3023 replies to this topic

[IndigoRush]

Hello.

First of all, don't get too excited if you're in a similar situation to me and were hoping this post would hold the fix for long-term (Ro)accutane damage. I just wanted to express my situation and see if anyone can help.

I'm bored of reading depressing no-way-out answers and I refuse to give up and stop trying to fix myself. I'm also not inviting those who say the side effects aren't caused by this drug - I am 100% sure, and have read enough posts from others to know that Accutane isn't simply 'out' of your system after a month. I've read several theories into why things like IBS, Erectile Dysfunction and knee problems can occur months or years after stopping treatment. I'm talking about the liver storing the high-levels of Vitamin A, Accutane staying in the colon, and even something - which if it's true means only bad news - to do with DNA change and 'Telomere' shortening, which means a slow but sure decrease in health(This has been written by Nathan Carr, who you may of heard of).
But I'm not writing to find out which of these theories, if any, is true. I want to see if anyone can actually give good advice on supplements/diet, or whatever else, to repair damage from this poison.
Below, I will list the details of when I took this drug and what side effects I have + how I cope with life. One last thing - Anyone saying that these side effects are rare, i.e 1%, forget it. 1% reported. Since taking this drug, my life has been limited and difficult. I'm not in that 1% statistic because I haven't reported it directly to the manufacturer. I expect the figure is a lot higher.

As I said, side effects can come on AFTER taking this, so people could be ignorant to the cause. However, I know better, and after watching my health drop dramatically while/after taking Accutane, I can firmly say it's the cause. Let's begin ...

Basics: I'm 21 at the end of this month. It's now 5 years since I touched Ro-accutane (Ro-accutane is just the British name for it). I took it from December 2005 - May 2006. I was meant to finish in June, but stopped due to feeling very depressed/suicidal (because of the drug). My problems are below...

- Dry Eyes (Severe)
- E.D/ Low Libido (Started last year and has gone on consistently since)
- Hair-loss (Including eyebrows, facial hair 'gaps' and body hair)
- Slow Healing (Shaving is a pain now - No, it's not my technique)
- Lack of sebum (oil)
- Brain Fog/ Memory problems - Somewhat minor
- Anxiety (mainly because of the other side effects - i.e. dry eyes causing me to feel embarassed about eye contact)
- Excessive hair (Not related to head, but my beard grows high up on cheeks and even on the outside of my nose)
- I believe I look older than I should due to lack of oil
- Joint/Muscle problems - Aches/ Slow recovery
- Excessive sweating.. Terrible if I go running at the gym, for example.
- Dry mouth
- Nosebleeds more than I should
- Fatigue
- Overall depression and confusion (*Rhetorical question* Is this a direct symptom or am I like it because of all the other side-effects stressing me out?)

That's what I can think of for now. Of course, I wasn't told about half of these being a possibly problem and I was told any side-effects will be temporary. I was 15, so I had no reason not to trust the Doc's word.

I've tried lots of different supplements (a lot of which I still take just incase they are helping/slowing down the problems) including Omega 3, Biotin, B-Complex, Vitamin E, Vitamin D, Vitamin C, Collagen, Hyaluronic acid, Aloe Vera Juice, MSM, Colostrum, Garlic, Acetyl L-Carnitine, Acetyl L-Cysteine, Milk Thistle, Dandelion Root, Quercetin, Tumeric.

So, yeah, I've tried a lot of things. The Milk Thistle and Dandelion Root are recent additions because despite having my liver test results come back as positive, I've heard your liver can still not be functioning correctly and people are given liver tests monthly while taking this drug for a reason, right? I'm starting to eat better foods as this sh*t taught me that Natural is the way to go. I still binge on cakes and that occasionally - Mainly for comfort. I'm average weight and height, but want to cut out processed foods to support my body.

I don't want to make this EXTREMELY long, so I'll cut it short. I'm currently seeing a Homeopathy about these problems. And Yes, I know "Science says it's boll*cks", and I don't understand how it's supposed to work, but sometimes you have to think outside the box and give things a go. I don't have high hopes for things getting better these days, but I'm not giving up. There is so much more I could say, but let me know your thoughts. I don't want to hear negative and hopeless responses. What HAS helped you? Acne.org seems to be the biggest place to speak about this, but we NEED the word out, so the 'experts' can do the research instead of hoping for someone else to fix us.

Thanks for reading,

Indy.

