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Roaccutane Experience + Updates -- BRACEYOURSELF

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  • Roaccutane Experience + Updates -- BRACEYOURSELF

    It's been a long, long time since I last posted on this forum. I don't even scroll through others' posts that often either. My reasons are the same as for everyone: nothing works and no one can help so why bother? Yes that's right, so I've now had untreatable acne for roughly 12 years and untreatable rosacea as well as seb derm for 8 years. As you can read in my previous posts (I won't list my previous treatments here) nothing is able to slow it down and it's just getting worse with age (27y).

    The nose pain is still present, even if it's less frequent, and back in early 2022 I developed a permanent bump the size of a small pea on my jaw line which is probably a swollen lymph node caused by acne scarring. Redness still covers my face all day every day, especially around my cheeks and nose. Visible capillaries are everywhere. My forehead continues to be the least affected area on my face.

    Anyways I've still been very active and am leading a more than decent life DESPITE all of this. I've ticked a lot of life-long bucket list items since the start of 2022 and have grown a YOLO mentality, which is freeing but also potentially destructive... Which brings me on to Roaccutane (i.e. Accutane). I was probably first offered the medication around 2017 but I'd have never taken it back then because of how young I was. The side effects and horror stories are bad enough for those who only had acne but with my rosacea and seb derm it could be particularly risky. So I waited and waited until I racked up some life milestones and experiences in case this medication literally kills me. So yeah, with those boxes checked and my acne/rosacea/seb derm continuously getting worse I'm now ready to say f*ck it why the hell not?


    Treatment Basics
    I'll be taking Roaccutane 10mg (isotretinoin) soft capsules each day at the end of a fatty meal. One 10mg capsule each day for the first week, then 2x 10mg (=20mg) capsules for second week and finally 3x 10mg (=30mg) capsules. So a gradual increase of 10mg per week. Normally the isotretinoin dosage starts at 0.5mg/kg/day, which would be around 35mg for my weight, however I think my GP is just trying to be careful.

    I'll be taking a blood test every month to check on my vitals for signs of liver or kidney failure etc. My first prescription only lasts 3 weeks with 42 capsules in total. As I'm planning to take my first capsule on January 6th this means I'll run out before January 27th and will likely need to do the blood test a few days prior to not miss out on my next prescription. Of course, if the blood results aren't promising then I will need to stop the treatment. According to the leaflet the treatment usually lasts 16-24 weeks, so around 3.5-6 months. Although I have a fear this might last longer especially with the slower start.


    Updates
    So the whole reason I'm posting this publicly is because I want to document and share the entire journey I'll be experiencing while on Roaccutane. There aren't many detailed testimonies from people on Roaccutane, especially from a male's perspective, so I'll try to be as detailed as I can. I'll be writing notes on the side effects, theories, health+lifestyle changes and of course the changes in my skin. I'll probably summarize these notes and post them once a month along with some photos, which should be the most helpful thing for others to see.

    If you've previously taken Roaccutane or you're currently on the medication then feel free to post below.

  • #2
    Hi, thanks. So your main problem is redness on cheeks and some bumps? Have you tried laser? How it is goiing so far? Do you some reduction in redness or at least in flare ups?

    Comment


    • #3
      Originally posted by bear001 View Post
      Hi, thanks. So your main problem is redness on cheeks and some bumps? Have you tried laser? How it is goiing so far? Do you some reduction in redness or at least in flare ups?
      The Roaccutane is for acne only but if you're wondering about my rosacea then yes it's primarily redness that I have. I don't have the treatable type of rosacea with bumps. Yes I've tried a 1068nm laser I think it was. It didn't do anything other than scar my nose unfortunately. I've never been able to reduce the redness in my face over time no.

      Comment


      • #4
        Hello I'm back. It's been one month since I started on my Roaccutane treatment (January 6th). Day 32 if you want me to be exact. It's still very early in the treatment process so I've neither experienced anything great or terrible happen. My first prescription which lasted for the first 3 weeks had me taking the Roaccutane brand pills, but on my second prescription the pharmacy didn't have enough I think so I've been on generic Isotretinoin for the past week and a half. Even though I dislike the idea of taking two variations of the same medication, I was just thankful that they stocked any of it since I'd otherwise have to wait until it shipped. And yes in case you're wondering my blood test results in late January came back okay so I was able to continue. Although for some reason my GP only let me increase the dosage by another 10mg for the entire prescription period. So I'm stuck at 40mg/day until the end of February which is the next time I'll have my blood tested.

