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Roaccutane Experience + Updates -- BRACEYOURSELF

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  • #16
    Hello everyone, it's the 6th of the month so time for my regular update on my Roaccutane (Isotretinoin) treatment. It's day 183 and exactly 6 months from the day I started on Jan 6th. In those past 6 months my acne has gone from10+ whiteheads and/or cysts a day down to 1 whitehead a month if not nothing. So while it hasn't completely cleared (just yet), it's made acne a non-issue in my life currently.

    Starting with my recent GP visit I told him that I hadn't had any whiteheads or cysts since I'd last seen him. I.e. from May 21st to June 25th. Although I did have some temporary (i.e. few hours) red marks which I can't rule out as being acne. Anyways, his rule was that one month without proper acne means that we can start to lower the dose as it seems to be working. He wanted to reduce it by 10mg each month, which I found ridiculous especially since I'd pushed to keep going for longer on the upper cumulative dose limit than he had liked. And 6 months is the average time to stop Roaccutane so it's perfect timing I thought to even just cut it off cold. But he wants to decrease the chance of my acne coming back so I agreed to reduce my dose by 10mg each week from 70mg. This makes the side effects far more manageable and I can hopefully have some time to enjoy the remainder of the year off this awful treatment. So I'm hoping to take my final pill around August 22nd. Not January like he had wanted. And since I'm now decreasing my dose he didn't take a blood test and won't again I don't think.

    Surprisingly he was very receptive to me asking for a chronic pain medication and eye drops which I'll apply to the skin. I haven't collected either at the pharmacy yet. I'm going to wait until I'm off Roaccutane before trying the pain meds because I want to see what my pain levels are without it. And they affect the brain too so I'm not so keen on the idea. I wanted a topical gel like Lidocaine to target the skin only, which I'd read a success story about in a study. Regarding the eye drops I read in other studies that people without access to Mirvaso went with Alphagan eye drops applied to the skin because it worked just as well. While I do have access to Mirvaso I tried it in the past and it increased my overall redness ironically. I want to try the same active ingredient (brimonidine) but in a different form factor. I need to try something to fight this insane redness after all.

    In other news I was finally able to take the CT scan to check the nasal pain. According to the written report I have "large retention cysts on left maxillae" approx 4cm in size, as well as "minor nasal septal deviation to the right with some narrowing." So a retention cyst and a deviated septum. I'm going to revisit my GP in the next 10 days and ask him what the significance is regarding my pain and if I need surgery. Honestly, I'm glad the scan picked something up because this chronic pain has been completely invisible until now. Will update on this next month.

    How it's going
    So my acne is a non-issue now as I said. No cysts since late March/early April and only one whitehead in the past month and a half. I have to credit Roaccutane for this but also the Erythromycin antibiotic which I believe played a major role during the recent 4 weeks that I took it. Time will tell if I go back to 6 whiteheads a week but so far only a single, small whitehead on the edge of my nostril a few days ago. Otherwise completely acne free in the past month and a half. So that is incredible and once again I never thought it would be possible to even momentarily suppress it to this level. So that's amazing for sure. My skin's complexion looks a lot more smooth with the scars fading slightly as there's nothing replacing them. The acne on my hairline disappeared a while ago and I was able to get a skin fade haircut without revealing acne!

    What I'm fearing though is that this is all temporary. Because like I said I'm still getting the rare whitehead so some oil glands still have the potential to secrete acne. And remember I'm on Roaccutane. What happens once I've finished the treatment? One day later? One month? One year? Surely I'm doomed in the long run if 6 months of non-stop Roaccutane and one month of an antibiotic still produces a whitehead. But I guess I'll cross that bridge when it comes to it. I should just appreciate the 'acne-free' skin for as long as I have it.

    What's ruining this fun is my worsened rosacea. It's still extremely inflamed and red, but perhaps 10% less bad than the previous period. My cheeks still get burning red hot to the point that the pores open wide to release all the heat. I have so many new capillaries that are forming in circular clusters at the tops of my cheeks mostly. Each cluster is the diameter of a golf ball, so it's not insignificant. I can't walk into any rooms now without a deep hot flush. Before Roaccutane this maybe happened once every few months and it was manageable. Now it's almost every room every day. I can't sit down and talk to people easily anymore due to the intense flushing. It feels like the blood is searing my cheeks.

    The redness threshold even on the best of days in the best of conditions is terrible. It's why I can't be fully happy with my 'smooth' complexion because I'm just so unnaturally red that I can't help but look uncomfortable even when I'm relaxing. Thankfully the pulsating nose thing doesn't really happen any longer, and I'm able to physically exert myself a bit more than the past months, but the extra redness continues on. Some days it makes me so bitter, angry and sad I could just go berserk. But I'll have the eye drops to fight the redness and once I'm off Roaccutane perhaps it can get closer to what it looked like before Roaccutane. Not that my rosacea was good back then but it was better.

    The nose side effects were leveling out but then in the last week I've got a super dry nose again. Not sure what's caused this but I did temporarily drop my Roaccutane dose for two straight weeks to facilitate my travels as you'll see further below. Even right now my nose is very dry and blocked. Since the end of June a new pain had developed with a different type of electrical pain that was focused on the upper right side of my nose. This faded away a few days ago however. Is all this related to my deviated septum and the retention cyst? Who knows tbh. I'll have a better idea after seeing my GP again.

