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Help! Suffering From Accutane Permanent Side Effects

MemberMember
1
(@nick-s-2)

Posted : 06/19/2015 9:32 am

Hey guys,

 

I really need help I'm really freaking out. I started Accutane in January 2014 for 6 months on 60mg ( my skin wasn't even that bad!!!! AGHH!) i'm really upset writing this, but basically I have been suffering from so many mental and physical side effects and ive done almost everything to combat them but it seems they are persisting. Could they ever go away, my life is seriously like a nightmare i was off work for 6 months from january - june and ive just started back. My problems include:

 

Dry hair, hair loss (literally if i wash my hair once a week and slather on argon oil it just absorbs it and it is soooo dry) and im scared incase i will go bald. fingers crossed i wont

Dry lips! how do i still have this after one year!!

Dry eyes - I feel like i cant see anything atal in the dark, my eyesight has got so much worse i also feel like my eyelids are so heavy for some reason.

 

IBS - I dont want to say this has ruined my life because i am trying to stay very optimistic, but this has had such a devastating effect on my mental health.

Anxiety - I cant travel anymore at busy times because im scared i will have an IBS attack ( i understand some people might find this funny, but its really hurt me), i have to go to CBT every week. I get very bad spells of OCD like intrusive thought.

Depression - I'm very irritable, but also very sad. Nothing makes me happy anymore. Sometimes I just feel so numb like no emotion atal. Sometimes i can be happy but

Lobido - I have quite a low lobido i guess this is because im anxious but.

 

I also feel like i get a sore back and neck when im bending down for too long!

 

 

I cut out all dairy, gluten and alcohol from my diet about 4 months ago i do feel some improvement but not much. I drink aloe vera juice everyday, take food supplements, take vitamin B complex. I eat fresh. I have just started taking milk thistle and I am thinking about doing a water fast but I spoke to a nutritionist who wouldn't advise it as maybe I will put too much pressure on my liver and it has been through enough.

 

 

 

Like i said I am trying to stay positive about this but I am very upset about this past year and a half and i know so many people have problems that are so much worse than this.

 

So guys do you think I might get better, could accutane side effects last a year after your last pill?

 

please respond guys!!

 

thank you all for reading, have a beautiful weekend

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MemberMember
19
(@rittdk01)

Posted : 06/19/2015 8:01 pm

I got ibs side effects that lingered for 3 years. I hadn't even heard of the ibs/accutane link til after they had went away. Dry skin on my body lingered for a few years also. All side effects went away over time as my oil came back. Part of the ibs is mental for sure. Eat a really healthy diet specifically for the ibs problems. Use aveeno lotion on body, do aveeno baths and good lip balm. I only used water to wash my face for 7 yrs after accutane. I didn't lose any hair but any u lose is actually from the hair being too dry and breaking.

 

The side effects definately went away in my case.

gold casio and Nick S liked
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MemberMember
1
(@nick-s-2)

Posted : 06/20/2015 8:19 am

I got ibs side effects that lingered for 3 years. I hadn't even heard of the ibs/accutane link til after they had went away. Dry skin on my body lingered for a few years also. All side effects went away over time as my oil came back. Part of the ibs is mental for sure. Eat a really healthy diet specifically for the ibs problems. Use aveeno lotion on body, do aveeno baths and good lip balm. I only used water to wash my face for 7 yrs after accutane. I didn't lose any hair but any u lose is actually from the hair being too dry and breaking.

 

The side effects definately went away in my case.

 

 

woohoo that is very reassuring, thanks for replying so oils took quite a while to return to your body then? did your ibs gradually get better over the 3 years or did it get worse then suddenly better

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MemberMember
19
(@rittdk01)

Posted : 06/20/2015 3:54 pm

It started out as a little discomfort a few months AFTER I finished accutane. Then I would feel like I had diarrhea (that burny feeling) that would last for days. I had diarrhea and constipation, but the diarrhea feeling was the worst. It would come and go, but did last for around 2-3 years. I fasted every few months if I was feeling bad, seemed to work. Eat a bowel healthy diet with yogurt or probiotics.

 

It definately got better gradually over time and easier to deal with.

 

And yeah, the oils took a few years to fully return to my body. I literally covered my whole body in aveeno lotion after I got out of the shower. I probably should have skipped showering a bit, but can't stand too.

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MemberMember
89
(@lll3)

Posted : 06/21/2015 9:47 pm

it's been 5 years since accutane for me. I have been and continue to loose my hair. I have chronic fatigue and I'm rarely in a decent mood. I'm definitely the optimistic type of person and I force myself to get things done but this fatigue and soreness has been overwhelming. Nobody has any helpful advise. I've changed my lifestyle including diet and exercise but still, it's really tough.

