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Repairing the long-term damage from Accutane

 
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397
(@calcified)

Posted : 01/16/2019 1:02 pm

1 hour ago, Francisco..Blanquez said:

I got psoriasis a year or so after having roacutane (I even was not sure it was because of that "medicine") then psoriasis went though the nails into some knuckles... causing arthritis... in some of them the bones are already joined, there is no knuckles now. Anyway I also got in a knee, elbows which fortunately went away . It was begining in my spine as well but fortunately the all have stoped now that I dont eat gluten and sugar

Avoiding carbohydrates does raise cortisol, so makes sense, there has to be a cortisol connection. Cortisol suppresses inflammation. Anyone else agree or disagree? Happy to be proved wrong.

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0
(@Anonymous)

Posted : 01/16/2019 3:32 pm

23 hours ago, VanceAstro said:

I do. It's called fat malabsorbtion. This was the first side-effect that I've noticed after starting low-dose accutane. Basically, the more fat I consumed the more often I had to visit the toilet. Later on I also found out that I can't tolerate/digest certain fruits(apples for example).

I have never had these problems prior to taking Accutane.

 

 

 

Same

I'm having problems with fruits as well!

I think digestive enzymes will help with the fat malabsorbtion.

Coffee gives me chest pains and makes me tired. Like I'll crash for an entire day.

20 hours ago, guitarman01 said:

retinoic acid metabolism,

animal fat metabolism

sugar/glucose metabolism

wheat/gluten metabolism

dairy/ milk metabolism

cholesterol metabolism

protein/ sulfur metabolism

pick one.

@VanceAstro

There's another recent study very similar to that one I posted. So similar I wonder if its the same authors or not. I'll have to see if I can find it again when I get a chance.

it goes on about hypothesizing Accutane's permanent effects and the problems that could arise.

I believe they basically thought Accutane's long term effects could be attributed to permanent changes in immunity or outgrowing acne after treatment. Well we know its not the later. We didnt outgrow side effects.

 

pretty good paragraph from that study.

Again, remember this.

In addition, isotretinoin normalizes [58,59] exaggerated TLR-2- mediated responses in acne patients [60,61]. Since TLR2 plays many positive physiological roles, deleterious consequences of its blockade are expected. TLR2 regulates the production of neurotrophic factors in intestinal smooth muscle cells and promotes survival of enteric neurons and glial cells [62,63]. TLR2 controls mucosal renewal. Cells kinetics of villous columnar epithelial cells are modulated by TLR2 and controls the proliferation of indigenous bacteria [64-66]. TLR2 enables local tolerance via Bacteroides fragilis. It discriminates between pathogens and symbiotic bacterial molecules in a process that engenders commensal beneficial colonization [67,68]. TLR2 controls indigenous bacteria proliferation in the upper alimentary tract. Lack of TLR-2 contribute to the settlement of undesirable bacteria, especially Gram-positive, or candida [69,66,70,4].

 

I think maybe you managed to change something that is normally very resistant to change. But found something that could do it.

 

16 hours ago, gutskinaxis said:

Could've been a coincidence, but I really didn't eat much today and was drinking green tea with just a pinch of sugar throughout the day and I felt great, for anyone suffering from fatigue at all

Guys could it be that our bodies had problems digesting these toxic foods before tane and that caused our acne. And now tane just made it worse and now we have to avoid these foods anyway.

2 hours ago, Calcified said:

Avoiding carbohydrates does raise cortisol, so makes sense, there has to be a cortisol connection. Cortisol suppresses inflammation. Anyone else agree or disagree? Happy to be proved wrong.

I agree

A woman managed to heal by going on a paleo diet. But her cortisol levels were high because she wasn't getting enough carbs. I think the same thing happened to me

11 hours ago, Justdry said:

For the past few years I've just had the severely dry skin, however, the past 2 years I developed anxiety and feel tense 90% of the time, affecting my sleep the past few months. I don't know if this is down to accutane or just the stresses of life and becoming a father. I can't really blame everything that happens to me on accutane, people who never touched the stuff are worse of mentally than I am. Half of my anxiety is due to the condition of my skin, it's hard to face people every day and live a normal life.

I feel your pain man I also developed anxiety recently.

I have hope that we'll all get through this and heal.

