Pustules - i think done if you failed an antibiotic. Yes, risk of adverse reaction is lower i think if you dont have flushing issues. My skin on the first trial was as smooth as a baby's bottom but i dont usually get pustules. I feel like doses vary widely amongst docs for rosacea acne but still it could make you flush or dry out so I think slower is better either way. My derm does the "go slow" approach with accutane for most conditions. You might have a flare in the first month as dead skin purges out I think. I got really itchy around that time.

    good luck.
    Last edited by laser_cat; 19 February 2021, 11:36 PM.

    Comment


    • #3
      Originally posted by Katt View Post
      I'll be starting 10 mg soon. I think I'm going to just take one every other day to see how it goes. My derm seems to focus on the drug's usage for acne as opposed to rosacea, but at least he's working with me so far. I'm worried about side effects, though, even with low dose. Suggestions?
      Just wanted to join in and agree with laser cat. Definitely go slow and titrate up.

      Some background info. I suffer from severe flushing which has been diagnosed as erythromelalgia but I consider it to border on neurogenic rosacea. I have also developed cutaneous lupus around the same time which the docs believe is underlying the flushing. So for me treating the autoimmune illnesss directly might be key to treating the flushing. Hydroxychloroquine was working initially but doesn't seem to be controlling it anymore after a year. Doc suggested isotretinoin which is also meant to be good for lupus as well as acne which I also have. My flushing happens after food and with sitting down/lying down. Lunch (mildly) and dinner (badly) every night. I've started getting swelling on my cheekbones and mildly on my nose. I also have permanent red patches on my face which is increasing.

      So I've just started the last few weeks in to very low dose accutane at 5mg three times a week. I previously have a long history of taking accutane for acne at a low dose for many years when I didn't have rosacea or lupus. Never had problems with it before until I developed flushing 2 years ago. So I'm willing to take try it again with my current status.

      What I've noticed so far after the first few doses.

      -Redness on my cheeks is more even
      -Oily skin which was really bad before mildly improved
      -Skin texture smoother and brighter

      Even after the first dose I noticed as if my cheeks (which always feel inflamed and tight) were being injected with cold air and relaxing. I know it sounds weird but I'm really attune to the sensations on my face.

      However the negatives I would say a possible mild increase in flushing initially and perhaps my nerves feel a bit more exposed with this crinkly dry feeling.

      I've backed down on the dose this week to just 2.5mg 4 times a week (I'm cutting the 5mg tabs to 2.5mg and putting the cut tabs into clear gel caps). I feel smaller doses are perhaps better for me.

      I am going to continue treatment as I feel it will help the inflammation (and ultimately the flushing) but it's just getting the dose right and as long as in the short term it doesn't make the flushing too bad then perhaps my skin will adjust.

      Anyway my point is start slow and see how your skin adjusts. Honestly if flushing isn't your main problem then I think accutane will work great for you,

      I was on it for many years, about 15 years, on a low dose regimen of 10mg a week. My skin was amazing in that time. It's an impressive drug when it works but treat it with caution. You're doing exactly the right thing by going slowly. It builds up in your system to a cumulative dose so you can afford to go much slower if you like with it.
      Last edited by owldog; 19 February 2021, 06:12 PM.

      Comment


      • #4
        Thank you both for sharing that info. Right now my biggest issue is pustules.

        How are you all managing to cut doses down? I'd like to try this as well. It seems like I can only get 10 mg pills as the lowest dose. Think I'll be taking Amnesteen. How can you make your own dose? I think these are capsules so it might be an issue.
        Last edited by Katt; 19 February 2021, 08:44 PM.

        Comment


        • #5
          Originally posted by owldog View Post
          Just wanted to join in and agree with laser cat. Definitely go slow and titrate up.

          Some background info. I suffer from severe flushing which has been diagnosed as erythromelalgia but I consider it to border on neurogenic rosacea. I have also developed cutaneous lupus around the same time which the docs believe is underlying the flushing. So for me treating the autoimmune illnesss directly might be key to treating the flushing. Hydroxychloroquine was working initially but doesn't seem to be controlling it anymore after a year. Doc suggested isotretinoin which is also meant to be good for lupus as well as acne which I also have. My flushing happens after food and with sitting down/lying down. Lunch (mildly) and dinner (badly) every night. I've started getting swelling on my cheekbones and mildly on my nose. I also have permanent red patches on my face which is increasing.

          So I've just started the last few weeks in to very low dose accutane at 5mg three times a week. I previously have a long history of taking accutane for acne at a low dose for many years when I didn't have rosacea or lupus. Never had problems with it before until I developed flushing 2 years ago. So I'm willing to take try it again with my current status.

          What I've noticed so far after the first few doses.

          -Redness on my cheeks is more even
          -Oily skin which was really bad before mildly improved
          -Skin texture smoother and brighter

          Even after the first dose I noticed as if my cheeks (which always feel inflamed and tight) were being injected with cold air and relaxing. I know it sounds weird but I'm really attune to the sensations on my face.

          However the negatives I would say a possible mild increase in flushing initially and perhaps my nerves feel a bit more exposed with this crinkly dry feeling.