        Here's a quick breakdown of the dosage each 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 - today) – 40mg/day (2 pills of 20mg Isotretinoin)
        I personally don't understand how the rate of the dosage is meant to increase though. Am I meant to go to 1mg/kg body weight to my own weight no matter what? Do I stop earlier if I get really severe side effects? And if so, do I reduce the dosage back to a more tolerable dosage or give up entirely? What about staying for example at 40mg... I won't know if it's working until 6 months so how can I ask to increase the dosage if it might not be necessary?

        Anyways here's the promised summary of negative side effects I've experienced these past few weeks:
        • Day 5 (10 Jan) – noticeably having more deep, cystic inflamed acne rather than the usual whiteheads
        • Day 8 (13 Jan) – tightness of the lips but no visible dryness yet
        • Day 10 (15 Jan) – aching joints on fingers and toes. However I can't rule out chilblains since it's been very cold
        • Day 11 (16 Jan) – Definitely can say that my nose is a bit more red than usual
        • Day 12 (17 Jan) – Blowing my nose now produces blood but no nose bleeds with flowing blood. I had a head cold late January which helped with my nose being dry and since then I still see blood when blowing my nose but it doesn't seem as bad as before
        • Day 13 (18 Jan) – A small piece of skin at the top of my ear peeled off and was bleeding slightly. 1x1mm in size. Honestly not sure if this was caused by a scratch but it was weird
        • Day 15 (20 Jan) – Noticeably more red in the face especially the nose. Not around my neck or elsewhere.
        • Day 17 (22 Jan) – Lips are definitely dry now. No bleeding but using plenty of lip balm. Although this has mostly gone back to normal since February.
        That pretty much sums up the major side effects I've experienced at this point. There were a few days maybe around 2 weeks in where I thought my eyes felt slightly dry but that went away so fast it could've just been an environmental factor due to the dry air and cold temperatures at the time. For me the dry nose side effect has been the most prominent so far. It worsened my 'nose tingling' I've talked about before and the constant blood when blowing my nose isn't great. Not sure if I've purged at all yet, since I get acne every day, but the worst so far was around Jan 16th so I'm hoping that was it lol. Some minor muscle soreness but I'm working out a lot and it's not stopping me from doing daily tasks so I don't mind it. One odd thing I'll mention to my GP however is dull soreness from my right pec beneath the nipple. No lumps or anything, just a soreness even when I'm just sitting down doing nothing. It's distracting and slightly unnerving.

        I guess I'll add some positive observations to balance things out. So as previously mentioned the number of whiteheads has been decreasing. This would be a win if it weren't for the fact that they're being partially replaced by cystic acne which lasts longer. The turnaround on my acne is both faster and slower: if it's a rare whitehead then it'll pass quickly, if it's cystic acne then the inflammation lingers for longer imo. But it's still nice to have less whiteheads per day. If the gifs below are loading you can see that above my left eyebrow there's been an improvement in the scale and severity of the acne there.

        One cool thing I almost immediately noticed was a dryer face, which sounds bad but honestly my face is usually so greasy it actually feels more normal now. This is definitely due to the Roaccutane and not environmental or by chance. Before I'd be fully greased up by noon. If I swiped my finger on my cheek I'd have this thick grease that didn't go away by rubbing it. Now there's practically none of the same grease and don't have a shiny face by the end of the day. This is despite all the extra moisturizing I'm doing, so it's really obvious that Roaccutane is reducing the oil/grease.

        That reminds me, I haven't really spoken about my daily routine much. I take the Roaccutane right after lunch or dinner. Even if it's several pills I'll take them all at once instead of splitting it between two meals. I've been taking it with fatty meals as recommended so almost always a meal with meat and/or dairy. I swallow the pills with either milk or cold coffee to further increase the absorption rate.

        I moisturize my face with Avene in the morning and at night as I've always done. Sometimes if my face is looking a little dry I might add some during the day but nothing crazy. I've also been using nasal sprays when my nose feels very dry but once again this is something I usually do. To clean my face I'm using basic Garnier diluted water because it helps keep my face hydrated. I haven't touched my eye drops or Vaseline yet but I do use my lip balm from Bull Dog. My lips are getting less dry each day but I can't say with absolute certainty that the lip balm is doing that. It could just be an environmental effect.

