Repairing the long-term damage from Accutane

9,408 posts in this topic

Do any of you personally know, or have read about peoples side effects that cleared by themselves in time?

I've searched google but havent found any success stories which is really disheartening.

It's been over 2 years since i took accutane and my joints are killing me and my hair, face and body and are extremely dry (I could list a whole page of other side effects i've had but i'm not in the mood to do so).

I already take glucosamine, chondroitin, msm, hyaluronic acid and drink lots of water, all which seem to have abosolutely no effect.

Things that helped me:

Joint pain:

- Vitamin D

- Hyaluronic acid

Energy, coldness (thyroid):

- Kelp supplements (for iodine)

- Selenium

Digestion, gut health:

- NOW Supper Enzymes

- Probiotics

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Do any of you personally know, or have read about peoples side effects that cleared by themselves in time?

I've searched google but havent found any success stories which is really disheartening.

It's been over 2 years since i took accutane and my joints are killing me and my hair, face and body and are extremely dry (I could list a whole page of other side effects i've had but i'm not in the mood to do so).

I already take glucosamine, chondroitin, msm, hyaluronic acid and drink lots of water, all which seem to have abosolutely no effect.

Im the same 2 years post exactly.

Things that have only gotten worse over time - hair and skin has become increasingly drier & brittle over time/the hairloss is worse - no regrowth and it just keeps coming out non stop. handful upon handful every day.

My skin is no longer pale - it has turned a yellow/brown colour and my face is a different colour from my body - I never go in the sun.

Supplements & diet have not helped. Nothing has helped.

I've given up and accepted that my life will never be what it once was.

I fear my body may never heal.

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My reason for taking accutane was oily skin and a shit loads of sebum in all of my pores. I had lived with it since i was 11/12 and tried everything else. After reading posts on bodybuilding forums saying how good accutane was and how it had changed their lives, I decided to give it a go. (I didn't read any posts about long term side effects just posts that mostly mentioned chapped lips and joint pain while on the drug, which cleared after completing their course.)

Little background info:

I'm 25 years old and took took two courses of accutane with the last one finishing May 1st 2010, so almost 2 years ago.

I never drank or smoked while on accutane and always had at least 8 glasses of water a day.

Here are the side effects I have because of accutane:

Back problems with nerve pain going down to the top of my ass.

Neck crunches when moving my head in different directions and nerve pain down the left side of my neck.

Elbow pain in both elbows.

Left knee popped a few days ago (non exercise related) and my leg just give way.

Extreme tightness in all of my muscles (especially my chest) which ache and burn for days after working out and never seem to fully recover.

I noticed not long after starting accutane how tired and heavy my muscles felt and how easily out of breath I became while running, I also noticed I couldn't run the distances that I previously could with ease. (no change as of today) .

Stomach noises and an uncomfortable feeling in my stomach. (this occurred roughly 8 months after finishing accutane and still happens frequently)

Heartburn everyday for the past 4/5 months.

Diarrehoea, if I eat foods with too much sugar or gluten. (Never had this problem before accutane.)

Extreme sweating. (I will sweat buckets just walking, even when it's freezing cold.)

Hair has receded at my temples and thinned all over.

Lots of white hairs started popping up towards the end of my second course and I have even more now.

Crazy amount of split ends with very strange shapes to them, I've tweezed out a shit load of hairs that are not straight or curly but are like zig zag shaped.

Hairs growing in areas where I never had any before. (Above my eyebrows, upper arms, upper back, just below my hairline and on top of my ears.)

Dark circles under my eyes where the skin has thinned and I can see veins as well.

Wrinkles underneath my eyes. ( I can see wrinkles in different parts of my face which I never had pre accutane).

Skin marks and cuts really easily since accutane.

Skin is always dry and oily no matter how much water I drink or omega 3 enriched fish I eat.

Can't handle the sun anymore because the brightness kills my eyes and the sun makes me burn and freckle easily, whilst before I never freckled from being out in the sun.

I also noticed moles appearing on accutane.

Gums have receded and some of my teeth are now see through because the enamel has gone.

I've had 2 blood tests in the past 6 months with no abnormal results.

That decision i made to take Accutane still haunts me to this day. I often fantasize about travelling back in time to stop myself going anywhere near Accutane.