[iRyRy]

I'm in the same boat. I'm motivated to repair my body and have done a lot of research in the past months. I have info to share:

Calcium D-Glucarate: To eliminate toxins (including retinoids) your liver combines glucuronic acid with the toxin to make it more water soluble. This process is called glucuronidation. However, there is an enzyme in our bodies that reverse the effects of glucuronidation and thus separates the two molecules. This is called beta-glucuronidase. Calcium D-Glucarate is known to inhibit this enzyme, and thus limit beta-glucuronidase greatly increasing elimination of toxins.

I'm going to pick some up later and see how that helps. People with long term affects often are shown to have high levels of vitamin A even years after treatment. So, I've been focussing on keeping my digestive system running smoothly and improving my liver function.

[IndigoRush]

I'm in the same boat. I'm motivated to repair my body and have done a lot of research in the past months. I have info to share:

Calcium D-Glucarate: To eliminate toxins (including retinoids) your liver combines glucuronic acid with the toxin to make it more water soluble. This process is called glucuronidation. However, there is an enzyme in our bodies that reverse the effects of glucuronidation and thus separates the two molecules. This is called beta-glucuronidase. Calcium D-Glucarate is known to inhibit this enzyme, and thus limit beta-glucuronidase greatly increasing elimination of toxins.

I'm going to pick some up later and see how that helps. People with long term affects often are shown to have high levels of vitamin A even years after treatment. So, I've been focussing on keeping my digestive system running smoothly and improving my liver function.

Thank you so much for replying. I'll look into this. As for me, something 'odd', or at least I think it's odd, has happened. I started taking 'Sepia', a homeopathic treatment a couple of days ago. The man who's given it to me said that once I find something that works (he seems more sure that I can fix myself than I do) my body will go through a detox and I could feel worse for a while. As you'll know, the side effects of 'tane make you feel pretty bad permanently. I'm rarely ill however. Today I've not done much, just had a light lunch (Baked beans, salad, fruit and a cookie) and suddenly, as I was going to lift some (not very heavy) weights in my room, which I do regularly, my head really hurt.. as in a headache. I used to get these on Accutane a lot and rarely get them these days. Another thing that I never do is be sick. I've stopped drinking alcohol due to wanting to help my liver out and what not, and the last time I was sick was last August... I remember the date because that's when I last had alcohol... And it was the worst hangover I've ever had. I was never a big drinker anyway. So, today, not long ago - as well as the terrible headache, I felt very ill. I tried to put off being sick, but thought I better drink some water (couldn't do food).. I was near the sink and suddenly felt the NEED to throw up. No putting it off this time, it was going to happen. I recognised that horrible feeling and knew I was going to throw up. Here's the weird part... my body tensed, and hurt, but nothing came out. Twice.. It just seemed odd to me.

Another problem I've had recently is constipation. I'm afraid I could develop IBS, as I've heard a lot of people getting it years later.

After being sick, or rather, not.. I feel really emotional. I'm a man.. and not that it's un-manly to cry (in my opinion), I never cry. This stuff just gets shut up inside me. I get depressed, but I can't be bothered to cry. But I did, just now... A lot.

My point is, and I'm probably wrong, these things don't normally happen to me. I don't want to throw up after eating a normal lunch. What if my body is trying to sort itself out because of the homeopathic pills? That'd be amazing. I'm not saying it is though. Everyone gets sick at times, and I've been over-stressed lately because I've been reading lots of negative stuff on forums that just make me afraid.

However, some people swear by homeopathy. I don't trust pharmaceutical companies and I believe it's possible that Homeopathy works. Scientists/Doctors etc. say it's all boll*cks, but what if they want people to think that because people wouldn't need to see them? I'm just thinking out loud now, so I will stop my rambling. I will try not to make my replies this long in future! lol..

