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Posted (edited)

I fasted for a week and saw no improvement.

Dave22k from the "All Things Male forum" went 23 days and saw no improvements.

Fasting seems to only help people with strictly gastrointestinal side effects.

Edited by Dubya_B

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Posted
1 hour ago, MonsterDiesel said:
On 7/14/2018 at 2:54 PM, aforsberg said:

Took Accutane in 2009 Myself
Found the cure
Fast for as long as possible, 20 days is a good number to work for.

When your fast is over eat farm fresh food. Remember we are designed to eat fruits vegitables and the seeds.

Have a nicce day

This has been on my mind lately.  What changes would a long fast produce?  Longest I went was 3 days.  Other Tane users fasted this long and saw improvements?

Careful, I believe this guy was trolling. Did you see any results from the 3 days? I've been curious about this. 

 

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Posted
On 10/07/2018 at 12:17 AM, Ákos said:
 

To those who wrote this:

Your doctor just wrote “Accutane” in a piece of paper, but YOU are taking it.

There is a chance than next year you will remember me, when the “temporal” effect of Accutane ends and your acne returns. Or, if you manage to get a “permanent” effect on sebum production, you will remember me some day in the future, when you experience some strange effects, mixed up with your depression.

I guess you have already decided how much “temporal” or “permanent” you want the effect to be, and what exact dose you have to take to achieve that result.

Good luck with the experiment!

I take full personal responsibility for the decision to take this drug. I am fully aware of its current recognized side effects and I am fully aware that there may be long term consequences that we dont yet know about. I accepted the risk when i asked for a dermatology referral.

I have actually had to come off it, because of ophthalmic side effects. My conjunctivitis was intractable. I tried multiple different brands of lubricating eyedrops; cromoglicate eyedrops and chloramphenicol eyedrops. Nothing fixed it. I ended up graduating with bright red eyes - i wore sunglasses the whole day - except when i went up to shake hands with the uni president. Lowering the dose from 60 to 40 for 5 days didn’t help. I came off it because I was seriously worried it was going to progress to Keratitis - which can cause permenant damage to vision. I’ve been off it 1 and a half weeks and thankfully the conjunctivitis has now gone. The Blepharitis hasnt completely gone yet, but gets better everyday and you wouldnt now notice it unless you were looking for it.

I did plan to start the drug again at a lower dose once my eyes got better. But i have so little active acne now and it seems to be continuing to get better even though ive stopped the drug. So i’m now thinking that i’m not going to restart it.

In total I did 12 weeks - 8 weeks at 80 and 4 weeks at 60. So I’ve got a reasonable cumulative dose. 

My skin looks very good atm. The accutane redness is almost gone from my face now.

I’m thus very pleased with the results atm, but being on it was a very unpleasant experience.

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Posted (edited)
On 7/19/2018 at 3:59 PM, Benjamin94 said:

 

Removed by author.

Edited by Deleted Account

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Posted

Make sure you dont call it Finasteroid in front of the specialist - its Finasteride.

One research article doesnt make something medical fact. There were research articles linking MMR to autism remember. Granted I’d rather you took your information from research articles rather than forums. But still be cautious.

This drug has had permenant side effects on you - I accept that. But the majority dont get permenant side effects. The question you should be asking is why did you get permenant side effects and others didnt. 

Why did other people heal from the side effects and you didnt? IMHO There is something else wrong with your health that wasnt accutanes fault and whatever this is - it stopped you from healing from accutane.

Dont put it down to bad luck - we’re talking about epigenetic changes in millions of cells - You cant just say the switch was flipped in a bad way in millions of cells and that was just bad luck. Not when your on a scale of millions. 

We may well find that there is pharmacogenetic reason why you’ve responded badly to the drug. This happened for Azathioprine, with the discovery of TPMT.
 

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Posted (edited)
On 7/19/2018 at 5:37 PM, Benjamin94 said:

 

Removed by author.

Edited by Deleted Account

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Posted (edited)

Hi Devolution.