Most days i feel extremely depressed and suicidal, the only reason that has stopped me from ending my life is my family because i know how much it would hurt them.

I finished watching Six Feet Under the other day and after the finale i just lost it. For some reason It made me think about my family finding out i had killed myself and them crying at my funeral.

I really feel for everyone of you on here and have had tears in my eyes reading your posts, it kills me to think that nothing can be done to heal us to what we were like pre accutane.

If ever anything helps me out in any way you'll be the first to know.

Holy shit our side effects are almost identical.

I too have the bizarre white hair growth covering every square inch of my body - forhead,all over cheeks,back,upper arms, etc

This started at the same time my skin became inexplicably dry and tight. My hair became more brittle & dry and fell out more.

I too have wrinkles - dehydration lines covering my upper cheeks, forhead etc

Has your face darkened?

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No my face has actually got more pale, but it does get red easily which it never did before. I'd say the only part of my face which has gone darker is underneath my eyes.

Have you got wrinkles on your hands and feet aswell? I've noticed wrinkles not only on my face but on my palms, tops of my fingers (where they bend) and on the sides of my feet.

Another thing i've noiced, no matter how much water i drink my urine is never fully clear like it was before accutane.

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No my face has actually got more pale, but it does get red easily which it never did before. I'd say the only part of my face which has gone darker is underneath my eyes.

Have you got wrinkles on your hands and feet aswell? I've noticed wrinkles not only on my face but on my palms, tops of my fingers (where they bend) and on the sides of my feet.

Another thing i've noiced, no matter how much water i drink my urine is never fully clear like it was before accutane.

Yes I have. I have painful wrists and Ive noticed deep lines that have formed almost halfway up my hands, the skin has thinned on my hands so veins and tendons are obvious and the skin has many more wrinkles than I did even 6 months ago.

The lines all over my face from the dryness/tightness

I suspect my face has darkened due to the dehydration in my skin.

I drink about 2 L's per day and it seems to flush through ok, but its as if it filetrs straight through without absorbing anything into my body - I drink and very soon after need to go.

Im eating alot of fresh fruit each day as well as an avocado with my brown rice sushi for lunch in an attempt to nourish my skin & hair, haven't noticed anything.

How's your current condition with skin & hair?

Any progress?

And what was your dosage & tx length?

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No my face has actually got more pale, but it does get red easily which it never did before. I'd say the only part of my face which has gone darker is underneath my eyes.

Have you got wrinkles on your hands and feet aswell? I've noticed wrinkles not only on my face but on my palms, tops of my fingers (where they bend) and on the sides of my feet.

Another thing i've noiced, no matter how much water i drink my urine is never fully clear like it was before accutane.

Yes I have. I have painful wrists and Ive noticed deep lines that have formed almost halfway up my hands, the skin has thinned on my hands so veins and tendons are obvious and the skin has many more wrinkles than I did even 6 months ago.

The lines all over my face from the dryness/tightness

I suspect my face has darkened due to the dehydration in my skin.

I drink about 2 L's per day and it seems to flush through ok, but its as if it filetrs straight through without absorbing anything into my body - I drink and very soon after need to go.

Im eating alot of fresh fruit each day as well as an avocado with my brown rice sushi for lunch in an attempt to nourish my skin & hair, haven't noticed anything.

How's your current condition with skin & hair?

Any progress?

And what was your dosage & tx length?

I Bought my accutane from the internet and self medicated for 2 courses. I took 80mg per day most of the time but i remember taking 100mg per day towards the end of my first course. Both courses were 3-4 months.

I had read lots of posts about people saying how important the cumulative dosage was so i've taken quite a bit of accutane. I weighed around 215lbs at the time i took it.

I eat mostly healthy food and have done even before accutane. Some of the foods i eat are steak, chicken, lamb, fish, (wild salmon, tuna, Cod, sardines) blueberries, fresh pineapple, brown rice, oats, broccoli, cinnamon, honey.

Never have dairy and rarely have foods that contain gluten.

Do you workout at all?

These days I'm realy struggling to exercise like i used to as my joints are too painful.

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shit really?

I was on it 12 months, prescribed by the derm. Cumulative dosage was around 14,400 mg's. 40mg one day, 60 the next. clearly given too much for too long.

Im a slim 53kg's.