4 hours ago, Chris16 said:

I recently did a 4 day fast and felt really good after it. I seem to react way better to foods after it. I believe its helping to repair immune system and gut. Im going to do another 4 day fast again soon.

Read Charles133 post that I posted like a page or 2 back.

I also react better to foods after a fast.

23 hours ago, TrueJustice said:

Vance Astro - Do you have many of the other common issues - eye floaters, no moisture in skin, thinning hair??

Trying to figure out how these might arise due to fat malabsorption, if theres a connection?

I have the eye floaters and no moisture

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MemberMember
9
(@chris16)

Posted : 01/16/2019 4:14 pm

42 minutes ago, Gatu77777 said:

Same

I'm having problems with fruits as well!

I think digestive enzymes will help with the fat malabsorbtion.

Coffee gives me chest pains and makes me tired. Like I'll crash for an entire day.

Guys could it be that our bodies had problems digesting these toxic foods before tane and that caused our acne. And now tane just made it worse and now we have to avoid these foods anyway.

I agree

A woman managed to heal by going on a paleo diet. But her cortisol levels were high because she wasn't getting enough carbs. I think the same thing happened to me

I feel your pain man I also developed anxiety recently.

I have hope that we'll all get through this and heal.

I also react better to foods after a fast.

I have the eye floaters and no moisture

How long of fasts have you done? Like a 24 hour?

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(@guitarman01)

Posted : 01/16/2019 7:07 pm

A couple observations.

I think the anxiety, facial flushing is a type of gastric motility problem. You could also put this in the realm of alternating constipation/IBS

This could be somewhat symptom free as well, meaning you might not be aware

Ive seen the studies. Skin hypersensitivity, neurologic symptoms due to impaired gastric motility.

 

I think the eye problems also involve the muscles around the eye.

All these muscles also push blood flow or circulation, and of course these smooth muscles just like mentioned in the study,are everywhere.

 

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MemberMember
1753
(@truejustice)

Posted : 01/16/2019 7:19 pm

I personally think theres a massive oxidationissue at play - premature greying of hair, varicose & spidarveins and the eye floaters...

Thats why many previous postinghas talked about CoQ10 supplementfor example. Its not a cure but its a good one to take, esp of our hearts are susceptible after Tane?? God only knows if this is also an issue - againblood flow issues!!??

ACCUiTy wherever he is these days was big on the antioxidants, even mentioned PQQ at some point. I need to look at what thats all about.

Quote
MemberMember
17
(@gutskinaxis)

Posted : 01/16/2019 7:47 pm

4 hours ago, Gatu77777 said:

Same

I'm having problems with fruits as well!

I think digestive enzymes will help with the fat malabsorbtion.

Coffee gives me chest pains and makes me tired. Like I'll crash for an entire day.

 

That's very interesting. I've felt amazing after eliminating coffee from my diet and drinking green tea instead. It's only been a few days so could be placebo but hm. I'll keep everyone updated.

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MemberMember
19
(@justdry)

Posted : 01/17/2019 4:30 am

9 hours ago, guitarman01 said:

A couple observations.

I think the anxiety, facial flushing is a type of gastric motility problem. You could also put this in the realm of alternating constipation/IBS

This could be somewhat symptom free as well, meaning you might not be aware

Ive seen the studies. Skin hypersensitivity, neurologic symptoms due to impaired gastric motility.

 

I think the eye problems also involve the muscles around the eye.

All these muscles also push blood flow or circulation, and of course these smooth muscles just like mentioned in the study,are everywhere.

 

Nah, my skin would absolutely fall under the 'hypersensitive' category but my digestion has always been absolutely fine. Never have IBS or constipation and I pass healthy stools at around the same time every morning, my digestion is like clockwork.

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MemberMember
6
(@mabbbs)

Posted : 01/17/2019 7:03 am

On 1/8/2019 at 5:17 AM, Calcified said:

My cortisol was always low, Prednisone is cortisol, just bumps it up a bit and I haven't taken it for long periods. Had MRI and it was totally normal. Hope B12 will increase my cortisol awakening response. Did you get a diagnosis after all your tests?

Totally agree. I did read once that dermatologists stated that people with long term problems after treatment probably had sapho syndrome prior to treatment and that treatment could make it worse. I am curious if this is relatable to yourself or anyone else?