        So that's my recap for the first month. Not expecting much to happen for the rest of February because I'll still be on 40mg/day. I'll try to increase the dosage if my GP allows it. Guess it depends on the side effects and blood tests. Honestly wouldn't mind the 70mg/day if they let me do it.
        Attached Files
        Last edited by BraceYourself; 8 March 2024, 10:52 PM.

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        • #5
          Hi, maybe you should try lower dosage (5 - 10 mg per day)? 40mg per day is quite high and it can cause worsening redness.Have you noticed increase in flushing or only more redness in you face?

          Thanks

          Comment


          • #6
            Originally posted by bear001 View Post
            Hi, maybe you should try lower dosage (5 - 10 mg per day)? 40mg per day is quite high and it can cause worsening redness.Have you noticed increase in flushing or only more redness in you face?

            Thanks
            I started on 10mg for the first week but my GP agreed that due to my acne's severity and persistence we would need to raise it higher without waiting 6 months on a low dosage. I actually want to raise it further because I heard that 2x body weight in kg is the max (i.e. 140mg/day). So the ceiling is still far away.

            Yes the redness is more pronounced on the average day. Although the worst days have passed I think. Weeks 2-4 my baseline was pretty bad and my face/ears felt very warm. It's strange that by increasing the dosage those side effects have become less of a problem now.

            Comment


            • #7
              It's March 6th which means it's been 2 months (61 days) since I started my Roaccutane treatment. In short, not much has changed in the past month after my previous post. I finished the 40mg of the generic Isotretinoin at the end of February and now I'm back on the Roaccutane brand but at 50mg. I insisted to my GP that I should go even higher but he seems to be fixed on some sort of cumulative approach to the medication. So the higher the dose the faster I reach a calculated turning point where I'll need to start gradually reducing the dose each month/week. Because according to him I shouldn't go past a certain cumulative amount (let's say 5000mg) and he thinks doing a low dose over a longer period is more likely to get rid of the acne than a high dose over a shorter period. Well I personally think a higher dose over a longer period would be best no?? I don't want to stop for some arbitrary number if I've not seen the results yet, because he might want to ramp it down as early as the end of April. And it would be very frustrating to give up early if my body isn't experiencing any crazy side effects.

              Although speaking of which, I've been asked to take one pill of Ferrograd Folic per day because of a decreasing haemoglobin count that was picked up in my last blood test. It's more of a preventative measure though. I'm still far away from anemia at 12.8g/dl when the healthy range is 13-18g/dl. So taking this iron supplement should resolve it before anything happens.

              What effect is Roaccutane having on my acne and face? Well acne production is certainly MUCH lower now. On average in the past I would get maybe 5 whiteheads a day and a few minor cystic spots a week. Now I'm getting only 1 whitehead a week I'd say (but I'm still getting them ffs) and one cystic spot a week. But even though I continue to get some acne it's nice to not have to constantly manage my acne several times a day. Now there are entire days I don't need to handle my acne which was unheard of before Roaccutane. The same goes for the oil/grease that I used to have. I don't have to worry about wiping it all off before a night out because the oil production has slowed a lot. Thankfully there is still a bit of natural oil in my skin so I'm not needing to use loads of moisturizer.

              That said my face continues to be fairly red. The new cysts are deeper and take longer to emerge (if at all*).so that sucks. I guess the redness is more of a rosacea problem but I would've thought my complexion would look less 'angry' since the daily acne is basically a thing of the past and this should give the skin time to heal. So at two months in I can say that Roaccutane has somewhat improved my daily life due to less management but the acne is still very much an issue.

              *I've had what I thought was regular acne turn into some kind of cyst above my left eye that has been there since the end of January. It's very stubborn and doesn't seem like it will disappear maybe ever. I've tried moisturizing it and applying hot compresses but it's still red and 3-dimensional for over a month now. I can see some acne 'balls' trapped beneath the thin eye skin so that's the only hope I have that they come to the surface and then the skin can calm down.

              Anyways here's the breakdown 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 - today) – 50mg/day (2 pills of 20mg, 1 pill of 10mg Roaccutane)
              Cumulative total is therefore 2070mg (34mg/day average).