Im the same with my diet, more good than bad - I believe diet is the only thing that is going to heal our bodies - that and the fact every tissue renews in 7 years, so Im wishing upon a start that within 7 years this will all be over..

I too have really hollow eyes now, the skin has thinned and sagged. Ive lost the supporting tissue from under my eyes. I have black rings particularly my lids & inner eyes. Very hard to cover.

The dryness is actually worse around my eyes ( as well as my upper cheeks)

I have been depressed over a year and have not exercised. I used to do alot of walking

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I really hope the documentary (Dying for clear skin) airing tonight in the UK on BBC3 will show interviews with people who have had all sorts of side effects from accutane and not just focus on the depression people can get from it.

I don't know whether the filmakers son Jesse had any other side effects apart from depression, but if he didn't then the makers of accutane (Roche) will just say his depession (which lead to him taking his own life) was due to his acne and had nothing to do with accutane.

It would be great if Jesse's family and everyone else who has been affected by accutane can get a positive result from this documentary airing.

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I really hope the documentary (Dying for clear skin) airing tonight in the UK on BBC3 will show interviews with people who have had all sorts of side effects from accutane and not just focus on the depression people can get from it.

I don't know whether the filmakers son Jesse had any other side effects apart from depression, but if he didn't then the makers of accutane (Roche) will just say his depession (which lead to him taking his own life) was due to his acne and had nothing to do with accutane.

It would be great if Jesse's family and everyone else who has been affected by accutane can get a positive result from this documentary airing.

Can anyone record it and put it up on Youtube?

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Turns out it was cholacol that was doing the heavy lifting, not now super enzymes. cholacol has 14x more bile in it per recommended dose, so it's not surprising. Guess the enteric coating didn't matter so much.


Accutane - Brief low-dose course ~9 years ago for ~4 months. Liver monitored, no sides.
Symptoms: Gradual onset of symptoms, peaking ~5 years ago. Extreme IBS, lost ability to eat almost everything, unable to work for 4 years. IBD diagnosis might've been possible, but avoided doctors and the prescription meds route, going for diet and supplements instead. Thought it was regular IBS, didn't realize it was Accutane until already had avoided the IBD diagnosis. Decided going back to hell just to get the diagnosis wasn't worth it. Regained enough health to work full time around May-June 2013.
Regimen summary:
Eat only
1. true free range lean chicken breast (expensive)
2. Lean white-tail shrimp (moderately expensive)
3. Glutinous rice gruel (very cheap)
All ad libitum, minimum 150g shrimp/d.
Supplements:
1. Blue Ice CLO / Butter Oil blend
2. Udca ~1-3g /d
3. Source Naturals Essential enzymes 2x per meal
4. Symbiotics Colostrum ~1/8 scoop per meal
5. Cycled topical testosterone cream
6. Topical ACV, tea tree oil (morning) and benzoyle peroxide 10% (night)
Zeitgeibers:
1. Aim to nap every 3 hours for 20 minutes
2. Match light exposure to sunrise, sunset
3. Match meals to sun


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I really hope the documentary (Dying for clear skin) airing tonight in the UK on BBC3 will show interviews with people who have had all sorts of side effects from accutane and not just focus on the depression people can get from it.

I don't know whether the filmakers son Jesse had any other side effects apart from depression, but if he didn't then the makers of accutane (Roche) will just say his depession (which lead to him taking his own life) was due to his acne and had nothing to do with accutane.

It would be great if Jesse's family and everyone else who has been affected by accutane can get a positive result from this documentary airing.

He had sexual dysfunction.

I'm pretty sure that is mentioned in it, but i've not seen it yet.

Just watched my friend Will, who is pretty much the star of the show, on BBC Breakfast.

They showed an advert and it looks really good.

They've done some good promoting for it so I hope it gets a lot of attention.

I'm on there talking about side effects though, and hopefully I'm not the only one

Stef

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Hi - the consultant, Neill Hepburn, who was featured on today's BBC introduction to the documentary 'Dying for Clear Skin' was my dermatologist at Lincoln Spire. I had two rounds, the first being only successful for one year. Admittedly after looking into Roaccutane more, I do feel that the prolonged side effects were not emphasised as much as they could have been. And, like you Stef, being only young (I was 16/17 for the first round) I didn't have any reason not to believe my derm, especially as we went privately!