 

I don't mean to be a downer but this is my reality. I will never give up, I'll keep fighting and trying different things.

 

Best of luck dude.

 

oh one piece of advise: trying eating more raw living foods, it helps.

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MemberMember
0
(@pssssssssst)

Posted : 06/22/2015 5:12 am

How do you know the hair loss is accutane-related?

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MemberMember
1
(@nick-s-2)

Posted : 06/22/2015 7:46 am

it's been 5 years since accutane for me. I have been and continue to loose my hair. I have chronic fatigue and I'm rarely in a decent mood. I'm definitely the optimistic type of person and I force myself to get things done but this fatigue and soreness has been overwhelming. Nobody has any helpful advise. I've changed my lifestyle including diet and exercise but still, it's really tough.

I don't mean to be a downer but this is my reality. I will never give up, I'll keep fighting and trying different things.

Best of luck dude.

oh one piece of advise: trying eating more raw living foods, it helps.

That's a shame. I feel terrible for you. I have severe anxiety and get bad depression sometimes what really helps me is going to my CBT.(You should try it, it really makes things a lot easier to cope with!) thinking about being tired will make you tired. Like when someone yawns near you, you yawn. I think with a positive mental attitude you can really really improve things and who knows maybe cure things! i think you will definitely get better but its just a question of time!!

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MemberMember
19
(@rittdk01)

Posted : 06/22/2015 3:33 pm

How do you know the hair loss is accutane-related?

I know (eye roll). I would take anything with a grain of salt.

 

^^^^ I got down BEFORE accutane, because I had scarring acne. I understand it would b mentally taxing if u tried everything and still break out, but everything bad was not because of accutane. Also, for the great majority, accutane is a cure or makes acne a lot easier to deal with.

 

One regret I have is getting on this site and getting scared out of going on accutane for a year.I would have a lot less scars if I just would have done it a bit sooner. Anybody who is scarring, even if they aren't breaking out severely, needs to go on accutane if creams and pills don't work.

 

Scars will f your head up worse than accutane could.

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MemberMember
1
(@nick-s-2)

Posted : 06/23/2015 11:19 am

How do you know the hair loss is accutane-related?

How do you know it's not?

Dubya_B liked
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MemberMember
19
(@rittdk01)

Posted : 06/23/2015 3:23 pm

5 years later means male pattern baldness. The hair can thin on accutane by breaking off from being so dry, not to b confused with regular balding.

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MemberMember
359
(@dubya_b)

Posted : 06/23/2015 5:35 pm

How do you know the hair loss is accutane-related?

 

Hair loss is listed as a potential side effect of Accutane. Results may vary for each individual.

It is telogen effluvium, not from being dry and breaking off.

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MemberMember
0
(@pssssssssst)

Posted : 06/23/2015 6:14 pm

 

How do you know the hair loss is accutane-related?

How do you know it's not?

Exactly. It's impossible to tell.

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MemberMember
1
(@nick-s-2)

Posted : 06/24/2015 1:53 am

 

 

How do you know the hair loss is accutane-related?

How do you know it's not?

Exactly. It's impossible to tell.

Not really. I had beautiful shiny hair then I started accutane and it went ugly and dry and never went back. It was the accutane ;)

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MemberMember
0
(@visiblegirl)

Posted : 03/24/2016 6:24 pm

Hey guys, I'm newly off accutane, finished around Christmas. I didn't really have any problems with milia or weird dry skin patches before accutane, and I obviously had dry skin patches during my regimen, but I didn't really have milia during accutane. Now I'm getting milia everywhere it seems. I was reading that it could be correlated to accutane, and I'm just wondering if anyone else experienced problems with that? Particularly other young females (because that's the most likely population apparently). Also persistent genital dryness? My face has also been more persistently flushed (probably not correlated, but figured I'd throw that out there). My hair is falling out like crazy, and my lips are still a tad chapped, but I'm used to that by now. I also just recently moved from the US to the UK, and silly me thought IBS-like symptoms were from traveling so much! I guess now I know. There was a short time during my regimen where I was taking above my weight limit dosage, because I lost weight rapidly, so could that have affected the severity of moderate-long term side effects?