Sorry for the late reply, my cortisol was suppressed after the dexamthensone test, and my brain MRI was normal. The next step is to conduct an MRI for the pituitary gland or adrenal gland depending on the doctor Ill be seeing next week. Until then, Id been sidetracked with other blood tests; Ive tested for Vitamin A, since well Accutane is derived from vitamin A but as expected it back negative alongside my liver function.H Pyolri Bacterial infection from my stool test came back positive ( I did a lot ofbacterial tests in the past such as the urine culture testbut they all came back nagative). My peripheral blood smear test is pointing towards a viral infection as I had a rash all over my body five months ago that went away after two months. All my other infectious and rheumatology related results were normal. Im also gonna look into growth hormone when I meet my endocrinologist next week,as this is one hormone I did not test for but suspecting to be abnormal because I took Accutane during my teenage years and read that it stunts growth. GH obviously causes more problems than just stunted growth, which is why I want to check it.

 

Ive been on a gluten free diet for the past 5.5 months,which helped notfeel fatigued after eating anymore (as I developed gluten intolerance after Tane). Im going organic as much as possible and what really helped me with fatigue and dizziness in the morning is dates, honey, and black seeds. I really really recommend it as it keeps me sharp and concentrated during the day. I used to not eat breakfast at all because food made me tired but this was a life changer. I also stopped getting sick (cold and flu) ever since I started eating those in the morning. A few days ago, I tried taking omega 3 in the morning and magnesium at night but had terrible side effects, namely convulsion and feeling like Im being electroshocked. One thing for sure, Im steering clear of vitamin supplements. I also took digestive enzymes which didnt have any effect as well as Chinese herbs. Someone recommended me LDN post-Tane which helped him eleminate fibromalygia, joint pain, and allergies. The problem is, I cant find a doctor wholl prescribe it, and even if they do, theres a problem with the reliability of compounding pharmacies. There are very few reliable compounding pharmacies as you might not get avery effective LDN. I know theyre online but I cant trust those either as they could be fake or in slow-released form. Anyone here had success with finding LDN thats trustworthy? For now, Im gonna try the water fast and ginger root tea for the liver detox, and prebiotics (I had success with one brand)+ probiotics.

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(@Anonymous)

Posted : 01/17/2019 7:04 am

14 hours ago, Chris16 said:

How long of fasts have you done? Like a 24 hour?

16 hour fast then my body starts recovering but I get hungry and have to eat

Quote
MemberMember
0
(@abi72)

Posted : 01/17/2019 7:54 am

11 hours ago, TrueJustice said:

I personally think theres a massive oxidationissue at play - premature greying of hair, varicose & spidarveins and the eye floaters...

Thats why many previous postinghas talked about CoQ10 supplementfor example. Its not a cure but its a good one to take, esp of our hearts are susceptible after Tane?? God only knows if this is also an issue - againblood flow issues!!??

ACCUiTy wherever he is these days was big on the antioxidants, even mentioned PQQ at some point. I need to look at what thats all about.

I spoke to ACCUiTy last week so at least we know he is still alive. He has a new job and other things going on his his life but he certainly is not cured.

 

I have seen some wishful thinking that when people disappear from this forum that theymight have healed but anyone who has been on this forum knows the hell of PAS/PRSD and I would like to think that anyone who got cured would be sure to share the news and offer advice.

Indigo is not cured and nor is Crank.

The guy who made the film Dying for Clear skin is campaigning to raise awareness - don't know if any of you knewthis. He has an important meeting coming up and what he would like is a paragraph form as may people as possible stating your opinion about the drug maybe saying how it affected you or whatever. If you want to help him you can email me and I will forward it or post here here and I can copy and paste.pleaseadd your username and say in brackets (permission to share). I am sure you can all emphasise with Derek and appreciate his efforts, a little support goes a long way.

Derek is not in a position to advise anyone because he has not looked for cures (you probably all know he lost his much loved son to Roaccutane) but he is not adverse to talking to sufferers as long as he in not inundated - so I am happy to pass messages on to him and he may get back to you.

MHRA have told me that they will not be reviewing sexual sides untilthey have more evidence. - that means until more people report their side effects.

So at the moment the only warning in the PIL is erectile dysfunction and lowlibido and it says that all side effects usually go away once the medicineis stopped.