And if ANYTHING improves, I will let you know.
Stay in touch

[fredjones]

hey what was your weight in kgs and the mg dosage you took daily?

it really sucks that you have all those side effects...luckily i guess im one of the majority where the side effects haven't been life changing just really annoying....dry skin everywhere, tiredness, jaw locking and joint pains

i see your taking a shit ton of supplements ... in my opinion that doesn't look like a good idea because the problem came from you putting a highly toxic thing into your body so i think a good way to counter act that is to put all natural things in your body to flush it out. Basically drinking a lot of water, eating a lot of fruits and vegetables and like fish oil supplements should do it. keep it simple is the best way imo.

by doing that youre helping your body 'get back to normal' where as if you take a lot of supplements youre bombarding your body once again with a lot of products that it isn't used to

also try the 'mind over matter' because your body is the product of the brain. the brain controls what chemcials are released which determine the make up of the physical body. im a strong believer in the power of the mind to heal the body just by cognitive thinking (im a psychology major) and there are a lot of examples of this such as hardcore monks doing crazy shit with their body just by focusing their minds.

if you truly use your mind to keep positive energy in your thoughts then maybe over time the brain will believe it and start acting that way

but this is just my opinion and what i plan to do once im finished my course

Edited by fredjones, 07 May 2011 - 12:54 PM.

[IndigoRush]

hey what was your weight in kgs and the mg dosage you took daily?

it really sucks that you have all those side effects...luckily i guess im one of the majority where the side effects haven't been life changing just really annoying....dry skin everywhere, tiredness, jaw locking and joint pains

i see your taking a shit ton of supplements ... in my opinion that doesn't look like a good idea because the problem came from you putting a highly toxic thing into your body so i think a good way to counter act that is to put all natural things in your body to flush it out. Basically drinking a lot of water, eating a lot of fruits and vegetables and like fish oil supplements should do it. keep it simple is the best way imo.

by doing that youre helping your body 'get back to normal' where as if you take a lot of supplements youre bombarding your body once again with a lot of products that it isn't used to

also try the 'mind over matter' because your body is the product of the brain. the brain controls what chemcials are released which determine the make up of the physical body. im a strong believer in the power of the mind to heal the body just by cognitive thinking (im a psychology major) and there are a lot of examples of this such as hardcore monks doing crazy shit with their body just by focusing their minds.

if you truly use your mind to keep positive energy in your thoughts then maybe over time the brain will believe it and start acting that way

but this is just my opinion and what i plan to do once im finished my course

Thanks for the reply. I have a day off work this coming Thursday, so might call into the doctors.. Not sure. But I'm not sure what MG I would of taken, but I'm pretty sure it would of been the advised amount for my weight. I've heard people getting problems on low dosage, so I'm not sure it's too relevant, but I will find out if I can. I mentioned it to a doctor before, but he wouldn't believe that Accutane caused any problems, so ignored and tried to get me to take anti-depressants. I know he's a nice chap, but they don't know much about a drug like this and once I broke down in front of him when he asked "How do you see the future?", so from his point of view I'm depressed and need drugs for it (lol).

Interesting you say about the Mind-Body connection though. I've read the secret, which you may know is about the supposed law of attraction. I'm not saying it's not true, but I can't see how I attracted acne to my life, and then all this. For a while, I was trying to go about being positive about everything but I couldn't keep it up for long. I have a girlfriend now, and she is amazing, but I can have a great night and then it get's to 'that time' and I just really don't feel up for it. And I know I should. So I'm constantly reminded of my problems. But there's a book, for example, I've read called 'How to heal your body with your mind'... it's interesting. Also 'The Power Of Your Subconscious Mind' has a lot of reviews (on Amazon) saying it works.. That, again, being the law of attraction but explained differently to The Secret.

However, I think I need to take action. Yes, I am taking a lot of supplements, though as I said - I'm not taking all of those listed. They are one's I've tried over time. They're all 'natural' I believe, so they shouldn't cause any harm unless I were to overdose. As far as I know, they don't interact with eachother. I could probs cut some out though

Indy

[roadrashed]

I'm so sorry to hear what your going through and i have know idea how to help you but i thought maybe you could request a pinned thread or a section of the site on accutane's long term side effects? i know its rare to have them and it may be discouraging for other accutane users but people should be aware of it and that way people like yourself could share ideas and help each other. Good luck.

[IndigoRush]

I'm so sorry to hear what your going through and i have know idea how to help you but i thought maybe you could request a pinned thread or a section of the site on accutane's long term side effects? i know its rare to have them and it may be discouraging for other accutane users but people should be aware of it and that way people like yourself could share ideas and help each other. Good luck.

That's an excellent idea. I know what the moderators are like.. They'll read this. Mr/Mrs Mod... Fancy pinning this for us? Thanks.

[rifkah6]

Hi Indigo, Ganoderma lucidum extract may be something worth considering - it is a medicinal mushroom that is supposed to have incredible healing and detoxifcation abilities due to the high anti oxidant and glyconutrient content. Also, come over to the nutrition board - there are loads of very experienced and knowledgeable people there who don't generally hang around the medications section who would definately be able to help you.