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MemberMember
5
(@nine_lives)

Posted : 04/26/2017 2:16 pm

Hello ladies and gentlemen,

It was only yesterday that I made the connection between ten years of sexual dysfunction and taking accutane. I was prescribed accutane at 14 years old for my moderate acne. It cleared up my skin but stole my sex drive. I can honestly say, I no longer have a libido or sexual desire, and I can only link this to accutane use as I have never been on other prescription meds and had normal sex drive prior to usage. Otherwise I am a healthy, athletic male, who has experimented with high levels of testosterone as well as other drugs but to no avail. My sex drive remains at zero. Words cannot express the regret and deep sadness I feel, when I reflect on the fact that I may have potentially lost one of the most important things in life which will and probably has affected countless relationships, my personality, my susceptibility to depression and the fun/excitement I have missed out on, in exchange for an acne-free face. This is beyond words. There is no justice here, and I doubt there is going to be a happy end to this story.

I have seen many people proposing reasons as to why accutane affects libido. I have a theory which I have not seen anyone put forward yet. However it seems to account for a lot of the reasons changing hormonal levels etc. has had little effect on libido. To look at the effect of a drug on sex drive we must ultimately look at the brain, as this is the place all libido and sexual desire is derived from. Hormones alone dont give you, your libido, hormones stimulate neuronal activity in specific areas of the brain, it is this activity which gives you a libido.

Bremner et al, is one of the only studies which looked into functional brain imaging of patients treated with accutane (Isotretinoin) (1).This study revealed that Isotretinoin specifically altered the activity and metabolism of a brain region called the orbitofrontal cortex in those who took Isotretinoin versus controls. Unfortunately, brain images were not taken after treatment was discontinued, so we cannot say whether these effects were reversed once treatment was removed or whether they persisted. I have contacted an author of the study for more information. Given the possibility that Isotretinoin can cause epigenetic changes, it is possible that these changes are maintained after treatment.

Now, interestingly one of the only studies which has been conducted on brain activity in hypoactive sexual desire disorder in males, which is essentially sexual dysfunction. Showed that, the major difference in response to sexual stimuli, in males with sexual dysfunction and normal males was a difference in the activity of the orbitofrontal cortex (2). As such, it appears the orbitofrontal cortex plays a key role in sexual desire, and it appears that Isotretinoin specifically alters activity of this brain region.

Given this, it seems highly plausible to me that this could be the culprit we have been looking for. However what is really needed now, is to see whether those changes in the orbitofrontal cortex remained after treatment had been stopped. As it is also quite possible that these changes were only temporary. If these changes in orbitofrontal activity/metabolism were reversed after a period of stopping treatment, then my theory is incorrect.

Unfortunately, this puts us fellow sufferers in a slight predicament. The orbitofrontal cortex is not a very well studied part of the brain. If it has been changed in a fundamental way, possible treatments will be difficult to come by. This will sound extreme, but I can only propose deep brain stimulation as a viable and potential treatment. This is a medical technology which is progressing at a rapid rate. It has recently been used for Anorexia, and so I can see someone easily making the case to use this for a debilitating issue such as sexual dysfunction. Interestingly, a deep brain stimulation protocol for the orbitofrontal cortex has already been developed by Scientists out of Oxford University. One was implanted into a woman with low sex drive, which markedly improved her sex drive. According to this article (3). However I cannot actually find the original paper, in which the woman had the device implanted. If someone could post it, that would be great.

I am sorry this is such a long post, but I wanted it to be conclusive and offer some hope, in a seemingly hopeless situation. I can only ask that we all investigate this further, but what is more important, is that we email and message researchers and neurosurgeons raising the topic of brain imaging studies and deep brain stimulation for sexual dysfunction. If we remain on forums and message boards, nothing will be done. Nobody will bother researching conditions which they dont know exist or see no clinical benefit in treating.

Sexual dysfunction in many ways is a far greater and more debilitating ailment than anorexia or many illnesses. It strikes us in a very personal way, and in a way that most people would never be able to appreciate or understand. Additionally, this may also be the mechanism by which other drugs such as Finasteride work.

Feel free to message me, also send over email address with your symptoms /info. We need to start to amass patient with these problems if we are to have any kind of case or chance of making this a legitimate topic of research/concern.

Also if anyone has had any success with Bremelanotide / PT-141, please let me know.

My email is [Removed personal information]

I tried to make a group, as I feel we need something more concrete than forums. Please make better suggestions. - [Edited link out]

Much Love,

Nine livez

 

(1) - http://ajp.psychiatryonline.org/doi/full/10.1176/appi.ajp.162.5.983

(2) - https://www.ncbi.nlm.nih.gov/labs/articles/14561426/

(3) - http://brainblogger.com/2009/01/08/deep-brain-stimulation-for-pleasure/

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