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Just thought I share my thoughts and experiences and add on to the assortment of personal journeys with acne and Accutane. I know its long but I feel like longer stories allow people to connect to others better who are in the same struggle.
Cliffs Notes:
Andre Male
Ethnicity Black/Asian
Location Maryland, United States
Affliction/affected area Face, back, shoulders, chest, arms, even stomach, butt, legs, and forearms.
Reason/final straw for taking Tane Of course the main reason is Acne but something usually drives some people to the last straw (since Accutane is really supposed to be a last resort). For me it was having my first child. I wanted to be able to do things involving water without being embarrassed or focused on something other than family time.
Prescription Zenatane, 40mg 2x daily.
Summary Have been a victim of acne since the beginning of high school. Used several common OTC products, T.V. products, prescription antibiotics (Doxycycline), prescription foam, and even herbal/natural/home remedies to no avail. Changed diet to go along with regularly healthy lifestyle (exercise/no big medical issues) but that did not work either. Finally made the jump to Accutane (Zenatane) on January 28, 2014. To combat possible side effects Ive taken Osteo Bi Flex, Kirkmans EveryDay Multi-Vitamin WITHOUT Vitamins A & D Hypoallergenic, and NOW Foods Liver Detoxifier & Regenerator. To fight the dryness, Ive used Lubriderm Advanced Therapy Lotion & LypSyl Lip Balm which seem to work best. Ive also used Cerave moisturizing cream, Nivea Kiss of smoothness lip moisturizer, and Aquaphor.
Side Effects Dry/Flaky face especially on ears and cheeks. Dry lips (just peeling, no cracks or bleeding). Both of these showed up just 4 days into taking Accutane but subsided a little by day 7/8. Episodic dry/itchy scalp. No joint/muscle pains outside of the normal hurt I cause myself in the gym.
Initial breakout/recovery Ive read some people have different time frames of starting and stopping new breakouts during Accutane use. Some as last months, some just a week or so and some start very late or very early. Mine started around day 4/5.
Story:
Ive always had some kind of ailment that knocked down my self-esteem or confidence a bit but not so much to be depressed. In elementary school, I had horrible scars on my legs from untreated poison ivy. In middle school, I was the chubby mixed kid. In high school, I thought things would be different but nope. Acne hit 9th grade with vengeance. My face was pretty bad at some points throughout high school and when youre an all year round track runner (Xcountry, indoor/outdoor) wearing limited clothing, the last thing you want is to be dashing through the wind looking like a leopard. Yes, I call myself that. I have a crude since of humor and/or realistic since of reality. I tell my wife I dont like swimming or going to the beach because I dont want to look like a leopard. Looking back at pictures, every major event in high school I had scars on my face from acne except graduation.
Once high school was over for some reason, my face had become 90-95% clear. It slowly transferred all to my body. The only reasoning I can think of is that I began to grow facial hair quicker and therefore began dry shaving every 2-3 days and then used alcohol afterwards. It was this way for much of the next decade. I only had periodic bad breakouts on my face, which coincided with very high stress times. The three that I can think of are a very tough financial situation in undergrad, the time where I couldnt find a job once graduating, and most recently in the second half of 2013 when I was dealing with the stress associated with a newborn (limited sleep, crying). My mother bought procativ in high school among using other OTC items from Neutrogena, Clearasil, clean and clear, etc. I found that using clean and clear with the exfoliating sand (or whatever inside) worked pretty well to keep acne from getting worse than it was over the years.
When I landed a good job, I began to experiment since acne products can get expensive. None really worked and it is time consuming. It was also sporadic. In 2013, it got bad on my face. Nothing slaps you the face harder than bad acne on the face and I finally used my health care plan to go to the dermatologist. I was prescribed an antibiotic (Doxycyline) which seemed to worked. My acne appeared to get a little better but no cure. Once the baby came in May, acne came back on my face. It wasnt horrible but very persistent. It seemed like every time one bump/scar began to diminish another or two would come up. I started getting irritated that I had what looked like Orions belt on my forehead. What was even worse was my body.
I finally went back to the derm in January and got prescribed Accutane after being thoroughly informed of side effects, other prescriptions that could be use etc. I really just wanted it to be over with in one shot and not be taking something for years. I thought January was good because I wouldnt be going through the whole winter (causing more dryness) and I should be clear by summer. So hopefully by then I will be cured and can enjoy doing things in the sun/water with my child as I got to when I was younger.