[IndigoRush]

Hi Indigo, Ganoderma lucidum extract may be something worth considering - it is a medicinal mushroom that is supposed to have incredible healing and detoxifcation abilities due to the high anti oxidant and glyconutrient content. Also, come over to the nutrition board - there are loads of very experienced and knowledgeable people there who don't generally hang around the medications section who would definately be able to help you.

Thank you dude I'll do just that. I've learnt all about anti-oxidants. Lovin' the green tea and blueberries haha.

Indy

[rifkah6]

No worries, look forward to seeing you there - everyone is very lovely, open minded and most importantly anti-accutane, anit-bi's etc etc etc. Detox, internal cleasning and healing through supps and food are the order of the day.

Green tea and blueberries most certainly do rock, but there are tonnes of other things to embrace and avoid in equal measure, some of which you might not even considered.

All the best and see ya there soon,

rifkah

Edited by rifkah6, 08 May 2011 - 06:15 AM.

[iRyRy]

I'm also looking into bowel/liver cleasing.

[IndigoRush]

I'm also looking into bowel/liver cleasing.

It's a good idea.
I know to do it properly you should withdraw from bad foods (like milk, bread, sugar, alcohol) for about a week... But I'm not sure I can go a week without cakes and what-not.
If I knew you had to do it just the once, obviously I'd do it.

For now though, I think I'm doing my liver some good with the milk thistle and dandelion root extract. I ordered the supplement you said about... 'Calcium D-Glucarate', though I'm not sure it'll really work as surely within 5 years my body would've elminated the toxins... But we'll see. You started with it yet?

[iRyRy]

I'm also looking into bowel/liver cleasing.

It's a good idea.
I know to do it properly you should withdraw from bad foods (like milk, bread, sugar, alcohol) for about a week... But I'm not sure I can go a week without cakes and what-not.
If I knew you had to do it just the once, obviously I'd do it.

For now though, I think I'm doing my liver some good with the milk thistle and dandelion root extract. I ordered the supplement you said about... 'Calcium D-Glucarate', though I'm not sure it'll really work as surely within 5 years my body would've elminated the toxins... But we'll see. You started with it yet?

No, I can't find it in stores. I'll have to order it.

Some people say they have high vitamin A even years after Accutane, so perhaps some of it stays in your liver. Your liver does store excess vitamin A when it can. Maybe this is why some get the long term side effects, their liver absorbs it, for some reason it can't get rid of it fast enough so it just continues to be deactivated and reactivated through the process of glucuronidation and beta-glucoronidase.

I've noticed something. When I take a tablespoon of olive oil, the next few days are hell and it's like I'm reliving Accutane. My bones begin to ache more, hair falls out more, and my skin begins to shed like crazy. I think it's because, when you consume a good amount of fat you gallblader will release your bile which contains all the toxins into your bowels, and then some of it is excreted while some is reabsorbed causing the side effects to reoccur.

Edited by iRyRy, 11 May 2011 - 01:11 PM.

[clearskinwannabe]

Hi Indigorush,

I am from the UK also, whereabouts are you?

I finished taking Roaccutane 4 months ago and I still suffer from poor digestion i.e. sloppy stool samples. Also one of the more major lasting effects is the joint pain I get in my knees, it has considerebly got better since stopping the medication however is still apparent and is very painful after doing any exercise.

Do you have any tips on supplements etc that may help with these problems? I am in the process of seeing my doctor in relation to these on going syptoms.


Thanks

[VanceAstro]

What can I say...you are not alone.

Accutane gave me:

-Premantent dry eyes [very, very annoying]
-IBS
-hair loss

Also, I was feeling much worse [mentally] even though my skin was [and is] better than ever.

As for the dry eyes, muscle pains etc. Isotretinoin can cause "mild carnitine deficiency" symptoms.

It's interesting because people with dry eye syndrome have lover levels of carnitine in their tear film.

http://www.ncbi.nlm....pubmed/19156017
http://www.ncbi.nlm....pubmed/18520508
http://www.ncbi.nlm....les/PMC2861661/

Edited by VanceAstro, 12 May 2011 - 01:20 AM.

[IndigoRush]

Hi Indigorush,

I am from the UK also, whereabouts are you?