All of the drugs you have mentioned that appear to cause this condition are anti-androgens, not necessarily 5-ar inhibitors. Lupron, for one, is a potent GnRH receptor agonist that causes desensitization of the GnRH receptors after some time. This leads to drastic reduction in androgen and estrogen production in the gonads and adrenals. It may also effect local steroid hormone production is certain tissues.  Saw palmetto and Accutane have been observed to have some direct effects on the androgen receptor, in addition to their decreasing 5-ar activity.

@Benjamin94
Truly, thank you for being open about the negative side of your Accutane experience and for being logical and constructive in your criticism of the viewpoint shared by many in the post-Accutane community. If our convictions could not withstand such criticism, then they would no be worth pursuing any longer. As you said, most people take the drug and are fine. Even the studies showing profound effects on enzyme activity ( e.g.: loss of %80 of 5-ar type-I activity in skin biopsies, with only a minor concomitant decrease in serum 5-ar metabolites) are assumed to contain a sample group where the majority did not suffer long-term consequences. There must be some genetically-determined  susceptibility we share which leads to persistent side effects, but I must agree with Devolution that it would be wrong to consider that susceptibility a form of ill health on its own.

.

Edited by Dubya_B

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Posted
17 hours ago, Dubya_B said:

I fasted for a week and saw no improvement.

Dave22k from the "All Things Male forum" went 23 days and saw no improvements.

Fasting seems to only help people with strictly gastrointestinal side effects.

whats your side effects? Have you dry eyes?

 

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Posted
On 6/20/2018 at 3:16 PM, hatetane said:

We need you to report your sides! We must make the regulators acknowledge
POST ACCUTANE SYNDROME!
I know that in the big scheme of things taking action won't necessarily help you but it will stop this happening to others and I really hope that by getting recognition we can then insist on a task force to research the condition and find a cure!
Many men are now coming forward but it is mostly older men who have been suffering for years - we still need young men to come forward
to report their side effects and to explain how accutane impacted their lives.

 

We need age and sex(compulsory for yellow card purposes).  approx. dosage and duration. List of side effects and please include suicidal ideation if you have ever experience this.
Describe you case history as if you were telling your story to a solicitor.
 
Optional - explain why you never reported before - I want decision makers to try and understand why young men don't come forward.
Optional - explain the way in which your dermatologist treated you before during and after accutane.
 

Its a very sad thing to imagine the amount of young people suffering in silence.

Those with a voice must speak up and thankfully it can be done anonymously if you prefer.

 

Below is a list of emails -  you can copy and paste and send as one.

You must state that you are addressing them all as individuals and that you want an acknowledgement and a response from each of them.

 

Optional  - cc me in so that I can gauge response and evaluate  how data is being recorded.  samward4@hotmail.com

 
Best

Sam

 

The lead person heading up the next review is      tatiana.magalova@sukl.sk     cc  pavol.gibala@sukl.sk

 

 june.raine@mhra.gov.ukalmath.spooner@hpra.iejan.neuhauser@ages.atmarianne.lunzer@ages.atjean-michel.dogne@unamur.beLaurence.Defays@fagg-afmps.bemaria.popova@bda.bgjulian.eftimov@bda.bgnikica.mirosevic@halmed.hrzeljana.margan@halmed.hraandreou@phs.moh.gov.cyjkkolos@phs.moh.gov.cyjana.mlada@sukl.czeva.jirsova@sukl.czdis@dkma.dk;TCA@dkma.dkmaia.uuskula@ravimiamet.eekatrin.kiisk@ravimiamet.eekirsti.villikka@fimea.fikimmo.jaakkola@fimea.ficlaire.ferard@ansm.sante.frcaroline.laborde@ansm.sante.frmartin.huber@bfarm.devalerie.strassmann@bfarm.deleokli@eof.gr;akapou@eof.grpallos.julia@ogyei.gov.hupalfi.melinda@ogyei.gov.hugudrun.kristin.steingrimsdottir@lyfjastofnun.ishrefna.gudmundsdottir@ima.isalmath.spooner@hpra.ieruchika.sharma@hpra.iec.macchiarulo@aifa.gov.itA.Cupelli@aifa.gov.itzane.neikena@zva.gov.lvZane.Stade@zva.gov.lvjolantagulbinovic@vvkt.ltSimonaKudeliene@vvkt.ltMarcel.Bruch@ms.etat.lu;n.petitpain@chu-nancy.framy.tanti@gov.mtjohn-joseph.borg@gov.mtnlhphar@cbg-meb.nlnlhphar@cbg-meb.nlhelgahaugom.olsen@noma.nokristin.kvande@noma.noaprzybylkowski@interia.plmagdalena.budny@urpl.gov.plana.martins@infarmed.pt;marcia.silva@infarmed.ptroxana.stroe@anm.ronicolae.fotin@anm.rotatiana.magalova@sukl.skmilena.bergoc@jazmp.si;gabriela.jazbec@jazmp.sidmontero@aemps.eseasegovia@aemps.esHPHARMACOVIGILANCE@mpa.sejulie.williams@mhra.gov.ukpatrick.batty@mhra.gov.ukttrenque@chu-reims.frmarieke.debruin@sund.ku.dkstephen.evans@lshtm.ac.ukBrigitte.Keller-Stanislawski@pei.deherve.le-louet@aphp.frLennart.Waldenlind@outlook.commarco.greco@eu-patient.euavanderz@xs4all.nl;ray@andersonspharmacy.co.ukmyhr@online.no