I will be watching tonight - I think it will be very informative. I have a friend who is currently looking into using Roaccutane, although I feel she may fall under the category of those being offered isotretinoin for a milder case of acne. I do hope we can help to inform more people about the side effects of the drug.

Incidentally, I am looking into homeopathic help for long term side effects, such as onset of Seasonal Affective Disorder (SAD), anxiety, low libido, and dry eyes. Without going all through this very long and very informative thread, would you highlight anything in particular which has made the greatest improvement for you? I too am committed to fixing what this drug has done!

Thanks,

Vanessa

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Indigo - I also saw Breakfast this morning, and it looked really good from what they were talking about (with Jesse's dad) and the clip they showed (I saw you!). I am really looking forward to this tonight. I have so much respect for Jesse's dad for doing this... what a man!! The dermatologist that spoke may as well of not featured at all with the generic stuff he said... very scripted... If this documentary doesn't raise awareness or get the ignorant to see this drug for what it really is, then there's no hope..

Edited by jmsil
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stefen wel done really proud of u on that program i just watched. I hated how roche just say "nocasual link". i hope you get better you have all my respect. only reason i watched it was to see u lol

on another note i have been taking tablets for my anemia and things have got better. my erection i say are about 90% better and only started taking tablets 3 days ago. I still dont know if it was accutane that caused this problems.

Edited by Suffering12345
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Brilliant documentary! Well done Stefan...you're absolutely right, more needs to be said about the lasting effects of accutane. This should be essential viewing for potential accuse users.

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Well I just watched the documentary and will probably again on BBC iPlayer tomorrow if it is available. Sorry but I have to say I didn't really think it was a great documentary.... I don't know what I was expecting really but it kinda seemed a bit lightweight and short on "scientific" discussion - it was kinda like the idiots guide to acne and the research side of it seemed like they had just pulled some videos off youtube and strung them together to make a story.

However, it was obviously very sad and hard to watch the interviews - seeing what a huge impact the two guys suicide had on the families.

The second guy (medical student) never should have been given Accutane by the sounds of it, as he only had a 'few' spots on his back; I couldn't help but wonder if he maybe got prescribed something he shouldn't have done because he was medical student and had 'contacts' within the medical setting.

I don't know what therapy the teenage guy was having, but it seemed to work really well and I wonder if there is any cost effective way for the NHS to offer that before Accutane is considered. £120? per session is a lot but as they went private I imagine a lot of that price could be driven down in the NHS.

I think it comes down to the point I was trying to make in previous posts - For most people Accutane is basically a last resort that works well with only mild/short term side effects, however, that doesn't help those small % of people who end up with severe / long term problems.

Also I thought it was a bit disappointing that Roche wouldn't go on camera and the two doctors (GP & consultant) who were interviewed seemed like they were reading from a script really.


Took Roaccutane for moderate but persistent adult back & body acne.

04/2013. Completed course after 32 weeks, cumulative dosage of approx 100mg per kg.

02/2014. Completed second lower dose course.

04/2014. Acne is already returning.....


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Just finished watching the documentary and I was diassapointed to be honest.

Only two side effects were covered with some depth (depression and sexual dysfunction) when in reality there are a whole list of long term side effects that can be caused by accutane.

It didn't look great when that girl said how much she loves roaccutane and how great it had worked for her, she also mentioned that even though it had worked amazingly well, she still had "serious" side effects like dry skin, chapped lips and nosebleeds when in reality they are some of the most tame side effects you can get.

When the UK's leading dermatologist (Dr Chu i think it was ) said something along the lines of "out of the 1000 cases that i have treated people with Roaccutane, none of them have had serious side effects". Now that is either total bullshit or the ones that did have sides effects had most probably completed their course and didn't bother returning to see him.

It was heartbraking listening to Derek and the father of the man who was training to be a doctor, talk about their sons conditions and eventual suicides.

I think the father of Jesse (Derek) genuinely believes Roaccutane was the cause of Jesse's mood change and depression (he has a good reason to do so) but what didnt help matters was when it showed his friends mentioning how shit he felt because of his acne, which kind of deflected the focus off accutane and back on to his acne being the cause of his death.

Steph, i thought you came across really well and it was a big shame that they didn't mention your other side effects, it seems like they just wanted to focus on the link between depression and accutane.

