POSTED UNDER Accutane REVIEWS
Going on Accutane (Twice) Fixed Me But Ruined My Quality of Life
ORIGINAL POST
* READ UNTIL END IF YOU ARE CONSIDERING * Before...
watermaloneMarch 11, 2018
$12,000
* READ UNTIL END IF YOU ARE CONSIDERING *
Before Accutane, I suffered from horrible cystic acne on my chest, back, and T-zone. I do not have any photos of this but it was around 8th and 9th grade. My parents and sister all went through Accutane successfully, so my dermatologist put me on it.
ROUND 1, 2014: The side effects of this medication are horrible as everyone knows. My lips would crack so deeply I couldn't heal them for weeks on end. I would get such dry eyes that almost every night I would get a new cyst if I didn't wake up and douse my eyes in prescription eye drops. This was before I wore contacts and rarely worse glasses, as I couldn't drive yet. I had very bad depression and suicidal thoughts that put me into therapy and almost took me off the medication. After the six months at about $1k a month (I have a deductible so I didn't pay this in full), I was finally done. I immediately became so much happier, found my friends again, got my license, and was living my best life with no acne at all and only some scars on my face.
BETWEEN: My side effects from the first round started to slow down, but they NEVER STOPPED. I continue to have to apply chapstick and eye drops before bed and if I don't I will 100% have cracked, bloody lips and I will get sensitive eyes and sometimes the start of a cyst. My emotional state does not seem to be effected by the medication and I was very happy for a few years. My acne began to come back a bit, and I had a LOT of little red scars (first photos). This is when I decided with the help of my dermatologist to go on Accutane a second time.
ROUND 2, 2016: This time around I was much more prepared for the side effects and as a senior in high school in a stable relationship I believed I would be able to handle it. There were the normal side effects like my lips feeling like they were going to fall off my face constantly (photo set two), and the dry eyes. But because these side effects never went away, I was fine with them. The new side effect that I hadn't remembered was BLINDING migraines. These would keep me out of school and cause me severe vision lost, keeping me from driving as well. I can confidently say that I had never had a migraine before then and I continue to have them to this day. Another NEW side effect I was getting was different joint pain. Problems in my back that I would try to fix but nobody could come to a conclusion on them using x-rays or MRI's. I also began to get shooting pains in my arms and legs, (all of these I still have to this day) and this was diagnosed to be some sort of problem stemming from the spinal nerves. Spinal damage and dehydration of spinal fluid as well as dehydration of joins which are usually well lubricated is a side effect of Accutane that has unfortunately not stopped since I got off two years ago.
POST-ACCUTANE: My daily routine consists of:
• Easily scratched corneas and possible cysts due to overly-dry eyes. No daily contact lens, prescription eye drops, or wearing glasses for multiple weeks has been able to help my eyes. The dryness causes light sensitivity which has almost gotten me into car accidents and is giving me premature wrinkles around my eyes at age twenty.
• Constantly carrying bottles of water and chapstick everywhere I go, having to run to a gas station at midnight because if I go to sleep without it I wake up with bloody, cracked lips.
• Horribly scaly and dry, flaky skin on my whole body. Mostly legs, but I cannot get through the day without moisturizing my face and body at least twice with non-scented extremely dry skin lotion. I have experimented with coconut oil, body oils, and just about everything you can think of. I have it mostly under control with some exfoliation 1-2x weekly and it has helped.
• Constant shooting pains going down my arms and legs, often into my fingertips. Shooting pains in my back and all kinds of joint problems I have had to see doctors about.
• Migraines, which I never had before and regular headaches.
• Horrible circulation, which my sister also suffered from after accutane, sometimes leaving my feet completely white and numb waiting for blood to come to my feet in order to work out normally.
There's a good chance I missed something. But ANYONE WHO IS GOING ON THIS MEDICATION: BE AWARE THAT YOU MAY LIVE THE REST OF YOUR LIFE WITH THESE SIDE EFFECTS. The second time around really solidified a lot of the weird symptoms I was dealing with every day and helped me get closure on my many health problems.