As for the Zenatane, it has been 12 days since I started. I had originally planned to start earlier but you gotta jump through the hoops first Ipledge agreement, blood test, pharmacy ordering, etc. Even though the booklet and prescription have so many helpful details from test studies to side effects many of you that choose to take Accutane might walk away with one piece of knowledge dont get pregnant. I swear pregnancy as a no-no on Accutane was like every other sentence. Once I was on I stopped other things. I used to take optimum nutrition multivitamins. I switched to a multi vitamin without A & D. Of course I stopped drinking anything although I only have a beer or drink every few weeks/months or so. Ive used several moisturizers Cerave, Alba, Alba cocoa butter style, and Lubriderm advanced therapy. When I switched to Lubriderm my face peeling stopped. I wasnt sure if it was the result of using Lubriderm or just the normal process of Accutane. The same goes for LypSyl; once I started using it along with aquaphor on my lips the extreme dryness slowed and it is not as bad.
Day 1 I felt a strange feeling in my stomach. Not painful, just not normal when I moved. I also had a headache. Im not sure if this was the result of my nervousness/anxiousness of starting a drug that could have ridiculous side effects if you fall into that small percentage of people.
Days 2 & 3 Acne that was there seems to be less puss filled and more hardened. I found out because I have a terrible nervous habit of picking at them
Days 4-7 Dry/peeling face, dry lips, dry scalp. I believe I had an initial breakout here. I suddenly developed 3 medium cystic bumps (2 on forehead, 1 on jawline), some smaller ones on face, and maybe a dozen smaller ones on body (spread around from side of stomach to shoulder to chest).
Days 8-10 Itchy scalp. Possible dry eyes? But I have had issues with dry eyes before so I cant really say it is a side effect of Accutane. I also am becoming very comfortable with the idea of taking Accutane. I think there is a certain paranoia that exists with people like me who are very cautious and it takes a week or two to say ok I am comfortable with this.
Days 10-11 Face & lip dryness virtually non-existent to the outside world. I can feel the dryness but my wife isnt looking at my ears/cheeks (driest parts) like omg. However, if it did continue I think most people would rather be the lizard shedding the skin than dealing with acne any longer.
I hope to report more good results. Just to note, I also drink close to if not a gallon of water a day, so that may have helped. That may be a hard transition for some but I was already drinking of a gallon at least prior to Accutane.
Thanks for reading. Hopefully I can get some pictures up soon. Good luck on your treatment plans no matter what route you take!
Day 12 - Today was the first day I really "went out" on accutane. My wife, the little one, and I went to a car show. My wife pointed out how I looked like someone punched me. The cold seemed to accentuate the effects of dry peeling lips. Earlier in the week I went to the dentist for a cleaning and the work had peeled off a raisin size piece of dry skin off my lip and that area was particularly red. Once we were in the warm house again it seemed to go back to normal. I believe that same cold contributed to what other's might call the "accutane rash." On my left hand I got about a dozen little red raised bumps. Again though, once we were in the warmth and I was able to moisterize more often, the bumps went away although little dark spots are there now. Btw, it was around 20 something degrees. I also was in the beginning stages of a cold.
Day 13 - Cold got worse which meant a lot of nose blowing. Extra nose blowing = a lot of friction on nose which = flaky nose. Lips and rest of face are doing fine but scalp is still dry and hair feels drier.
. I have not posted in a while due to no major changes the next couple of days (after day 13) and being out of town. Now that I am back in town I do have some updates.
Days 14 & 15 - The dry scalp, lips, and face continued (in order of worst to least dry). The hand rash began to look like what some have described as accutane induced excema. The redness went away but the dark spots turned into what seemed like larger scab like/peeling spots.
Days 16-20 These days were pretty much unchanged in the number of side effects; the side effects just increased in intensity. I just had more frequent dry scalp and the flakiness on my face spread to the point where it was everywhere from the back of my ears to the tip of my nose.
Days 21 - 25 were interesting - This is the time I went away. I went from being in cold snowy weather (averaging 20 something degrees by day and sometimes single digits by night) to being in warm weather averaging 70-80 by day and 50-60 by night. This was in San Diego. Officially jealous of those who live in such temperate climates.
The warmth did not seem to help as much as I thought it would but it was only a week. I still had a very flaky scalp, peeling face, and dry eyes. The dry eyes were worse but this may be a side effect of constant outside exposure. When I am outside I assume the wind hitting my face (no matter how light) hastens the process of drying to the point where they turn slightly red. This was especially true when I was running. I ran about 4 miles 2 days in a row and even with a set of Oakley glasses on they still felt drier than if I sat around my apartment. What is also worth noting is the sun exposure. While there, we went to the San Diego Zoo (Tuesday 6 hours), San Diego Safari Park (Wed 5 Hours), Coronado beach & a bayside park (Thur 3 Hours), and Sunset Cliffs/Point Loma Beach & Mission Beach (Friday 4 Hours). On Thursday and Friday before the visits I ran the 4 mile trails. That is a lot of exposure to the sun considering the cautionary flags with sensitivity to sunlight on skin during Accutane. However, I had no sunburn and this was even when I forgot to put any sunscreen on Friday. It may be because of my race, but I am still very fair skin and have been sunburned before. I am sure I was exposed because I had a farmers tan.