              Some new side effects include:
              • Day 33 (7 Feb) – dull pain at the top of my spine between the shoulder blades. Resolved this by not straining my back as much during workouts
              • Day 38 (12 Feb) – left eye was irritated and itchy. Used eye drops and the issue disappeared after around 2 weeks, so likely conjunctivitis and not blepharitis.
              • Day 40 (14 Feb) – open wound inside my mouth on the top right side between my cheek and gums. No idea what caused this but it's healing
              • Day 61 (6 Mar) – the skin above the left side of my lips is visibly red and it's feeling more sensitive than the skin around it. My theory is that it's being caused by the lip balm I use to tackle my drying lips. I'm going to be more careful when applying it in the future and just moisturize the area with Avene.
              Another potential side effect is that I'm constantly getting the common cold. I normally get sick every 6 months but I've now had 3 cold since I started in January. It's honestly ridiculous. I'm even sick right now. Some anecdotal stories I saw mentioned that it could be due to the drying of the mucous membranes in the nose, which usually prevent viruses from entering the body, so this is what I think is likely happening.

              I'm attaching a photo from the beginning of February and the most recent one I took in March. As you can see there isn't too much difference in my complexion. (The redness can appear very different based on how bright it was outside at the time or the temperature etc) The acne mark above my left eye shows only a very slight improvement. I'd upload gif timelapses showing each side of my face but I can't figure it out. There's also an upload limit of 5 attachments so that's why the last image is two together.
              Attached Files
              Last edited by BraceYourself; 5 April 2024, 11:09 PM.

              Comment


              • #8
                keep us updated

                Comment


                • #9
                  Thanks for all this information. I appreciate it. It looks like there is a significant improvement in the last photo which compares the profile shots from February and March.

                  Comment


                  • #10
                    Hi again everyone. As promised it's been another month so I'm posting my summary. It'll be Saturday by the time I share this so day 92 of my Roaccutane (Isotretinoin) treatment. Unlike what I said last time about not having experienced many changes throughout Feb/early March, I can certainly say there have been some changes this past month but not necessarily for the better. Many side effects and a slight worsening of acne. However, before I break that down just an update on my recent GP visit.

                    I told him that I was still getting new acne every week or so even if it was just one a week. Because of this he suggested raising my dosage by another 10mg so I'm currently on 60mg/day, which is getting close to the alleged max dosage of 70mg for my bodyweight. I say alleged because I've read online that doses as high as 2mg/kg are acceptable and it seems to be common to at least go slightly above the 1mg/kg limit if the acne persists. So I've agreed to 60mg for now but honestly I'd be happy to be prescribed 100mg/day next time just to really attack whatever bacteria/oil glands are still surviving.

                    My recent blood work came back nominal and so I've stopped having to take the Ferrograd Folic pills since my haemoglobin count is just above the threshold again. Liver, kidneys and fat indicators continue to appear healthy thankfully.


                    How it's going
                    It's difficult. The only good thing I can say about my experience over the past month is that the acne production is still significantly lower than before I started. (And maybe that oil production is far lower but I feel as if it's returning.) Early March I was getting just one whitehead a week at most and no cystic acne at all. However, once I started on 60mg in week 12 I've had 2 cysts and 2 whiteheads already, which is an alarming increase. There's nothing I'm doing that would provoke this so it's likely to be a response to the treatment. The worst thing about it is that I got another cyst above my damn eye. You can see it in the recent photos. It's like the oil glands there don't respond to Roaccutane the same way the rest of the face does. Before Roaccutane I'd maybe only gotten whiteheads in that area like 5 times in 10 years so what the hell is happening!? I'm beyond frustrated.

                    Speaking of my mental health it's not the best. This time last month I felt relatively normal. Now I'm constantly angry and aggressive. Can't work out at the gym without looking like I want to fight someone. I think it's a combination of any direct effect it has on the brain as well as indirectly due to the increased redness and recent acne on my face that is dampening whatever hope I have left. My brain is a bit foggier than before too. Sometimes I forget what I just read. I also feel more tired in general. And on the odd night that I can't sleep I feel twice as tired as I should. If I'm honest at this point I completely believe Roaccutane's suicide connection. No doubt it can mess with your mental state if you're unlucky.

                    About the redness... It's been getting worse since the start of March and was aggravated by hot spells on my cheeks around mid-month. This is around the time I reduced my daily dosage from 50 to 40mg/day (read the dosage section). My nose is redder than before taking Roaccutane as well as my cheeks, which have more defined capillaries towards the base of my eye. Strangely there's now a regular patch of skin the size of a small coin in the center of my left cheek. When at the gym my face flushes deeper than usual imo. The weather around here is normally 10C and you guessed it my face is also more reactive to temperature. Hell I don't really have a single moment in the day, even when I'm completely calm in a climatized room, where my face has the skin tone of December last year. And it looked bad in December.