I've attached some photos from the last month when my skin was mostly clear, and then again from just now sitting here typing. I got on a new birth control (went from being on the pill to NuvaRing) and ended up getting hormonal acne AGAIN, and it's very hard to cover with makeup. I am now taking a male hormone blocker twice a day for the acne I'm suffering from.
I wish the best to those of you who are going on Accutane, currently on it, have been on it and are acne free, have been on it and still suffer from acne, and especially those of you suffering these lifelong horrible symptoms. You are not alone.
I am very grateful to no longer be in the daily emotional and physical pain of being covered in acne.
Before Accutane, I suffered from horrible cystic acne on my chest, back, and T-zone. I do not have any photos of this but it was around 8th and 9th grade. My parents and sister all went through Accutane successfully, so my dermatologist put me on it.
ROUND 1, 2014: The side effects of this medication are horrible as everyone knows. My lips would crack so deeply I couldn't heal them for weeks on end. I would get such dry eyes that almost every night I would get a new cyst if I didn't wake up and douse my eyes in prescription eye drops. This was before I wore contacts and rarely worse glasses, as I couldn't drive yet. I had very bad depression and suicidal thoughts that put me into therapy and almost took me off the medication. After the six months at about $1k a month (I have a deductible so I didn't pay this in full), I was finally done. I immediately became so much happier, found my friends again, got my license, and was living my best life with no acne at all and only some scars on my face.
BETWEEN: My side effects from the first round started to slow down, but they NEVER STOPPED. I continue to have to apply chapstick and eye drops before bed and if I don't I will 100% have cracked, bloody lips and I will get sensitive eyes and sometimes the start of a cyst. My emotional state does not seem to be effected by the medication and I was very happy for a few years. My acne began to come back a bit, and I had a LOT of little red scars (first photos). This is when I decided with the help of my dermatologist to go on Accutane a second time.
ROUND 2, 2016: This time around I was much more prepared for the side effects and as a senior in high school in a stable relationship I believed I would be able to handle it. There were the normal side effects like my lips feeling like they were going to fall off my face constantly (photo set two), and the dry eyes. But because these side effects never went away, I was fine with them. The new side effect that I hadn't remembered was BLINDING migraines. These would keep me out of school and cause me severe vision lost, keeping me from driving as well. I can confidently say that I had never had a migraine before then and I continue to have them to this day. Another NEW side effect I was getting was different joint pain. Problems in my back that I would try to fix but nobody could come to a conclusion on them using x-rays or MRI's. I also began to get shooting pains in my arms and legs, (all of these I still have to this day) and this was diagnosed to be some sort of problem stemming from the spinal nerves. Spinal damage and dehydration of spinal fluid as well as dehydration of joins which are usually well lubricated is a side effect of Accutane that has unfortunately not stopped since I got off two years ago.
POST-ACCUTANE: My daily routine consists of:
• Easily scratched corneas and possible cysts due to overly-dry eyes. No daily contact lens, prescription eye drops, or wearing glasses for multiple weeks has been able to help my eyes. The dryness causes light sensitivity which has almost gotten me into car accidents and is giving me premature wrinkles around my eyes at age twenty.
• Constantly carrying bottles of water and chapstick everywhere I go, having to run to a gas station at midnight because if I go to sleep without it I wake up with bloody, cracked lips.
• Horribly scaly and dry, flaky skin on my whole body. Mostly legs, but I cannot get through the day without moisturizing my face and body at least twice with non-scented extremely dry skin lotion. I have experimented with coconut oil, body oils, and just about everything you can think of. I have it mostly under control with some exfoliation 1-2x weekly and it has helped.
• Constant shooting pains going down my arms and legs, often into my fingertips. Shooting pains in my back and all kinds of joint problems I have had to see doctors about.
• Migraines, which I never had before and regular headaches.