I thought it was a big opportunity missed not to mention the successful crohns and IBS lawsuits in the USA into educating people how dangerous a drug like accutane really is.

On the whole i thought it was a good documentary but could have been much better if they had discussed more of the dangers/risks that can be caused by taking Roaccutane and had talked to more people who have suffered a variety of long term side effects.

Edited by Luis Figo

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I thought the documentary was very good. I am just grateful that some of the drug's dangers, for the bulk of the hour, were on TV for people to see. That was the main thing. Some of the good things to come out of the documentary were the mention of side effects being permanent and life long, and the absolute doom and gloom mentality that was mentioned in the interview with Stefan. Not everyone knows this, or understand how people feel who suffer from the drug. Like others have said Stefan, you came across very well and did a good job! The scenes with Jesse's family were very emotional, especially the ending.

Edited by jmsil
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I thought the documentary was very good. I am just grateful that some of the drug's dangers, for the bulk of the hour, were on TV for people to see. That was the main thing. Some of the good things to come out of the documentary were the mention of side effects being permanent and life long, and the absolute doom and gloom mentality that was mentioned in the interview with Stefan. Not everyone knows this, or understand how people feel who suffer from the drug. Like others have said Stefan, you came across very well and did a good job! The scenes with Jesse's family were very emotional, especially the ending.

Edited by jmsil

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I thought the documentary was very good. I am just grateful that some of the drug's dangers, for the bulk of the hour, were on TV for people to see. That was the main thing. Some of the good things to come out of the documentary were the mention of side effects being permanent and life long, and the absolute doom and gloom mentality that was mentioned in the interview with Stefan. Not everyone knows this, or understand how people feel who suffer from the drug. Like others have said Stefan, you came across very well and did a good job! The scenes with Jesse's family were very emotional, especially the ending.

Thanks James.

I'm glad you liked it.

I agree it was very emotional and hard-hitting.

People will certainly think twice about allowing their kids (or themselves) to swallow this shit.

It will make a difference.

History has been changed a little because of this.

I hope this isn't the end of our story, because we all need some help x

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Standard Process is awesome! Been taking oculotrophin for 4 days now. Floaters are off and on, perhaps a bit better because they were previously constant. But the main thing noticed is that the dry sensation has been hugely reduced since I started... like basically nonexistent. I am a believer in SP's "like heals like" philosophy... Think it'd be cool if more people here tried their products... they have great details about them on their website. You can even search products by ingredient.

Still getting along well with a drop of peppermint oil in my water when i have a tummy flare up. Flare ups are in control.

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Do any of you personally know, or have read about peoples side effects that cleared by themselves in time?

I've searched google but havent found any success stories which is really disheartening.

It's been over 2 years since i took accutane and my joints are killing me and my hair, face and body and are extremely dry (I could list a whole page of other side effects i've had but i'm not in the mood to do so).

I already take glucosamine, chondroitin, msm, hyaluronic acid and drink lots of water, all which seem to have abosolutely no effect.

The internet is littered with stories of people suffering from all types of illnesses and disorders and what they do to cope. Many times I read these stories and wonder if they maybe took Accutane in their youth. People may be suffering greatly and not even attribute their illness as being a side effect of accutane.

For example, I recently stumbled across this guy's blog (this is from 2007) who dveloped an "incurable" autoimmune disease called Primary Sclerosing Cholangitis and he blogs about how he was able to reverse his state of degeneration. It's interesting to note he mentions taking accutane at one point in his life and you have to wonder if that could be a primary cause of his autoimmune disease. Who knows!

Short summary of what he did:

-Whole natural diet (low sugar vegan)

-Juice feasting

-Chlorella

-MSM

-Chanca piedra tea

-Coffee enemas

-Yoga

-Skin brushing

-Drinking more water

-Deep breathing

http://wild-health.blogspot.com/2007/10/detox-symptoms-and-more-colon-stuff.html

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Great documentary! I plan to show it to my mother soon as she believe the doctors have all the answers and said I was being silly when I was against going for more rounds of antibiotics, its not that simple. (Ro)accutane is not something I am going to look into unless I had thrown everything and the kitchen sink at clearing my skin - and that will take an incredibly long time, who knows by then it might have cleared up on its own anyway...


If you have nothing to be grateful for; check your pulse.


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