Do you all think that this is ok and that this drug will be given to up to 30,000 unsuspecting young peopleyearly in the UK alone?Only 49 people have ever reported erectile dysfunction in the UK and clearly MHRA don't think these numbers are significant to warrantchange! Does this not make you angry? I believe it is possible that these particular side effects could effect as many as 30%, as incredibly as that sounds. Reportedly 6/18 men in the originaltrials reported erectile dysfunction. I know of two boys that took accutane at one school and both of them now suffer from sexual dysfunction. One boy I spoke to said that he personally knew 3 other males who took accutane and 3 of them suffered from serious side effects so what does this suggest?

Also Rxisk who are doing so much for you guys in terms of trying to raise awareness and find a cure contacted every accutane victimwho previously emailed them and asked them to report their side effects to EMA and only 3 did so. They also asked lots of Doctors if they would raise red flags and not a single one bothered to do so!!

How many people have supported the Citizens Petition - only 20 or so. How can we expect changes if no one does anything and can't even be bothered to report their side effects. I know you are all sick of hearing me say this but do you really think I am wrong?

Can we all just pull together - we are not just looking to raise awareness we are trying to get research initiated and funded. We want to see victims compensated and supported when they reach out for help.

 

I hope I get some positive responses because trust me, unless we get victims reporting and at least some coming forward like ED, there will be not point in those of us who are campaigning, continuing to do so.

I will post all reporting linksagain throughout the day - if anyone want to discuss anything please get back to me.

 

As David Healy, a professor of psychiatry at Bangor University, who is studying the impact of isotretinoin, explains: Erectile dysfunction is psychologically devastating to young men and, without doubt, does lead to suicide.

There is almost certainly a link between sexual dysfunction and suicide in men, says Professor Healy.

Last month RxISK, an independent drug safety group based in Canada, called on the U.S. drug regulator to add a boxed warning to packets of isotretinoin to inform patients that sexual side-effects can sometimes persist indefinitely after discontinuation of the drug; they can emerge on treatment and remain afterwards, or emerge or worsen when the drug is stopped.

This petition is asking for better warnings but we need people to comment that the drug is unsafe and should not be given to kids etc - possibly an outright ban or it's use should be greatly reduced. People should put their strong views across.

 

 

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(@Anonymous)

Posted : 01/17/2019 8:11 am

The people who heal are the ones going on diets.

This is the 4th person that I know of that has healed this way..

HiguysI feel like I needed to make this post to help others bc I know Im not the only 1 who has suffered after taking Accutane. I suffered beyond belief after being on it for6 months. I felt like my life was over. My hair had fallen out, Iwas clinically depressed, suicidal, I was sobbing & breakingdown every day, could no longer eat certain foods,back pain, low libido. It was absolutely crazy & I knewsomething was NOT RIGHT. I went on like this for a year bc noneof my doctors could help me... they were just puzzled. So I did my own research. (Btw I now feel amazing) 1st of all Accutane DESTROYSyour Digestive system & obviously ur mood & well-being & health all begin in your gut. So 1st things 1st you NEED to repair your gut & the way your body digests food.If you dont your body isnt absorbing certain vitamins thatyou NEED for health & getting better !! After Accutane any time I ate anything w fat: Example... olive oil, coconut milk, nuts, etc. my stomach KILLED. Accutane leaves ur body without the ability to break down fat & therefore its just getting passed right into ur stool. You need to take a digestive enzyme to HELP your body break down the fat so ur body can ABSORB it. So Imgonna list what you MUST consider doing in order to feel better:

 


1. Digestive Enzymes (its a vitamin & canbe found in any health store... get a potent one.)
2. Strong Probiotics (helps heal ur gut immensely!!! I use Vibrant Flora Probiotics 100 Billion)
3. Takinggluten,sugar, &dairyfrom ur diet (which was SO hard to do for me but those 3 things r so taxing on ur Digestive system as it is you literally cannot consome those things in order to heal your gut.)
4. Milk Thistle (for your liver bc Accutane is also so hard on ur liver & in order to rid urself of toxins you need to give ur liver some love)

Thats it peeps !! This is what worked 4 me & made me feel back to my old self & healthy again . Thank you for taking the time 2 read. Your health is everything !!! <3

~K8

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MemberMember
9
(@chris16)

Posted : 01/17/2019 9:20 am

1 hour ago, Gatu77777 said:

The people who heal are the ones going on diets.