I also noticed increased joint pain while there, but this could be very anecdotal, as I cant say it is the direct result of Accutane as there are other important variables. The first variable being that I was lugging around over 100 pounds of luggage on and off shuttles and through multiple airports. I was also carrying around 30 pounds more than usual (baby + carseat) where strollers were not permitted or would not fit. That plus the additional miles of walking through parks and running on trails which I havent done here recently because of the cold probably contributed to the joint pain or stiffness because it didnt hinder my ability to move around.
Days 26-30 The days from the moment we got back from our trip until yesterday have been the most bothersome. Some people have different rankings of side effects that irritate them the most, mines is the Accutane induced eczema. Based on the pictures on the net I assumed that what I had on my hand was eczema and that same type of process has started on to spread to major parts of my body. I was itching and did not think about it until it persisted for a couple of days. On day 28 I noticed what I thought was a scab from acne was actually a dime sized dark indentation on my shoulder. Then I saw other smaller ones on both arms. Within the next 2 days, I began itching and having red spots just like the way the eczema had started on my left hand. It had magically popped up on my right hand, bottom/inside of both forearms, and with a force on my inner/rear thighs. I had my first follow up with the doc on day 29 and confirmed it was eczema. If it gets worse and the creams do not work I will have to be put on a steroid. Two things I dont want to be put on another med as well as having another skin condition but it is what it is.
Once I found the eczema, I changed my regimen. I began to use the cerave cream more often than the Lubriderm as it helped my left hand out. I bought some cetaphil moisturizing cream which is thicker and seems to last longer than the cerave. If I exfoliate with a wet wash cloth and put on the cetaphil cream, my face appears normal for hours without signs of peeling or flaking. Downside is Ive always hated using any moisturizer on parts of my body other than my hands, legs, and feet. Having to use it all over to combat the eczema makes me feel very greasy as the creams are much longer lasting than typical lotions. I also realized that the aquaphor ointment works much better than any other lip moisturizers I have been using. Prior to that, I was using the aquaphor regular lip moisturizer, which does have the benefit of having sun protection in it.
I hope the way I am describing it doesnt sound like a drag too much. I am just being detailed. The initial breakout, dryness, and subsequent eczema isnt horrible at all if the end result is clear skin. Some have described much worse. At this point, the side effects so far are mostly an irritant/inconvenience. One of those cliche motivational posters they typically have around work comes to mind in this situation. There is a picture of mountains with various depths of field (i.e. some close, others in the distance) and it says begin with the end in mind. With Accutane, you just have to keep thinking about the finish line to realize the worth of all the troublesomeness.
Days 26-30 The days from the moment we got back from our trip until yesterday have been the most bothersome. Some people have different rankings of side effects that irritate them the most, mines is the Accutane induced eczema. Based on the pictures on the net I assumed that what I had on my hand was eczema and that same type of process has started on to spread to major parts of my body. I was itching and did not think about it until it persisted for a couple of days. On day 28 I noticed what I thought was a scab from acne was actually a dime sized dark indentation on my shoulder. Then I saw other smaller ones on both arms. Within the next 2 days, I began itching and having red spots just like the way the eczema had started on my left hand. It had magically popped up on my right hand, bottom/inside of both forearms, and with a force on my inner/rear thighs. I had my first follow up with the doc on day 29 and confirmed it was eczema. If it gets worse and the creams do not work I will have to be put on a steroid. Two things I dont want to be put on another med as well as having another skin condition but it is what it is.
Once I found the eczema, I changed my regimen. I began to use the cerave cream more often than the Lubriderm as it helped my left hand out. I bought some cetaphil moisturizing cream which is thicker and seems to last longer than the cerave. If I exfoliate with a wet wash cloth and put on the cetaphil cream, my face appears normal for hours without signs of peeling or flaking. Downside is Ive always hated using any moisturizer on parts of my body other than my hands, legs, and feet. Having to use it all over to combat the eczema makes me feel very greasy as the creams are much longer lasting than typical lotions. I also realized that the aquaphor ointment works much better than any other lip moisturizers I have been using. Prior to that, I was using the aquaphor regular lip moisturizer, which does have the benefit of having sun protection in it.