    Quick list of the new side effects I recorded plus updates on previous:
    • Day 133 (7 June) – peeled skin, redness beneath lacrimal caruncle.
    • Day 133 (7 June) – elbow is constantly dry with peeling skin. Also a red bump above my left elbow. Has been like this for weeks.
    • Day 139 (9 June) – same lip marks as day 102
    • Day 147 (25 June) – capillary electrical pain top right of nose with slight increase in redness. Looks like I had sunglasses on my nose.
    • I'm almost certain that the red dots/blotches under my eyes are caused by insufficient sleep. Even one night of 5h sleep can cause this bruising effect. Takes a few days of good sleep to completely disappear.

    I've not missed any day on Roaccutane yet but I did drop from 70mg to 30mg for two weeks because I didn't want to suffer so badly on my holiday. I started eating a bit more 'healthier' at the end of May by avoiding common foods with high gluten, a high glycemic index and high histamines as best as I can. I'm not being super strict about it but I am making the effort to reduce things that could worsen acne in general. Will continue as it's not so hard to do.

    Here's a quick rundown of the dosage per week so far:
    • Week 1 (6 Jan - 12 Jan) – 10mg/day (1 pill of 10mg Roaccutane)
    • Week 2 (13 Jan - 19 Jan) – 20mg/day (2 pills of 10mg Roaccutane)
    • Week 3 (20 Jan - 26 Jan) – 30mg/day (3 pills of 10mg Roaccutane)
    • Week 4 (27 Jan - 2 Feb) – 40mg/day (2 pills of 20mg Isotretinoin)
    • Week 5 (3 Feb - 9 Feb) – 40mg/day (2 pills of 20mg Isotretinoin)
    • Week 6 (10 Feb - 16 Feb) – 40mg/day (2 pills of 20mg Isotretinoin)
    • Week 7 (17 Feb - 23 Feb) – 40mg/day (2 pills of 20mg Isotretinoin)
    • Week 8 (24 Feb - 1 Mar) – 40mg/day (2 pills of 20mg Isotretinoin)
    • Week 9 (2 Mar - 8 Mar) – 50mg/day (2 pills of 20mg, 1 pill of 10mg Roaccutane)
    • Week 10 (9 Mar - 15 Mar) – 40mg/day (2 pills of 20mg Roaccutane)
    • Week 11 (16 Mar - 22 Mar) – 50mg/day (2 pills of 20mg, 1 pill of 10mg Roaccutane)
    • Week 12 (23 Mar - 29 Mar) – 50mg or 60mg/day (2 pills of 20mg, 1 pill of 10mg [or 3 pills of 20mg] Roaccutane)
    • Week 13 (30 Mar - 5 Apr) – 60mg/day (3 pills of 20mg [on 31st - 2x10mg + 2x20mg] Roaccutane)
    • Week 14 (6 Apr - 12 Apr) – 60mg/day (3 pills of 20mg Roaccutane)
    • Week 15 (13 Apr - 19 Apr) – 60mg/day (3 pills of 20mg Roaccutane)
    • Week 16 (20 Apr - 26 Apr) – 60mg/day (3 pills of 20mg Roaccutane)
    • Week 17 (27 Apr - 3 May) – 40mg or 60mg/day (3 pills on 27th, then 2 pills of 20mg Roaccutane)
    • Week 18 (4 May - 10th May) – 40mg or 70mg/day (2 pills of 20mg on 4th and 5th, then 1x10mg + 3x20mg Roaccutane)
    • Week 19 (11 May - 17 May) – 70mg/day (3x20mg + 1x10mg pills Roaccutane)
    • Week 20 (18 May - 24 May) – 70mg/day (3x20mg + 1x10mg pills Roaccutane, started Erythromycin antibiotic on 23 May 4x250mg each day)
    • Week 21 (25 May - 31 May) – 70mg/day (3x20mg + 1x10mg pills Roaccutane)
    • Week 22 (1 Jun - 7 Jun) – 70mg/day (3x20mg + 1x10mg pills Roaccutane)
    • Week 23 (8 Jun - 14 Jun) – 30mg/day (1x20mg + 1x10mg pills Roaccutane)*
    • Week 24 (15 Jun - 21 Jun) – 30mg/day (1x20mg + 1x10mg pills Roaccutane)*
    • Week 25 (22 Jun - 28 Jun) – 70mg/day (3x20mg + 1x10mg pills Roaccutane)
    • Week 26 (29 Jun - 5 Jul) – 60mg or 70mg/day (3x20mg + 1x10mg, 3x20mg on 5th pills Roaccutane)**
    • Week 27 (today - ) – 60mg/day (3x20mg pills Roaccutane)
    *decreased to 30mg/day 1 week before trip and then during to ensure I didn't have too many side effects during this time.
    **The beginning of the end. On July 5th I went down to 60mg and will continue decreasing it roughly each week.

    ​Cumulative total is 8870mg, averaging 48.5mg/day.​