I finished taking Roaccutane 4 months ago and I still suffer from poor digestion i.e. sloppy stool samples. Also one of the more major lasting effects is the joint pain I get in my knees, it has considerebly got better since stopping the medication however is still apparent and is very painful after doing any exercise.

Do you have any tips on supplements etc that may help with these problems? I am in the process of seeing my doctor in relation to these on going syptoms.


Thanks

Hi. I'm from Norwich. I don't have much to suggest to be honest. Vitamin D might help if you're not taking it already. MSM powder may too.. I got both off eBay.
They don't fix the problem though ... Just cover up. Like make-up

[IndigoRush]

What can I say...you are not alone.

Accutane gave me:

-Premantent dry eyes [very, very annoying]
-IBS
-hair loss

Also, I was feeling much worse [mentally] even though my skin was [and is] better than ever.

As for the dry eyes, muscle pains etc. Isotretinoin can cause "mild carnitine deficiency" symptoms.

It's interesting because people with dry eye syndrome have lover levels of carnitine in their tear film.

http://www.ncbi.nlm....pubmed/19156017
http://www.ncbi.nlm....pubmed/18520508
http://www.ncbi.nlm....les/PMC2861661/

I've tried this supplement... actually, I'm still taking just to use them up.. Didn't do anything for me.. It's L'carnitine I'm using, but I'm sure that'd be the same thing

[IndigoRush]

I'm also looking into bowel/liver cleasing.

It's a good idea.
I know to do it properly you should withdraw from bad foods (like milk, bread, sugar, alcohol) for about a week... But I'm not sure I can go a week without cakes and what-not.
If I knew you had to do it just the once, obviously I'd do it.

For now though, I think I'm doing my liver some good with the milk thistle and dandelion root extract. I ordered the supplement you said about... 'Calcium D-Glucarate', though I'm not sure it'll really work as surely within 5 years my body would've elminated the toxins... But we'll see. You started with it yet?

No, I can't find it in stores. I'll have to order it.

Some people say they have high vitamin A even years after Accutane, so perhaps some of it stays in your liver. Your liver does store excess vitamin A when it can. Maybe this is why some get the long term side effects, their liver absorbs it, for some reason it can't get rid of it fast enough so it just continues to be deactivated and reactivated through the process of glucuronidation and beta-glucoronidase.

I've noticed something. When I take a tablespoon of olive oil, the next few days are hell and it's like I'm reliving Accutane. My bones begin to ache more, hair falls out more, and my skin begins to shed like crazy. I think it's because, when you consume a good amount of fat you gallblader will release your bile which contains all the toxins into your bowels, and then some of it is excreted while some is reabsorbed causing the side effects to reoccur.

Interesting. Why would you take a tablespoon of olive oil? I've heard you can do that as part of a detox. I feel terrible at the moment

[Max-]

Not sure if it is a good idea for you to take so many types of supplements since they are chemicals (to me).

My treatment for my side effects is rather simple. It consists of Cabbage, Celery, Broccoli and Granny smith. I blend them all together with a blender and drink it fresh every morning. It is good for our bowel.

Edited by Max-, 12 May 2011 - 07:18 PM.

[lamarr1986]

You should NOT be taking omega 3 in any form.... You need to stop taking that and trust me on this one. I have all the side effects you have listed other than dry mouth and libido problems. I do have some that you don't though...

anyway....a drug called mepacrin worked wonders for me in lowering the inflammation. I also have a list of supps that help me somewhat....

I manage to hold down a Job and finished uni whilst dealing with this. I take:

Curcumin 500mg twice per day, milk thistle twice per day, resveratrol/grapde extract twice a day, Im currently also taking gamma linoleic acid in borage oil twice a day.

I also take B vitamins occassionally as well as a supplement called piracetam (I take this with choline), this has worked wonders for my cognitive function and it is actually very good for your mind long term.

For my hairloss I Use a laser system and a moderate strength steroid once every few days (Keeps the inflammation down and the lasers help prevent any potential skin damage from the steroid).

These things have helped control my long long list of sides, I also use lasers on my face and apply topical rosex gel to my eyelids for my servere ocular rosacea. I have to use eyedrops all day and cold compresses plus have my meobian glands expressed. I am also trying IPL for my dry eyes.

Funny thing Is i still get awful folliculits in my beard caused by tane....which I have to now use two topicals for to keep it in relative check.

Anyway PLEAsE stop the omega 3 immediately, fish oils and cod liver oil is toxic to us post tane!