 

 

 

andrew.beint@alliancepharma.co.uk   
pharmacovigilance@alliancepharma.co.uk              (Manufacturers of isotretinoin)
 
 
medinfoeurope@sunpharma.com                         manufacturers of isotretinoin
 
 
simon.rivers@roche.com 
burgesshill.pm@roche.com                            Simon Rivers in main contact for isotretinoin UK, the 2nd two email addresses may not be the best ones to use but they are the only onesI could find
 
 
Leigh.Henderson@mhra.gov.uk                  Leigh Henderson  MHRA
Please guys - we will only get somewhere if everyone reports their side effects.
The pharmaceutical companies are reviewing accutane in the coming months so this is the best time to report your side effects.  Please list all your side effects as they all get entered into the data. Make sure you ask for a response.

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Posted (edited)
On 7/19/2018 at 10:52 PM, Dubya_B said:

 

Removed by author.

Edited by Deleted Account

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Posted (edited)

Still a very popular drug as you can see.
Hopefully this will also mean continued research.
For anyone praising the drug, yea I was there once too.
(I just think those posts in this spot might be in the wrong place. We all know what Accutane can do)
Even thought about taking a second course after some zits came back.

Then some things started to happen probably within a year of finishing my course.
The first real sign that something abnormal was going on was probably the total diffuse hair loss that spanned the entire body. 
Also the facial flushing, headaches, feelings of warmth in my head( inflammation?) trouble concentrating.

For some the acne is so severe no cream is going to do a thing.
The problem must be fixed internally.
At least even the drug companies might be looking for alternatives.


Isotretinoin Drugs Market Expected To Reach USD 1567.1 Million with Major Players Mylan N.V. (US), Ranbaxy Laboratories Inc, a SUN PHARMA company. (India) and Teva Pharmaceuticals USA by 2023

https://www.openpr.com/news/1132596/Isotretinoin-Drugs-Market-Expected-To-Reach-USD-1567-1-Million-with-Major-Players-Mylan-N-V-US-Ranbaxy-Laboratories-Inc-a-SUN-PHARMA-company-India-and-Teva-Pharmaceuticals-USA-by-2023.html

The Global Isotretinoin Drugs Market has been evaluated as steadily growing market and it is expected that the market will continue to grow similarly in the near future. Increasing prevalence of various skin disorders, genetic disorders and cancer are major driving forces for the market. The market for isotretinoin drugs was around US$ 1257.0 million in 2016 and is expected to reach US$ 1567.1 million which is projected to grow at a CAGR of 3.2% by 2023.

Isotretinoin drugs causes some serious side effects such as birth defects and depression. To avoid these kind of situation, drug manufacturers are focusing more on new drug development. Due to strict regulatory policies, all the top players are trying to improve the efficacy and safety of isotretinoin drug.

Edited by guitarman01

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Posted (edited)

How many years do we think side effects have been reported?