This is the 4th person that I know of that has healed this way..

HiguysI feel like I needed to make this post to help others bc I know Im not the only 1 who has suffered after taking Accutane. I suffered beyond belief after being on it for6 months. I felt like my life was over. My hair had fallen out, Iwas clinically depressed, suicidal, I was sobbing & breakingdown every day, could no longer eat certain foods,back pain, low libido. It was absolutely crazy & I knewsomething was NOT RIGHT. I went on like this for a year bc noneof my doctors could help me... they were just puzzled. So I did my own research. (Btw I now feel amazing) 1st of all Accutane DESTROYSyour Digestive system & obviously ur mood & well-being & health all begin in your gut. So 1st things 1st you NEED to repair your gut & the way your body digests food.If you dont your body isnt absorbing certain vitamins thatyou NEED for health & getting better !! After Accutane any time I ate anything w fat: Example... olive oil, coconut milk, nuts, etc. my stomach KILLED. Accutane leaves ur body without the ability to break down fat & therefore its just getting passed right into ur stool. You need to take a digestive enzyme to HELP your body break down the fat so ur body can ABSORB it. So Imgonna list what you MUST consider doing in order to feel better:

 


1. Digestive Enzymes (its a vitamin & canbe found in any health store... get a potent one.)
2. Strong Probiotics (helps heal ur gut immensely!!! I use Vibrant Flora Probiotics 100 Billion)
3. Takinggluten,sugar, &dairyfrom ur diet (which was SO hard to do for me but those 3 things r so taxing on ur Digestive system as it is you literally cannot consome those things in order to heal your gut.)
4. Milk Thistle (for your liver bc Accutane is also so hard on ur liver & in order to rid urself of toxins you need to give ur liver some love)

Thats it peeps !! This is what worked 4 me & made me feel back to my old self & healthy again . Thank you for taking the time 2 read. Your health is everything !!! <3

~K8

Where did this post come from? Are you able to ask him additional questions on his diet?

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0
(@Anonymous)

Posted : 01/17/2019 9:37 am

15 minutes ago, Chris16 said:

Where did this post come from? Are you able to ask him additional questions on his diet?

I messaged but got no reply. This person hasn't been online since February last year

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MemberMember
9
(@chris16)

Posted : 01/17/2019 9:45 am

Okay, good to see another poston diet being the answer.

Thanks for sharing!

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MemberMember
397
(@calcified)

Posted : 01/17/2019 9:56 am

2 hours ago, Mabbbs said:

Sorry for the late reply, my cortisol was suppressed after the dexamthensone test, and my brain MRI was normal. The next step is to conduct an MRI for the pituitary gland or adrenal gland depending on the doctor Ill be seeing next week. Until then, Id been sidetracked with other blood tests; Ive tested for Vitamin A, since well Accutane is derived from vitamin A but as expected it back negative alongside my liver function.H Pyolri Bacterial infection from my stool test came back positive ( I did a lot ofbacterial tests in the past such as the urine culture testbut they all came back nagative). My peripheral blood smear test is pointing towards a viral infection as I had a rash all over my body five months ago that went away after two months. All my other infectious and rheumatology related results were normal. Im also gonna look into growth hormone when I meet my endocrinologist next week,as this is one hormone I did not test for but suspecting to be abnormal because I took Accutane during my teenage years and read that it stunts growth. GH obviously causes more problems than just stunted growth, which is why I want to check it.

 

Ive been on a gluten free diet for the past 5.5 months,which helped notfeel fatigued after eating anymore (as I developed gluten intolerance after Tane). Im going organic as much as possible and what really helped me with fatigue and dizziness in the morning is dates, honey, and black seeds. I really really recommend it as it keeps me sharp and concentrated during the day. I used to not eat breakfast at all because food made me tired but this was a life changer. I also stopped getting sick (cold and flu) ever since I started eating those in the morning. A few days ago, I tried taking omega 3 in the morning and magnesium at night but had terrible side effects, namely convulsion and feeling like Im being electroshocked. One thing for sure, Im steering clear of vitamin supplements. I also took digestive enzymes which didnt have any effect as well as Chinese herbs. Someone recommended me LDN post-Tane which helped him eleminate fibromalygia, joint pain, and allergies. The problem is, I cant find a doctor wholl prescribe it, and even if they do, theres a problem with the reliability of compounding pharmacies. There are very few reliable compounding pharmacies as you might not get avery effective LDN. I know theyre online but I cant trust those either as they could be fake or in slow-released form. Anyone here had success with finding LDN thats trustworthy? For now, Im gonna try the water fast and ginger root tea for the liver detox, and prebiotics (I had success with one brand)+ probiotics.