                    I'm noticing an increase to the intensity of lower back pain when I have it. Usually it's due to excessive training at the gym especially ab workouts which I think are putting stress on my spine and back. The safety guide for Roaccutane does mention a rare side effect called Sacroiliitis. The reason I don't think it's this is because the pain does subside after 2 days if I don't workout. Sacroiliitis is more permanent from what I've read. In any case it's not too much of a problem and I'm continuing to workout just more carefully.

                    Colds are such a nuisance at this point. It's only April and I've lost count of how many colds I've had so far this year. Since the end of January I've had maybe 10 days where I didn't have a sore throat, stuffy nose or cough. And I was sick all of March. Haven't stopped coughing in over a month which isn't too unusual for me but that fact that it's one cold after another is driving me mad. The other day I was able to clearly breathe through my nose and I'd actually forgotten that it was possible. Like my sense of normalcy is so twisted at this point I don't know what living with non-chronic issues even is. My theory from last month that it's due to the drying of the mucous membranes in the nose is what I think is most likely true. There's simply no mucus left to capture a virus and it goes right into my system. I'm sure it'll keep happening until I'm off Roaccutane.

                    My nose overall is probably the biggest issue. Oh man I've had nasal pain for 7 years now but this is something special. I've never had a nosebleed but that's due to my nose being so dry that it solidifies together with mucus and sticks to the nasal walls. For 3 weeks the top front of my nostril was cemented into a position with the hairs acting like rebar lol. At night I would occasionally switch to using my mouth to breathe because of how much effort it was to exhale. Scrunching my nose I could feel the tension of this 'glue' but it would not budge even with nasal sprays. Thankfully these past few days I've had moments where it had completely vanished but it always returns to some degree.

                    New side effects and updates on previous:
                    • That wound at the top of my right gums comes and goes. At the moment it feels like a scar. Can't say Roaccutane caused it but still keeping a close eye on it.
                    • The redness directly above my lips from 6 March went away after about 3 days. This was too quick for the lip balm to have been causing it so not sure what it was in the end.
                    • Day 77 (22 Mar) – Dry flaky skin mainly on the right side of my face - cheek, forehead and eyebrow. This has since disappeared.

                    Routine
                    My daily routine hasn't really changed much. Roaccutane taken with milk after a fatty meal. Garnier diluted water to wipe off any grime each morning and night. Right after I use Avene moisturizer to hydrate the skin. My lip balm is more important these days. Without using it for a day my lips get very dry albeit without cracking or bleeding. They stopped stocking the Bulldog lip balm for men, so I've moved to the generic Nivea ones which leave more of a shine but get the job done. I recently purchased a humidifier after my GP thought it'd be a good idea for my nasal dryness. Too early to tell if it has any effect though. My GP did give me a nasal spray by NeilMed for free. It's slightly better than the basic one from the pharmacy although I still have an extremely dry, irritated nose despite using it once an hour.


                    Dosage
                    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 (beginning today) – 60mg/day (3 pills of 20mg Roaccutane)
                    Cumulative total is therefore 3590mg, which after a month is already 1.5x the previous total but still averaging just shy of 40mg/day at 39mg/day.

                    *As you can see some of the dosages each week were a bit weird this month and I want to be honest about it. Week 10 I was going to travel and was experiencing a hot and reddened face in week 9 so I decided to decrease it down to 40mg/day. Didn't really help because I was still extremely red especially on my nose after my flight. Could've been the lack of humidity or air flow but I'd never been so blotchy red like that before I don't think.
                    **Week 12 I had just been prescribed my new dose of 60mg and since I'd 'saved' 70mg from week 10 I started the higher dosage a few days earlier than waiting until the old prescription finished.
                    ***Week 13 weirdly I think there was an extra 20mg pill laying around so this messed up the symmetry when starting the new prescription. Not sure if there was one too many given to me or somehow I missed taking a 20mg pill but I doubt that since I try to track everything. Anyways I used some more leftover 10mg pills. I still have some left.

                    Last edited by BraceYourself; 5 April 2024, 11:17 PM.

                    Comment


                    • #11
                      Well this website was built in 1782 so it's currently refusing to upload sharp images at a size larger than a postage stamp. No ****ing clue how it worked last time but I just wasted 40 minutes on this and my aggression levels are through the roof. I have to stop. No pictures.

                      andydoyle Thank you. Wish I could upload the comparison images for this last month but it would take a miracle.

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