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Posted (edited)
On 7/21/2018 at 5:03 PM, guitarman01 said:

 

Removed by author.

Edited by Deleted Account

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Posted
1 hour ago, Devolution said:

That could be useful for me and anyone else whos lost, or who's hair has thinned from this, we do need to fix the underlying issue but if it doesn't grow back naturally, stem cells definitely look promising.

91365727-5AAA-4E0E-9CA9-47B922F053B2.thumb.png.f8354802ccac96d5e4dc80f501b14b27.png

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Posted

Accutane turned off antioxidant defenses by downregulating the NRF2 pathway.  The downstream effects of this are catastrophic.

I imagine the "cure" lies in reactivating this antioxidant pathway and keeping it on long enough for the body to catch up and heal..

Like jump starting your car battery..

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Posted

One of the tests that ever tested low was thyroglobulin (and testosterone/estradiol).  Found this related to NRF2.

https://www.ncbi.nlm.nih.gov/m/pubmed/29742982/
 

Quote
The study shows that Nrf2 mediates antioxidant transcriptional responses in thyroid cells and protects the thyroid from oxidation induced by iodide overload. Surprisingly, it was also found that Nrf2 has a dramatic impact on both the basal abundance and the thyrotropin-inducible intrathyroidal abundance of thyroglobulin (Tg), the precursor protein of thyroid hormones. 

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Posted
6 hours ago, guitarman01 said:

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.


Any other research about increasing oil production like this?

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Posted (edited)
10 hours ago, MonsterDiesel said:

Accutane turned off antioxidant defenses by downregulating the NRF2 pathway.  The downstream effects of this are catastrophic.

I imagine the "cure" lies in reactivating this antioxidant pathway and keeping it on long enough for the body to catch up and heal..

Like jump starting your car battery..


Not according to some on this forum, they’d have you believe most issues are simply due to the natural ageing process...wow.

Astounding I know!!!

If what you’re saying here is true, it’s a good find so thank you!! Edited by TrueJustice

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Posted
On 7/20/2018 at 3:11 AM, 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 this first message on this thread - 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!

http://www.vigiaccess.org/

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Posted (edited)
On 7/20/2018 at 11:26 PM, Devolution said:

You don't know anything about my situation unfortunately, please don't tell me what you think is ruining my life, i know what's wrong and im done explaining myself, you clearly don't understand. Thanks.
Benjamin is currently week 13 taking accutane but he is an expert apparently! Do you think he knows that even the authorities accept that many of the serous side effects of accutane occur after you stop the medication.
I really do wish him the best as no one deserves PAS but he should save his opinions for after his treatment. Edited by hatetane

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Posted

Everyone call this week - You may report side effects to FDA at 1-800-FDA-1088

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Posted

Hello everyone, I'm 18 years old and I have a low libido and bad erections for 3 months.

I stopped Accutane after a month with these symptoms under the guidance of my doctor. He had never heard of this and he reported it to the proper authorities. I have not seen him since but I still have these problems. Sometimes the libido comes back a few days but the erections are never 100%. I do not understand all your messages and scientific theories that you post but it scares me to be honest. You advise me to do what? I have to see who? Do I have behaviors to adopt to try to come back? Please tell me it's not definitive.

I'm French, I do not speak English, sorry if it's not clear. In French there is nothing on the subject so I try to understand you here.

Help me please

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Posted
On 7/23/2018 at 8:39 PM, MonsterDiesel said:

Everyone call this week - You may report side effects to FDA at 1-800-FDA-1088

Thanks Diesel - everyone should report.
See my posts for european email addresses to report to.

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Posted

Just curious to find out if anyone of you folks had taken an antibiotic before or after accutane/isotretinoin. I'm curious to see if there was a correlation or regardless of taking an antibiotic like doxycycline it would of have a more adverse reaction. I know of a few cases so far. 

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Posted

Hello All!

A journalist is looking forward to interviewing those suffering from post-Accutane sexual and/or gastrointestinal side-effects. Those who are interviewed may maintain their anonymity if they wish.

More information on www.propeciahelp.com:

Quote

Independent writer Louisa Cavell is right now seeking contact from Accutane users who suffer persistent side effects. If you are affected by the lasting or post-drug effects of Accutane, you can get in contact with Louisa by reaching out to louisa.cavell@city.ac.uk.


Please contact Louisa when you get a chance. This is a great opportunity to put a spotlight on these problems so we don't have to wallow in shadows of disbelief for the rest of our lives.


Also, any sufferers of Ro/Accutane sexual side effects residing in the UK, please PM me regarding a similar potential interview.

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Posted
@Dubya_B I did reach out to her, she did not respond unfortunately.  