I’m going to suggest - 30-40 years easily of reported negative side effects of taking Accutane. I mean look at the birth defect side effect for example, how do you think they came to know this? Prob because women taking it in the 1980’s suffered this terrible result, still not enough for them to ban the drug though obviously, I could go on and talk about depression too...

Lets face it, as long as there’s money to be made from pharmaceuticals - they really don’t give a fuck about you, why would this of changed just because it’s 2018??

This is not to discourage anyone reporting side effects but don’t get too hung up on thinking this’ll promote change...just my opinion based on the years this drug has been on the market - 1981 if I’m not mistaken.

Edited by TrueJustice

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Posted (edited)
On 7/20/2018 at 3:11 AM, TrueJustice said:

 

Removed by author.

Edited by Deleted Account

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Posted (edited)

Yeah but getting the drug banned is one thing, finding cures to the issues we’re all left with is another thing entirely!!

We need to be sure not to confuse the two.

I’m all for banning Accutane but I’m still left with all these issues 20 years after and still counting....
 

Edited by TrueJustice

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Posted (edited)
On 7/20/2018 at 7:36 AM, TrueJustice said:


 

Removed by author.

Edited by Deleted Account

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Posted (edited)
8 hours ago, TrueJustice said:

How many years do we think side effects have been reported?

I’m going to suggest - 30-40 years easily of reported negative side effects of taking Accutane. I mean look at the birth defect side effect for example, how do you think they came to know this? Prob because women taking it in the 1980’s suffered this terrible result, still not enough for them to ban the drug though obviously, I could go on and talk about depression too...

Lets face it, as long as there’s money to be made from pharmaceuticals - they really don’t give a fuck about you, why would this of changed just because it’s 2018??

This is not to discourage anyone reporting side effects but don’t get too hung up on thinking this’ll promote change...just my opinion based on the years this drug has been on the market - 1981 if I’m not mistaken.

@TrueJustice I am pretty sure you still haven't reported your side effects  - not helpful at all. Look at 'Accutane suicide thoughts help'  anyone who didn't  report had a hand in that. Reporting is not the only thing you can do, speak to your MP, speak to the press, appeal to the pharmas(ask for confirmation that they are recording your complaint), make youtube video and comment constantly on other accutane films so that people see your posts. Raise funds for Rxisk, Try and bring together new accutane victims so our group gets stronger. Organise a protest and or start a petition. Do you see that you are part of the problem by not doing anything. Reporting takes no more than 10 minutes  so there is no excuse.
And most importantly encourage others to report - not the opposite!!

Incidentally 80 suicides in the UK reported and 49 cases of erectile dysfunction!
Gross under reporting allows drugs to stay on the market.
I bet you have done nothing to get the Australian authorities to include sexual sides on the PIL. Europe
led the way on this so it should be a formality for you  -  Dubya certainly is doing all he can in the US!

If you can't help keep quiet! Edited by hatetane

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Posted
@Dubya_B Thank you. I respect you also as one of the more rational members of this forum. Certainly if the susceptibility to permenant side effects does turn out to be genetic, then of course it would not constitute ill health prior to exposure to the drug. I speculate however that its not going to be genetic. It feels too idiosyncratic to be genetic. In the example with Azathioprine and TPMP, the effect was very predictable and objectively quantifiable, i.e. profound myelosuppression. 

The drug will not be banned, not until there is an alternative. I guarantee you that, because the majority of people who take this obtain great long term benefit from it. Look at all the transformation youtube videos promoting it. 

@TrueJustice You say you’re “still counting”, implying that you believe you’re developing new side effects after 20 years. Now I accept that its possible that you are right, but do you understand how from an outside point of view, what you’re saying looks very unlikely to be true. I’ve said this to you before, but i want to say it again. You are going to get more and more medical problems as you get older - this is life. Are you going to blame them all on Accutane? At what point are you going to stop blaming them on accutane?

@Devolution Depression is ruining your life - not stretchy skin. Concentrate on fixing you mental health is my advice. 

Finally I apologise to all 3 of you for how aggressive I might seem. I’m really not and I’m not trying to upset anyone.




 

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Posted (edited)
On 7/20/2018 at 9:14 PM, Benjamin94 said:

 

Removed by author.

