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  • New member, recently diagnosed

    I've been lurking for a few weeks, so I thought I'd finally register. I've learned a lot already, although some of the threads I've been reading are fairly old. Anyway, I'm female, 52, got diagnosed on my birthday (worst birthday ever)...I have PP rosacea (if that's the right term) and I've already tried doxy for months (when another derm thought it was just acne). So I'm going on Accutane next month, once I prove again that I'm not pregnant

    I'm really scared. Scared it won't work, scared of side effects, and I'm a little concerned about the dosage. First the Dr. said 60 mg a day and I flipped out. We settled on 40 but I'm thinking I might just take one of the pills (20). Even that seems high for rosacea? But I do have a lot of pustules right now...it's just that they don't seem like "real" acne. Hoping accutane will still work on that.

    Anyway, hi everyone. I'll probably have a lot of questions. Like...should I be thinking about messing with my dosage already?

  • #2
    My advice would be to evaluate your diet before hitting meds. There is NO quick medication fix !

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    • #3
      Katt,

      You should read this post on low dose isotretinoin to get up to speed. High dose isotretinoin has possible issues. In short term it may help, but long term is something to carefully consider.
      Brady Barrows
      Blog - Join the RRDi


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      • #4
        Originally posted by Brady Barrows View Post
        Katt,

        You should read this post on low dose isotretinoin to get up to speed. High dose isotretinoin has possible issues. In short term it may help, but long term is something to carefully consider.
        Thank you Brady, that's very helpful. I'm going to bring all this to show the derm, but if I have to, I'll probably just adjust the dose myself. I know I read older posts about splitting capsules, but I don't know what form it comes in now. But it also looks like it's possible to do an every other day thing as well.

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        • #5
          Originally posted by Katt View Post
          I've been lurking for a few weeks, so I thought I'd finally register. I've learned a lot already, although some of the threads I've been reading are fairly old. Anyway, I'm female, 52, got diagnosed on my birthday (worst birthday ever)...I have PP rosacea (if that's the right term) and I've already tried doxy for months (when another derm thought it was just acne). So I'm going on Accutane next month, once I prove again that I'm not pregnant

          I'm really scared. Scared it won't work, scared of side effects, and I'm a little concerned about the dosage. First the Dr. said 60 mg a day and I flipped out. We settled on 40 but I'm thinking I might just take one of the pills (20). Even that seems high for rosacea? But I do have a lot of pustules right now...it's just that they don't seem like "real" acne. Hoping accutane will still work on that.

          Anyway, hi everyone. I'll probably have a lot of questions. Like...should I be thinking about messing with my dosage already?
          Did the dermatologist check you for the common, microscopic Demodex Skin Mites? The demodex mites eat skin oil and are an extremely common causes of Rosacea P&P. If its demodex, topical Soolantra cream (1% Ivermectin) for a mild case or the 2 week, 2 drug combined oral therapy (Oral Ivermectin + Oral Metronidazole) would be more effective and likely far safer than the Accutane. Accutane severely reduces the amount of oil produced by your skin. The oil reduction can starve off a large portion of the mites. But many with demodex rebound after going off the Accutane. The Ivermectin and Oral Metronidazole products on the other hand, kill the mites directly.

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          • #6
            Originally posted by ElaineA View Post
            Did the dermatologist check you for the common, microscopic Demodex Skin Mites? The demodex mites eat skin oil and are an extremely common causes of Rosacea P&P. If its demodex, topical Soolantra cream (1% Ivermectin) for a mild case or the 2 week, 2 drug combined oral therapy (Oral Ivermectin + Oral Metronidazole) would be more effective and likely far safer than the Accutane. Accutane severely reduces the amount of oil produced by your skin. The oil reduction can starve off a large portion of the mites. But many with demodex rebound after going off the Accutane. The Ivermectin and Oral Metronidazole products on the other hand, kill the mites directly.
            Before I tried Accutane, I tried 500 mg BID flagyl and an ivermectin course. The ivermectin course didn't do anything but my doc said the number of mites on skin doesn't correlate with immune response to them. He said this was low hanging fruit to try (safe) - I have no pp really (maybe if you squint??) and I had no side effects from the ivermectin.

            The flagyl - yes, it makes me a little dizzy, tired, brain fog but not a big deal. It helps me. I was told it can be combined with accutane anyway. (Azithromycin can be combined iwth accutane too). I had one doc say, he had no problems with me taking flagyl for life - sometimes it is the only thing that works for rosacea.