 

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Posted
On 7/21/2018 at 5:18 PM, Devolution said:

That could be useful for me and anyone else whos lost, or who's hair has thinned from this, we do need to fix the underlying issue but if it doesn't grow back naturally, stem cells definitely look promising.
I was thinking of having a 'stem cell facial' - to try and cure the dry, damaged skin. Only thing stopping me is that I was quoted up to £5,000 here in the UK. 

At this point I feel like it would be the only thing that could possibly heal my skin. 

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Posted
3 hours ago, Justdry said:
I was thinking of having a 'stem cell facial' - to try and cure the dry, damaged skin. Only thing stopping me is that I was quoted up to £5,000 here in the UK. 

At this point I feel like it would be the only thing that could possibly heal my skin. 

I gather you’ve tried products like Baxyl but they haven’t increased the moisture?

I had no real issues with dryness whilst on Accutane 20 years ago, my overall dryness now though especially with the face is horrendous!!

I’ve got no sebaceous glands, I sweat like no ones business, in summer it just pours out of me I hate to say....

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Posted
53 minutes ago, TrueJustice said:

I gather you’ve tried products like Baxyl but they haven’t increased the moisture?

I had no real issues with dryness whilst on Accutane 20 years ago, my overall dryness now though especially with the face is horrendous!!

I’ve got no sebaceous glands, I sweat like no ones business, in summer it just pours out of me I hate to say....


Very interesting..I barely sweat at all compared to pre tane. 

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Posted
Hi everyone,

It's the first time I write here, but I've read most of the first pages and posts in this forum. I feel for every difficultness you've been through as I've had a share of mine too, but I don't quite relate to any case I've read here. I don't have any solution, but I would like to share with you my experience with Roacutan (name given at that time in Spain) and see if somebody feels related to my case in some way after taking these pills many years ago.

I started having a strong bad ass acne in my 16-17's (we are talking about the late 80's here cause I'm 45 right now..., yes it's been a long time since then) and at that moment I tried all kinds of treatment, medicines, creams, even injecting medicine directly in each pimple. It was all done by dermatologists from Panama (I was born there) and it was painful. All of that didn't work and it only got my skin more irritated. 

When I was 19, I went to Spain and started taking birth control pills (Diane35 was popular at that time) and it lowered a lot my acne production and I guess getting out of my puberty helped also. At my 20's I only had some two or three pimples coming out specially when having my period, but the dark spots on pores would mantain and therfore, the dilatation of pores through out my face, as well as redness and one could feel a rough sensation of the skin (only on my face) when touching it. 

At my 26's I was sick and tired of having this situation, so I went to see a dermatologist in Spain who told me that new advances had been made in terms of acne problems and that a medicine had finally turned out to cure acne totally. He explained that it worked from inside, it stopped the production of sebum that our body generated which poduced acne. He didn't explain any side effects, nor short or long. He only said I couldn't get pregnant while taking it and after finishing the treatment I should wait a few months and never ever put any oily product on my skin. He did ask me to do some blood analysis while taking it.

I read all the side effects on the prospect and if I remember well, I took the normal dosage for only 3 months since at that time my acne was very mild. 

During my intake, I went through the typical side effects like redness, tightness of the skin, even peeling and dried lips. I didn't experience any problems with my eyes, depression or hair loss. What I did notice was that when I finished my treatment my skin was incredibly fine, my pores had closed, all the black pore spots were gone and my skin felt smoother and softer. I was realy happy. I thought I had done the best thing taking those pills. However, after some months later, I experienced something strange. I starded to feel pain in my joints, back and knees. When I had to pick up something from the floor or get up from a chair I felt like rusted or like an 80 year old woman and I was only 26 at that time. I started to get worried, so I did some medical check ups. I went to a rheumatologist and made some blood tests and xrays of my back bone, but they didn't find any anomaly. With time (few weeks) this general body pain stopped. So I didn't give it more importance. 

Years went by, I had my son at 33, healthy and beautiful so no problem there although I did have a natural misscarage in the second month of the first time I got pregnant at 32, but that is something that unfortunately happens to many women during their first pregnancy.

The thing is that at my 40's I started having those joint pains again. They started very mild and with the years they've become stronger. What I feel is a rustiness when getting up or pick up anything, I can't be laying down in bed while sleeping for more than 7 hours because I start to feel pain in my back and hips. When I get up, I feel pain in my soles during my first steps, but the pain stops when walking a little bit more as well as the pain in my back and hips. The pain is not the same every day. There are some days I don' realy feel it. I do exercise regulary (cardio, streching, pilates) 2 hours, 4 days a week. It doesn't help. I don't have any problem gaining weight as I've read some people have, on the contrary, I've been gaining a lot of weight this last year and a half (although I've always been very thin, but it feels as my metabolism has chaged) and the work out I do doesn't change that. I used to play padle regulary (is a sort of double tennis using walls. It is played mostly in some parts of Europe and South America), but I had to quit three years ago due to a sudden tendonitis in my right shoulder and elbow. My diet is normal, I don't do any special diet, but I always try to eat healthy and it's not so difficult since I live in Spain were you normally follow a home made mediterranean diet which is quite healthy if you put aside all the not so healthy stuff. 