          I've backed down on the dose this week to just 2.5mg 4 times a week (I'm cutting the 5mg tabs to 2.5mg and putting the cut tabs into clear gel caps). I feel smaller doses are perhaps better for me.

          I am going to continue treatment as I feel it will help the inflammation (and ultimately the flushing) but it's just getting the dose right and as long as in the short term it doesn't make the flushing too bad then perhaps my skin will adjust.

          Anyway my point is start slow and see how your skin adjusts. Honestly if flushing isn't your main problem then I think accutane will work great for you,

          I was on it for many years, about 15 years, on a low dose regimen of 10mg a week. My skin was amazing in that time. It's an impressive drug when it works but treat it with caution. You're doing exactly the right thing by going slowly. It builds up in your system to a cumulative dose so you can afford to go much slower if you like with it.
          My derm also rx'es accutane for lupus - starts at 10 mg / wk or so for that and goes up. Just an fyi! Glad you are finding it ok so far! I still have to find my dose, or combination with antibiotic / ketotifen. Really hope i didn't lose my good foothold with 20 mg acccutane and 500 mg BID flagyl. I honestly don't know what dose of accutane I can handle without an antibiotic, or if it's even worth trying at this point without the antibiotic (5 yrs in for me ... and my new doc says, let's see if we can carve out one of the working drugs for you [flagyl]? Whhhhhhyyyyy ... Maybe she doesn't know accutane can cause flushing?) (If that's confusing, the number of docs I have, I still have appts with my CA docs who I trust more since I've seen them longer, and they've known my skin longer, but have moved out of state since and am trying to find local care.) I'm honestly surprised you noticed a difference after a single dose of ~5 mg, but that's great!

          hope it keeps going well for you.

          edit - I didn't realize you were on accutane that long with things being good. But you do think accutane triggered rosacea and possibly lupus for you? (not doubting you, just curious).
          Last edited by laser_cat; 20 February 2021, 12:24 AM.

          Comment


          • #6
            Originally posted by Katt View Post
            Thank you both for sharing that info. Right now my biggest issue is pustules.

            How are you all managing to cut doses down? I'd like to try this as well. It seems like I can only get 10 mg pills as the lowest dose. Think I'll be taking Amnesteen. How can you make your own dose? I think these are capsules so it might be an issue.
            I just cut 10 mg capsules with scissors, save the other half in the fridge or throw it away. Hopefully that doesn' alter the efficacy of anything. Getting them out of the over-the-top packaging is the hard part (for me at least) (I appreciate how there is a pic of a preg woman on the back of every pill with a red x through it...oh, i think we got the memo, by now...)
            Last edited by laser_cat; 20 February 2021, 12:16 AM.

            Comment


            • #7
              Originally posted by Katt View Post
              Thank you both for sharing that info. Right now my biggest issue is pustules.
              How are you all managing to cut doses down? I'd like to try this as well. It seems like I can only get 10 mg pills as the lowest dose. Think I'll be taking Amnesteen. How can you make your own dose? I think these are capsules so it might be an issue.
              Never mind, I was thinking about tablets, not capsules. This is only for tablets:

              Pill Splitter
              Last edited by Brady Barrows; 20 February 2021, 10:01 PM.
              Brady Barrows
              Blog - Join the RRDi


              Comment


              • #8
                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.

                Comment


                • #9
                  Originally posted by laser_cat View Post
                  My derm also rx'es accutane for lupus - starts at 10 mg / wk or so for that and goes up. Just an fyi! Glad you are finding it ok so far! I still have to find my dose, or combination with antibiotic / ketotifen. Really hope i didn't lose my good foothold with 20 mg acccutane and 500 mg BID flagyl. I honestly don't know what dose of accutane I can handle without an antibiotic, or if it's even worth trying at this point without the antibiotic (5 yrs in for me ... and my new doc says, let's see if we can carve out one of the working drugs for you [flagyl]? Whhhhhhyyyyy ... Maybe she doesn't know accutane can cause flushing?) (If that's confusing, the number of docs I have, I still have appts with my CA docs who I trust more since I've seen them longer, and they've known my skin longer, but have moved out of state since and am trying to find local care.) I'm honestly surprised you noticed a difference after a single dose of ~5 mg, but that's great!

                  hope it keeps going well for you.

                  edit - I didn't realize you were on accutane that long with things being good. But you do think accutane triggered rosacea and possibly lupus for you? (not doubting you, just curious).
                  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.

                  Comment


                  • #10
                    Originally posted by Katt View Post
                    Thank you both for sharing that info. Right now my biggest issue is pustules.

                    How are you all managing to cut doses down? I'd like to try this as well. It seems like I can only get 10 mg pills as the lowest dose. Think I'll be taking Amnesteen. How can you make your own dose? I think these are capsules so it might be an issue.
                    I've been cutting up the capsules with a knife and then putting the cut halves in a clear empty gel cap. I store it in the fridge so when it's cut the gel inside is more like a jelly than runny, if you see what I mean so it's easier to cut.

                    You can get clear gel caps on amazon. I get the size 00.

                    Hope this helps!

                    Comment


                    • #11
                      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.

                      Comment


                      • #12
                        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.

                        Comment


                        • #13
                          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!

                          Comment


                          • #14
                            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.

                            Comment


                            • #15
                              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

                              Comment

                              Working...
                              X