You mentioned you had 24hr urine cortisol tested was that result higher than 9am serum blood test?

I too get huge rashes.

Quote
MemberMember
9
(@chris16)

Posted : 01/17/2019 11:08 am

4 hours ago, Gatu77777 said:

16 hour fast then my body starts recovering but I get hungry and have to eat

Try to extend it out to 24 or 48 hours.

Quote
0
(@Anonymous)

Posted : 01/17/2019 1:58 pm

2 hours ago, Chris16 said:

Try to extend it out to 24 or 48 hours.

Im planning on doing a 48 hour

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MemberMember
9
(@chris16)

Posted : 01/17/2019 2:17 pm

18 minutes ago, Gatu77777 said:

Im planning on doing a 48 hour

Just push through to 48, youll be glad that you did.

Quote
MemberMember
1753
(@truejustice)

Posted : 01/17/2019 4:04 pm

7 hours ago, hatetane said:

I spoke to ACCUiTy last week so at least we know he is still alive. He has a new job and other things going on his his life but he certainly is not cured.

 

I have seen some wishful thinking that when people disappear from this forum that theymight have healed but anyone who has been on this forum knows the hell of PAS/PRSD and I would like to think that anyone who got cured would be sure to share the news and offer advice.

Indigo is not cured and nor is Crank.

The guy who made the film Dying for Clear skin is campaigning to raise awareness - don't know if any of you knewthis. He has an important meeting coming up and what he would like is a paragraph form as may people as possible stating your opinion about the drug maybe saying how it affected you or whatever. If you want to help him you can email me and I will forward it or post here here and I can copy and paste.pleaseadd your username and say in brackets (permission to share). I am sure you can all emphasise with Derek and appreciate his efforts, a little support goes a long way.

Derek is not in a position to advise anyone because he has not looked for cures (you probably all know he lost his much loved son to Roaccutane) but he is not adverse to talking to sufferers as long as he in not inundated - so I am happy to pass messages on to him and he may get back to you.

MHRA have told me that they will not be reviewing sexual sides untilthey have more evidence. - that means until more people report their side effects.

So at the moment the only warning in the PIL is erectile dysfunction and lowlibido and it says that all side effects usually go away once the medicineis stopped.

Do you all think that this is ok and that this drug will be given to up to 30,000 unsuspecting young peopleyearly in the UK alone?Only 49 people have ever reported erectile dysfunction in the UK and clearly MHRA don't think these numbers are significant to warrantchange! Does this not make you angry? I believe it is possible that these particular side effects could effect as many as 30%, as incredibly as that sounds. Reportedly 6/18 men in the originaltrials reported erectile dysfunction. I know of two boys that took accutane at one school and both of them now suffer from sexual dysfunction. One boy I spoke to said that he personally knew 3 other males who took accutane and 3 of them suffered from serious side effects so what does this suggest?

Also Rxisk who are doing so much for you guys in terms of trying to raise awareness and find a cure contacted every accutane victimwho previously emailed them and asked them to report their side effects to EMA and only 3 did so. They also asked lots of Doctors if they would raise red flags and not a single one bothered to do so!!

How many people have supported the Citizens Petition - only 20 or so. How can we expect changes if no one does anything and can't even be bothered to report their side effects. I know you are all sick of hearing me say this but do you really think I am wrong?

Can we all just pull together - we are not just looking to raise awareness we are trying to get research initiated and funded. We want to see victims compensated and supported when they reach out for help.

 

I hope I get some positive responses because trust me, unless we get victims reporting and at least some coming forward like ED, there will be not point in those of us who are campaigning, continuing to do so.

I will post all reporting linksagain throughout the day - if anyone want to discuss anything please get back to me.

 

As David Healy, a professor of psychiatry at Bangor University, who is studying the impact of isotretinoin, explains: Erectile dysfunction is psychologically devastating to young men and, without doubt, does lead to suicide.

There is almost certainly a link between sexual dysfunction and suicide in men, says Professor Healy.