I've been to a lot of doctors and done a lot of check ups including rheumatoligist (once again) and they don't find anything wrong in my blood tests or ultrasounds. They say my thyroid is ok as well as my hormones and no rheumatism factor in my blood tests. The only thing that comes up is a high cholesterol, but I've had it for years and it runs in the family. Also lack of vitamin D during the winter time because of low sun exposure, but changes to normal after taking some liquid vitamin D suplements and during summer time my vitamin D is totally normal again, so it's a case of low sun exposure. 

Since they don't find anything, the rheumatologist sais it might be my body getting started to menopause... come on! I'm 45 still and have my period regulary every month and I can't stop thinking it might have something to do with my Roacutan intake since it's very similar as to the temporary pain I experienced at that time after taking those pills. 

The thing is that I don't know if somebody experienced something like this after so many years of having taken Roacutan. I haven't read any case which is similar and I'm not sure my problem is realy caused by it, but if it's not, then Roacutan did help me and was the best thing ever for me, but I guess I'll never know for sure. I used to think it was the best thing and that I would even give it to my son if he would ever need it in the future since he's now 13 years old and spare him from all the pain I had to go through with other treatments while being a teenager, but now with this happening to me, I doubt I would recomend it to anyone.





 

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Posted
On 7/25/2018 at 12:58 PM, TrueJustice said:

I gather you’ve tried products like Baxyl but they haven’t increased the moisture?

I had no real issues with dryness whilst on Accutane 20 years ago, my overall dryness now though especially with the face is horrendous!!

I’ve got no sebaceous glands, I sweat like no ones business, in summer it just pours out of me I hate to say....
Never heard of Baxyl. What is it? 

I've actually been using a barrier repair cream day and night for 4 or 5 months now and it keeps it well hydrated and you wouldn't really know it's still dry unless you're me and live in it, however, the damage the extreme dryness has left behind isn't healing at all which is why i'd love the stem cell treatment. 

Lines, redness, large pores, all caused by leaving it so dry for so many years. 

I've just ordered some 10% glycolic acid to test for a few months to see if the constant exfoliation can help with this. From my research it sounds like something that would really help me in the long term.  I definitely won't be trying anything above 10% or having a peel done, I think that would do more harm to my skin than good. 

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Posted
On 7/25/2018 at 3:56 AM, Biggest Brother said:
@Dubya_B I did reach out to her, she did not respond unfortunately.  

 
Sorry to hear that. I have not received a reply from her either. A good friend was speaking with her on a regular basis for awhile regarding these interviews and she sounded eager to correspond with us. I will try to ask him what's up. She might simply be on vacation at the moment.

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Posted

As a group, what story that hasn’t already been published about Accutane would we like to present?

completely pointless doing another “dying for clear skin” story, it’s already been done yeah!!

I’m keen to know even from a journalist point of view what new story should be presented in 2018?

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Posted

These journalists are interested specifically in sexual side effects from Accutane. There is one brief mention of this in the Dying for Clear Skin documentary. Do you think that is sufficient warning to those considering the drug or those just beginning to experience sexual side effects?

What story regarding detrimental effects of Accutane doesn't deserve to be published?

Are depression and suicides related to the drug not as pertinent in 2018 as they have been in the past 3 decades?

This is about public awareness and will go to show that stories similar to ours are more than just a passing fad of hysteria.
 

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Posted

Well that’s good, you’ve got your thinking cap on, that’s the sort of stuff I’d be saying to this journalist because if she hasn’t done her homework and doesn’t know that stories have already been written about the dangers of Accutane then it will make for a pointless story, you and I know plenty has been written but does she??

If I got the chance to talk to her, I’d discuss that stories have been done before, and here we are years later still going over the same subject matter. People reading about Accutane for the first time would then understand it’s been going on for decades, that suffering continues- that’s the angle I’d be putting across!!

Of course all stories need to be written about Accutane, I just want her to know that hey, here we are still sitting in the corner with our hands up saying we need help over here, that “Dying for clear skin” article was written 6 years ago now and still we have no one helping us - vital that this info gets expressed if she does write something otherwise again we’ll of moved nowhere from where the last article left off yeah....

The headline should be something like “Accutane survivors still waiting for help” 
that might prompt someone in the medical community to pull their finger out and actually do something!!

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Posted

Fair enough.

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Posted (edited)

Beta-alanine = dry eye relief?

Started using beta-alanine and noticed that my eyes have tears.  They are the wettest they've ever been.  So much that havent used drops.  Nose didnt feel dry either and wasnt bleeding this morning.  Not sure the mechanism but it seems to be working.  Taking 1 tablet of the gnc brand a day.

Edited by MonsterDiesel

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