I hope the way I am describing it doesnt sound like a drag too much. I am just being detailed. The initial breakout, dryness, and subsequent eczema isnt horrible at all if the end result is clear skin. Some have described much worse. At this point, the side effects so far are mostly an irritant/inconvenience. One of those cliche motivational posters they typically have around work comes to mind in this situation. There is a picture of mountains with various depths of field (i.e. some close, others in the distance) and it says begin with the end in mind. With Accutane, you just have to keep thinking about the finish line to realize the worth of all the troublesomeness.
Nooo, that freakin' eczema. Do you have to use really high-potency steroids, or is it pretty mild?
Days 31-35 - Slight hiccup in the process. On Wednesday (day 28 I believe), I had the first follow up appointment. I was prescribed another 30 days BUT just like the start (day 1) I was told by the pharmacy that I would not have anything ready by the same day and that it would be ordered for pickup a day or two later (the standard for ordering any meds where I live). I get another call (after they try to place an order) saying that Zenatane is not available until mid-march. However, Absorbica could be ordered and ready by the next day for a $100 co pay. I have Aetna (HMO Basic) and usually the co pay is usually $10. Apparently, Absorbica is not preffered by Aetna as an fyi for Aetna folks. So I ask if this was consistent across all pharmacies in the area. The tech/pharmacist said that Walgreens and CVS operated in conjunction with different warehouses than Giant (my usual place of pickup), Walmart, Rite Aid, and Safeway I believe. This meant that they might have different generic versions of Accutane available.I ended up filling the prescription at Walgreens for the generic brand Amnesteem. So to those running into the same problem with filling the prescription, make sure you check all the local pharmacies and drug stores because they may operate through different warehouses which in turn can produce different timetables of availability if not a different brand all together. The pills looks the same just a different color.
As far as side effects they remained similar but the ointment seems to penetrate much deeper than the other lip products, so I will continue to use that.
Days 36-39 The week break due to the hiccup in receiving the prescription seems to slow the side effects down. It seemed like the dryness/flakyness subsided a little but this could also be a result of using a better moisturizing product than the Lubriderm that was working at first. What did get worse was my muscle and joint. These scare me the most because I would take mobility with acne any day of the week rather than clear skin and joint stiffness/pain because I am very active. However, after the week passed, the pain lessened. I think I had lower back stiffness/pain as a result of doing heavier than usual squats at the gym which some have recommended not to do (or any very heavy lifting) while on Accutane. It is something to monitor. Running doesnt seem to cause any unwarranted pain unless it is outside the usual (like the 4+ miles a day I ran on vacation because it was warm outside).
In addition, the eczema seems to have gone away although the scars still linger, particularly the large dime size one that was on my right shoulder. I hope that those go away. The eczema may have also slowed as a result of being off Accutane for 4 days. We shall see. Continue the good fight everyone!
Days 40-55 (present Day) - I haven't posted in a while because I haven't had any major changes but I still want to give an update for anyone following. The flaky skin on my face now only appears in the morning and my lips only crack if I go hours without moisterizing but I just do so every hour to avoid the peeling. Someone else said it best moisterize before the dryness appears, not when you start to feel it. I still use a combination of Cream cream, Cetaphil cream, and Aquaphor OINTMENT (not the regular chapstick). These have been wroking great. I have small bumps appear every now and then. My only concern at this point is that my subsided side effects may be the result of taking a week off (when I had the snafu with the pharmacies not having any isoretinin in stock). It seems like it almost restarted the process, so once i get past a month STRAIGHT and then some, I'll be able to see what kind of long term reactions my body has.
Also my hierarchy of irritating side effects has changed. Now the scalp issue is at the top since the eczema has gone away since I switched to creams instead of the lubriderm lotion. What has helped is using some kind of morocan oil conditioner that sits in for a few minutes. They also have morocan oil shampoos but I used a standard dandruff shampoo. After both of I put in either sulphur grease or some kind of other stay oil that my wife showed me. Thanks for reading, hope it helps someone!
Days 55-71 (present Day) - Soooo....I had my second follow with the doctor and the tests were good to go but I essentially went through a similar hiccup as before. A runaround with the prescription at the pharmacy caused me to lose another 3 days. On top of that my brand name changed again. I went from Zenatane the first month, to Amnesteem, and now Clavaris. Might as well take a run at Sotret and Absorbica while I'm at it, lol. If anyone is interested, the pills for Zenatane and Amnesteem look identical except for color. Clavaris is more like a general capsule like you would find in a mineral. And Amnesteem had to be the worse packaging of all three. Really annoying the way they set up the mechanism to open/take the pill out.