• Horrible circulation, which my sister also suffered from after accutane, sometimes leaving my feet completely white and numb waiting for blood to come to my feet in order to work out normally.
There's a good chance I missed something. But ANYONE WHO IS GOING ON THIS MEDICATION: BE AWARE THAT YOU MAY LIVE THE REST OF YOUR LIFE WITH THESE SIDE EFFECTS. The second time around really solidified a lot of the weird symptoms I was dealing with every day and helped me get closure on my many health problems.
I've attached some photos from the last month when my skin was mostly clear, and then again from just now sitting here typing. I got on a new birth control (went from being on the pill to NuvaRing) and ended up getting hormonal acne AGAIN, and it's very hard to cover with makeup. I am now taking a male hormone blocker twice a day for the acne I'm suffering from.
I wish the best to those of you who are going on Accutane, currently on it, have been on it and are acne free, have been on it and still suffer from acne, and especially those of you suffering these lifelong horrible symptoms. You are not alone.
I am very grateful to no longer be in the daily emotional and physical pain of being covered in acne.
Replies (15)
March 13, 2018
Comment and suggestion for you. First, my daughter went on Accutane twice at a young age about 12 or 13 and then 14. During the first round she became suicidal and developed a short lived eating disorder. It was not a long course or high dose. All of this was very scary and happened after about 3 weeks on treatment. The dermatologists were very reticent to believe that there was a relationship. Acne is verrrrryyy hard, as all of you reading are acutely aware, and so I let her do another short course a few years after. Within a very short time of starting her mood plummeted severely and suddenly and we stopped. Here is the thing, our brains need lipids, as do our nerves and nervous system. When we desiccate the tissues and deprive them of the lipids they need to function, we get a panoply of problems. Most of us can tolerate some temporary dry skin and lips, but what we don't realize is that our joints, nerves and brain tissue may be affected as well...and maybe the effects are not so temporary.
Here is what I wish that I had done and known. I wish I would have taken moderately high doses of both fish oil and evening primrose oil every day before and during the treatment with accutane. And for the original poster, I believe your experience 100% and I am certain that you can heal and remedy your body. I truly would suggest taking moderately high doses of Evening Primrose Oil daily and quality EPA/DHA fish oil. As an aside, Ive had chapped lips my entire life (no accutane) and finally have normal lips since taking EPO 3 tabs daily. They return if I stop the EPO for about 3 days.
Here is what I wish that I had done and known. I wish I would have taken moderately high doses of both fish oil and evening primrose oil every day before and during the treatment with accutane. And for the original poster, I believe your experience 100% and I am certain that you can heal and remedy your body. I truly would suggest taking moderately high doses of Evening Primrose Oil daily and quality EPA/DHA fish oil. As an aside, Ive had chapped lips my entire life (no accutane) and finally have normal lips since taking EPO 3 tabs daily. They return if I stop the EPO for about 3 days.
March 13, 2018
This is amazing advice. I'm so sorry your daughter had to go through that, and I'm so glad that her mental state did not cause her to do something harmful to herself. I hope more people can learn from your comment! Lipids are so important! I will make sure to leave a comment letting you know how it goes. :)
March 14, 2018
All of that sounds horrible!! I'm so sorry you're going through all of that!
I've been taking Accutane for 13 months now. I'm 30 yrs old, 130 lbs, and have been battling acne since I was 12 yrs old. I started at the lowest dose (20 mg), then my dermatologist bumped me up to 40 mg. After 2 months of being on 40 mg/day, I started getting the really bad migraines and joint pain. She wasn't too concerned about the joint pain, but was very worried about the severe migraines even though I've had migraines my whole life. Apparently Accutane can cause swelling of the optical nerve and could potentially cause partial or total permanent blindness, so that's why she got so nervous. I stopped taking Accutane for a month and the migraines went away! We tried going back on the 40 mg/day dosage a few times, but the migraines kept coming back, not as severe but were still there. I've been riding at 20 mg/day for a while now and I've been doing pretty good!