            Anyway, you can cut the capsules however you want to start. Get multiple opinions. One derm suggested I start 10-30 mg / wk. He thought since I'm sensitive to meds, since it can make someone flush, that 20 mg / day (rec by another derm who did not acknowledge it could make someone flush) was pushing the envelope. He said to start low, since too much can trigger inflammation and a disease flare and thus sour the medication for the future. YOu should get the anti-inflammatory effects in 1-2 months ... i was told anyway.

            I am 50 kg. I was told the ideal dose is 1 mg / kg / day - but read in rosacea it might be a little lower because of the TEWL dryness factor. So going slow, whatever you can tolerate. I know a rosacean who went up to 60 mg / day no problem. probably depends on your current level inflammation. My target is 40-60 mg / day for a 6 mo course.

            Anyway I understand you are scared. Accutane scares me too since it is harsh on the body. wishing you luck

            I've read at least 1 paper of 20 mg accutane / dya for rosacea. Some with 10 mg accutane / day for rosacea .. idk the literature and derms don't really seem to agree on rosacea dose. FWIW my friend on 60 mg / day says each dose increase seems to plateau as far as benefits. They wanted a supramaximal effect and then taper to maintenance dose.

            Some people respond to azithromycin better than to doxy just fyi.

            If you ask for 10 mg's, you can maybe take 10 every other day, then every day, then increase to 20, etc. I think the smallest it comes in (without compounding?) is 10 mg. Doc wnated me to start with 20 mg /day, i just asked for 10's.
            Last edited by laser_cat; 27 January 2021, 07:41 PM.

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            • #7
              Thanks for the responses everyone. ElaineA I am actually on Soolantra right now. And taking Bactrim. If anything, things are getting worse.

              Laser Cat, I'm also 50kg. I am going to advocate for starting with 10/day, which is a far cry from the 40 my derm wants. If he ends up just giving me an rx for 20 twice a day, maybe I'll start with 20 every other day to see how it goes. Or can you actually cut them in half? I know I read somewhere on this forum someone was cutting capsules and putting the halves in empty capsules.

              And I'll ask about the azithromycin. I had not heard of that option, thanks!

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              • #8
                Originally posted by Katt View Post
                Thanks for the responses everyone. ElaineA I am actually on Soolantra right now. And taking Bactrim. If anything, things are getting worse.

                Laser Cat, I'm also 50kg. I am going to advocate for starting with 10/day, which is a far cry from the 40 my derm wants. If he ends up just giving me an rx for 20 twice a day, maybe I'll start with 20 every other day to see how it goes. Or can you actually cut them in half? I know I read somewhere on this forum someone was cutting capsules and putting the halves in empty capsules.

                And I'll ask about the azithromycin. I had not heard of that option, thanks!
                Yeah I just cut the 10 mg in half with scissors. Haven't tried to quarter them for 2.5 mg increments, I suppose that might be possible.

                I was on a steady dose of flagyl 500 mg BID and then started 5 mg accutane / day for several days, then 10 mg accutane / day for several days, then 20 mg accutane / day for several days.I had to stop for unrelated reasons but hope to restart soon, the same regimen. Honestly, i'm not your doc, but if you are 50 kg and dealing with rosacea pustules (not solid edema, which seems like it needs a higher dose at least 40 mg accutane / day) then starting at 40 mg accutane / day sounds ridiculous. One derm did say though that he always ALWAYS starts people generally (acne, etc) with at least 0.5 mg accutane / kg/ day. maybe ask your derm if s/he's heard of bad reactions to accutane (or other derms). Also, purging, more acne, more inflammation etc I think tends to happen a few weeks in. I could feel it pushing out all the dead skin cells almost literally at the 1.5 wk mark, which made my skin VERY itchy.

                Idk, i've been on a lot of stuff, but accutane seems to be the most powerful drug because it feels like it restructures the skin maybe? So I'd try to make it work if you can, even if it means slower titration and more time for a positive effect. my 2 cents
                Last edited by laser_cat; 28 January 2021, 02:13 AM.

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                • #9
                  Originally posted by Katt View Post
                  Thanks for the responses everyone. ElaineA I am actually on Soolantra right now. And taking Bactrim. If anything, things are getting worse.

                  Laser Cat, I'm also 50kg. I am going to advocate for starting with 10/day, which is a far cry from the 40 my derm wants. If he ends up just giving me an rx for 20 twice a day, maybe I'll start with 20 every other day to see how it goes. Or can you actually cut them in half? I know I read somewhere on this forum someone was cutting capsules and putting the halves in empty capsules.