Side effects - I was prescribed an oil for my flaky scalp but I find that the general washing and sulphur grease that I used before works fine if done consistently. As a side note, I can't believe the prices health insurance companies get billed for the simplest things. That prescribed oil resulted in a $168 billing. My dry face and lips have been going steady but are completely under control to where the average person wouldn't notice. Sometimes my skin on my face directly adjacent to my nose gets really dry to the point where it feels rough. Aquaphor ointment (that I use on my lips) fixes that quickly. This kind of leads into my new side effect. Runny nose. I think the constant blowing of my nose makes the dryness around my nose that much worse. At first I chalked it up to the cold season but I have had non stop runny nose for over a month now with no related sickness. "Non stop" as in I have to blow it every few hours or so if not active. I find that the more active I am, the more my nose is runny. I am assuming it is because the "juices are flowing" when the human body gets active. When I am at the gym I may have to blow my nose 5-10 times in the span of an hour. I have also started experiencing some joint/muscle/back pain. I am not sure it is the combination of lifting heavy at the gym and not getting as much sleep as I used to but it is some to keep an eye on.
Days 71-99 (present Day) - Its been nearly a month since the last posting. I haven't had much to post. I have had the same side effects which have not gotten better or worse. It seems like the ship has steadied and it will be like this more or less throughout the remaining 2 months. I am a week from beginning my 4th month. Hopefully the pharmacy has the medication on time this time.
Just a couple of notes:
*I have only seen two bumps since my last post. One on my face and one on my shoulder. It seems like the medication is doing the job. With the exception of two scars on my neck, at first glance it looks I have clear skin. But from the head up was never my big problem. It was the body/bacne. The scars from the eczema havne't budged.
*As far as flakiness, the aquaphor "ointment" still does wonders. I regularly use cream in the morning and evening on my whole body and a few times just on my face and hands throughout the day. However, I have learned that the dryness becomes too much for any cream on certain spots every few days or so. These tend to be the spots that endure alot of friction - Calves, thighs, forearms, hands, and the worst is around my nose because I have had non-stop (as in blowing at least a dozen times in any given day) runny nose as a side effect and the tissue rubbing from blowing dries out the area. For my face and hands I use the aquaphor ointment every few days on the places that start to itch. That is my tell tale sign that the dryness is outpacing the cream's ability to moisterize. That is how I got the dreaded red dot patchy eczema on my hands. On my face it prevents the flakes almost entirely. For all the other body parts I just use extra cream and rub it in more than usual.
*The hair issue is still present. I wash every 3-4 days and use sulphur grease. Its prevented flakes for the most part but sill itches.
*Things to keep an eye on - Muscle and joint pain. Not debilitating because I can still run a few miles and/or lift weights as usual without limitation. I have also had these weird movements/feelings in my stomach. Not sure if it is something that changed in my diet, more sporadic ab exercises or the accutane. I just know it doesn't hurt and doesn't seem to mimic the symptoms of Chrohns disease or IBS.
My last day of accutane was Monday July 21st. I stopped keeping track of the days once I had even more delays in obtaining Accutane from the pharmacy. I was actually supposed to be done before July even started.
I didn't have any major updates since my last post outside of the fact that I fixed the hair issue. I actually just started using regular grease (blue magic available at most beauty shops) every 2-3 days. Controlled the flakes and itching. Should have just kept it simple from the beginning.
As far as acne, I have not had any setbacks or new bumps for months but i do have a worries about relapse. I have heard that taking breaks (in my case inadvertently) puts you at higher risk for relapse. Although the doctor said that looking at my case, I don't look like the usual patient (more severe) who would require a 2nd or even 3rd course.
In the mean time I will continue to moisturize, use aquaphor, apply grease, and take supplements without vitamin A for at least the remainder of the summer.
It has been about 3 1/2 weeks off of accutane. So far I have had minor bumps. I can't even call them breakouts. In the first week off I still felt the effects - dryness. I continued on with the usual regimine. By the end of week 2 I had 2-3 small bumps that were very tiny. I have never had these before. I have read some people say it is your body adjusting to having the oil glands working to normal levels again. I haven't researched that but I'll take their word for now. Those tiny bumps have since gone away. Then in the end of week 2 beginning of week 3 I had a regular bump on the back of my neck that I originally thought was a bug bite. It was the first puss filled bump I have had in months. It was very superficial though. So far I can't complain. Nothing that has happened since coming off accutane has been as bad as it was before. Hopefully I will continue to have good news as my oil production gets to the "new" normal levels.