Edited by Deleted Account

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Posted

Benjamin 94

I’m not even prepared to accept eye floaters which I’ve had for over 15 years, that to me is unacceptable and I did not sign up for them when I took Accutane 

I know many others on this forum have them too, people who are 20 years younger than me, this has nothing to do with age but everything to do with Accutane. As I said, completely unacceptable!!!

I could discuss other stuff too that clearly isn’t age related, I take your point about age related decline but too many of us were inflicted with these issues immediately or not long after taking tane in our 20’s, it’s clear that it robbed us of our health....all of this is unacceptable in my book.

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Posted (edited)
On 7/21/2018 at 1:33 AM, TrueJustice said:

 

 

Removed by author.

Edited by Devolution

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Posted

We knew the side effects and all risks when we chose to take this medication liver damage eye damage it’s all in the leaflet we as human beings are responsible for our own actions and choices.yes we all have bad side effects but we knew the risks and didn’t even stop and think.same as propicia it now comes with a warning on the box that says may cause permanent sexual des function and guys are still taking the stuff it will never be taken of the market no one forced it down our throats it was our choice to take it I made a bad choice 

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Posted

You’re right, it ultimately was our choice to take it.

Bad combination really, when you’re young you feel bulletproof thinking “these side effects will never happen to me” or “I’ll be right once I stop taking it” WRONG!!

You also trust the guidance of the doctor prescribing it yeah, you think to yourself this’ll be safe, they wouldn’t put me on anything that’s harmful.....Ahh the benefit of hindsight ha ha.

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Posted (edited)

(sorry for all the mistakes if there are any, english isn't my native language)
Hi, long time lurker here.

So I've  been following this thread for good 2 years, after I finished accutane in 2016. My cumulative dosage was very very high, maybe around 250mg/kg. I had no serious side effects for like 80% of the course, but in the last 2 months I developed depression and diffuse hairloss (literally from all over the body, armpits, public area, head)  which lasts to this day. My skin on my face also looks very thin and dehydrated. After reading like 500 pages of this topic, I still don't understand how this drug causes it's side effects. You talk about  5ar inhibiton, and erectile disfunction, but this did not happen to me. I would say the opposite, I would say that my libido is even better after my course, to the point it becomes troublesome. I lost 50% of my hair on my head, my face aged like 10 years, my skin is also still very very dry and I am a little bit depressed (but I am pretty sure that my depression is because of my low self-esteem this drug caused, by aging me and making me lose my hair etc). I spent a lot of time researching this drug and I might have few ideas about it's mechanics but I've never really wrote it down so it's kinda hard for me to share all of my ideas and informations I gathered. So far, I ask myself, why do I not suffer from erctile dysfunction/loss of libido, after taking like 20000mg of this drug, and some people took like 10% of my dosage or less, and are crippled for life?
 

Edited by Kunus999

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Posted (edited)

- Edited by childofsungod

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Posted

UCLA scientists identify a new way to activate stem cells to make hair grow

Mirabai Vogt-James | August 14, 2017
http://newsroom.ucla.edu/releases/ucla-scientists-identify-a-new-way-to-activate-stem-cells-to-make-hair-grow


In this study, Christofk and Lowry, of Eli and Edythe Broad Center of Regenerative Medicine and Stem Cell Research at UCLA, found that hair follicle stem cell metabolism is different from other cells of the skin. Cellular metabolism involves the breakdown of the nutrients needed for cells to divide, make energy and respond to their environment. The process of metabolism uses enzymes that alter these nutrients to produce “metabolites.” As hair follicle stem cells consume the nutrient glucose — a form of sugar — from the bloodstream, they process the glucose to eventually produce a metabolite called pyruvate. The cells then can either send pyruvate to their mitochondria — the part of the cell that creates energy — or can convert pyruvate into another metabolite called lactate.

The research team first blocked the production of lactate genetically in mice and showed that this prevented hair follicle stem cell activation. Conversely, in collaboration with the Rutter lab at University of Utah, they increased lactate production genetically in the mice and this accelerated hair follicle stem cell activation, increasing the hair cycle.

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