I've been so lucky because I haven't had nearly any of the extreme symptoms other's seem to describe - just semi-chapped lips as long as I wear good lip cream at night and keep up with Bert's Bee's chapstick, semi-dry skin, and I only have to wash my hair every 4 days! My dermatologist said she'd done a lot of research about being on a small dose for longer, and there's actually a lot out there that shows it still has the same effect without all the other horrible side effects. It's a semi-common practice in Europe. I mean, it sucks to be on Accutane and do the monthly visits for the past year, but if it means clear skin after battling acne for 15 years... I can deal with it! After this month, I'll finally be within my goal dosage range and I'm so excited! I haven't had a breakout in months... I just hope I come out of all this still acne free!
March 30, 2018
if i could go back in time, i would do exactly what you did. I’m so glad you’re handling it well!
March 14, 2018
I'm sorry this has happened to you but I can't comprehend why yourself nor your physician didn't think to stop your course if you were having severe side effects to the medication. People have debilitating reactions to any kind of medication, that's why it is very important to monitor a person who is on new medication. If anything, you should be warning people about your doctor, as it seems like they might have failed in their duty of care towards you. I hope these side effects eventually settle for you and your quality of life improves in future.
March 30, 2018
i just feel a little bad because he’s my family’s dermatologist whom I’ve known for my whole life and he put my sister through accutane she’s fine. so i hate to blame it on hm :/
March 30, 2018
I am so sorry that you've had to deal with all of this. The only thing I can think to maybe help you out in some small way is recommending the lip balm that has saved my life on accutane: DHC Lip Cream. It's available on amazon, and is truly my lip's savior.
March 30, 2018
thank you so much! I’m always taking requests for new chapsticks, lotions, and other skin products as I have very flakey dry skin all over my body. thank you thank you! :)
UPDATED FROM watermalone
Week 4 of Spironolactone & Retin-A
watermaloneMarch 23, 2018
Here’s me at week four of using spironolactone orally twice daily (25 mg) and a .08% strength Retin-A mixed with my face lotion every other night.
Replies (0)
UPDATED FROM watermalone
Spironolactone is WORKING!
watermaloneMarch 30, 2018
I’m so happy to say I’ve been acne free since my last pot because of this spironolactone.
I highly recommend it for non-cystic acne paired with a topical treatment such as Retin-A or Ziana mixed in with your lotion for scarring.
Here’s how I’m looking at the moment!
I highly recommend it for non-cystic acne paired with a topical treatment such as Retin-A or Ziana mixed in with your lotion for scarring.
Here’s how I’m looking at the moment!
Replies (4)
April 6, 2018
Spironolactone caused me side effects. One of breast started to collect all fluid there and just become so swollen. I called my Dermotologist and he said to stop. 3/4 weeks later it become normal, I never took it again. Could be because I have implants.
But then I read dangerous things about it, that it can cause cancer too. And not recommended to stay too long on it.
April 6, 2018
I’ve also heard not to stay on it for too long. I have silicone implants under the muscle (1.5 weeks old, you can see review on my profile) and I will definitely keep a good watch over them. Thank you so much for letting me know!
April 7, 2018
You are very welcome!
I got really worried and panicking what is going on with my body. To have red, inflamed, swollen breast and very painful. I thought something with implants. I checked it was all good.
It really scared me.
You are very very new with breast implants. They look beautiful, very natural.
I got really worried and panicking what is going on with my body. To have red, inflamed, swollen breast and very painful. I thought something with implants. I checked it was all good.
It really scared me.
You are very very new with breast implants. They look beautiful, very natural.
I do take spironolactone twice daily, which (if you've heard of it I'm sorry for over explaining) is basically a blood pressure medication that actively blocks male hormones. Ever since being on my newest birth control, I've had small pimples around my mouth and it's been clearing up with the new meds.
I do wish I had done more research, as I've talked to people who are living with Accutane symptoms 20 years later. However, having a difficult body to deal with has definitely kept me self aware of my health. :) I hope your problems were solved as well!