                  And I'll ask about the azithromycin. I had not heard of that option, thanks!
                  How long have you been on the Soolantra? It can take 16 weeks for the topical to work completely. The topical Soolantra treatment is slower than the 2 week, 2 drug oral treatment. If demodex are the primary problem, it usually does get worse before it gets better. The first few weeks on Soolantra can look worse as the mites start dying off. That is viewed as a good sign that the Soolantra is working. Soolantra contains 1% Ivermectin, which kills the mites. As the mites die off, they make pustules. In the case of demodex the pustules are not caused by much if any bacteria. There may be some bacillius oleronius, a bacteria associated with demodex. The pustules primarily contain dead mites.

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                  • #10
                    I've been on the Soolantra a few weeks now. I definitely don't think these pustules are from any bacteria, or are regular acne. For some reason I think it's a kind of autoimmune response, like white blood cells attacking my skin. I'd prefer it were the mites, though...that sounds easier to get rid of. Is there a test for that?

                    I did talk to my derm today about lower dose Accutane, and they said okay. So that's good. Just wish I didn't have to wait another 3 weeks to prove I'm not pregnant again.

                    Comment


                    • #11
                      Originally posted by Katt View Post
                      I've been on the Soolantra a few weeks now. I definitely don't think these pustules are from any bacteria, or are regular acne. For some reason I think it's a kind of autoimmune response, like white blood cells attacking my skin. I'd prefer it were the mites, though...that sounds easier to get rid of. Is there a test for that?

                      I did talk to my derm today about lower dose Accutane, and they said okay. So that's good. Just wish I didn't have to wait another 3 weeks to prove I'm not pregnant again.
                      Ah, the Soolantra may be working! I'm basing that remote guess on the following. Demodex skin mites live on a 2 to 3 week cycle. During the first few weeks on Soolantra more mites are dying all at once than usual thanks to the Ivermectin in the Soolantra. Very typical for it to look worse at this stage. But that also means the Soolantra is working. Since you have to wait 3 weeks anyway, keep using the Soolantra. By the end of that 3 weeks you and your doctor may decide that you don't need the Accutane after all. Accutane has a history of serious side effects. Low dosage is definitely better than higher doses of Accutane due to those side effects. Demodex skin mites are extremely common, virtually all adults have them. Quite a few of us have too many demodex causing skin issues. An over population of demodex is quite possibly due to the immune system being down due to illness like the flu or stress. A healthy immune system keeps the demodex population in check. Demodex is easier to fix than an autoimmune problem.

                      Yes, there are tests for demodex skin mites. They collect a small skin sample one of 2 different ways. Either they do a light skin scraping or they put some sticky glue on a microscope slide. Then place the slide on your skin, wait a minute and pull the slide off. Its about like using a pore strip. Either way the goal is to collect a sample, get it onto a microscope slide. Once they get the slide in the microscope, they try to count the number of demodex skin mites. If you have more than a "normal" number of demodex per square centimeter of skin, demodex is likely causing your skin issues. This test is a little tricky to get an accurate result since the mites do not like bright light and scuttle to the edge of the slide making it difficult to get an accurate count. A knowledgeable dermatologist knows how to do the test. Some know how but decide to skip the tricky test and treat for demodex to eliminate that possibility.

                      If the problem is demodex there is a safe, 2 week, 2 drug combined treatment with cheap generic Oral Ivermectin+Oral Metronidazole that is highly effective at greatly reducing or eliminating Demodex everywhere on your body. I finally had to take the combined drug oral treatment to get a many decades long battle and serious skin and ocular rosacea issues with the evil mites under control. It worked for me.

                      Treatment with topical Soolantra takes 16 weeks total to be effective and is best for milder localized cases. Soolantra isn't recommended for demodex caused eye issues Ocular Rosacea / blepharitis demodex.

                      Treatment with Accutane may take months as well. Accutane greatly reduces the production of skin oil and leaves the skin thin and fragile. Accutane starves Demodex and greatly reduces their primary food source, the oil in our skin. However, Accutane doesn't kill the mites directly, it just starves the population down. The mite population may rebound after going off Accutane and the skin problems may come back.

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                      • #12
                        I'll keep trying with the Soolantra then. But the pustules I get are enormous, I have about 4 really large ones right now. So not a ton, but very large. It's so depressing.

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                        • #13
                          Start eating healthy products and only then try some medicines

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                          • #14
                            I started a diet and I feel a bit better and I start to see results

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                            • #15
                              Hello everyone!

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