Last month RxISK, an independent drug safety group based in Canada, called on the U.S. drug regulator to add a boxed warning to packets of isotretinoin to inform patients that sexual side-effects can sometimes persist indefinitely after discontinuation of the drug; they can emerge on treatment and remain afterwards, or emerge or worsen when the drug is stopped.

This petition is asking for better warnings but we need people to comment that the drug is unsafe and should not be given to kids etc - possibly an outright ban or it's use should be greatly reduced. People should put their strong views across.

 

 

Excellent info here Hatetane - thank you

Much appreciated with update on ACCUiTy. He is very knowledgeable and I miss his input but he has his reasons for getting onwith other things in his life.

I suspect the same thing - many have strayed from thisforum because its becometoo much for them, NOT because theyre cured - big difference!!!!

When I say cured, I mean everything including eye floaters gone and moisture back - not just I feel better today cause I eliminated sugar and bread from diet. Thats great and a start but not entirely sure that itll bring moisture back like we once had and you cant pass that off as cured

Having said that, we need to keep an open mind, many are getting good results from fasting. The good news with this is that there is some good science to back itup - especially with the stem cell regeneration, thats veryencouraging.

In case anyone wants to know,Mariovitali I noticed devotes his time to Phoenixrising forum talking to CFS people. Itsno different to what goes on here - people share info on what works, what doesnt, what tests theyve had done etc etc.

Link to this forum is on page 470 from memory

 

 

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MemberMember
6
(@mabbbs)

Posted : 01/17/2019 4:22 pm

6 hours ago, Calcified said:

You mentioned you had 24hr urine cortisol tested was that result higher than 9am serum blood test?

I too get huge rashes.

Not sure if such comparison is valid but both results were higher than the indicated range.

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MemberMember
1803
(@guitarman01)

Posted : 01/17/2019 5:48 pm

@Justdry

Unfortunately some things might not become realized until the problems become worse.

I started out with just dry skin. I think some regress, progress, or stay about the same.

The Gut Microbiome as a Major Regulator of the Gut-Skin Axis

Published online 2018 Jul 10.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6048199/

Though not yet fully explored, the mechanisms by which intestinal microbiota exert their influence on skin homeostasis appear to be related to the modulatory effect of gut commensals on systemic immunity (ONeill et al., 2016). Certain gut microbes and metabolites retinoic acid, polysaccharide A fromBacteroides fragilis, Faecalibacterium prausnitzii, and bacteria belonging toClostridiumcluster IV and XI promote the accumulation of regulatory T cells

A naive T cell can either become an inflammatoryTh17cell or anti-inflammatory Treg cells. The goal for people withTh17inflammation is to...

We know Accutane can have both anti inflammatory and pro inflammatory properties.

 

Systemic isotretinoin therapy normalizes exaggerated TLR-2-mediated innate immune responses in acne patients

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3614089/

Compared to normal subjects, peripheral blood monocytes from acne patients expressed significantly higher levels of TLR-2 and exhibited significantly greater induction of TLR-2 expression followingP. acnesstimulation. Treatment of patients with isotretinoin significantly decreased monocyte TLR-2 expression and subsequent inflammatory cytokine response toP. acnesby one week of therapy. This effect was sustained six months following cessation of therapy, indicating that TLR-2 modulation may be involved in the durable therapeutic response to isotretinoin. This study demonstrates that isotretinoin exerts immunomodulatory effects in patients and sheds light on a potential mechanism for its long-term effects in acne.

^this was the study I was thinking of @VanceAstro

we hypothesized that down-regulation of TLR-2 on monocytes and/or the induction of Treg responsesinvivo maymay represent mechanisms by which isotretinoin exerts its long-term effects.

Six months after stopping isotretinoin, TLR-2 expression in unstimulated andP. acnes-stimulated monocytes was still significantly decreased compared to baseline

TLR-2 down-regulation may not be permanent?, but may be maintained long enough to either modulate the adaptive immune response or to merely keep acne in remission until other age-related factors affecting the skin microbiome or sebaceous gland subside.

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MemberMember
397
(@calcified)

Posted : 01/18/2019 2:50 am

8 hours ago, guitarman01 said:

@Justdry

Unfortunately some things might not become realized until the problems become worse.

I started out with just dry skin. I think some regress, progress, or stay about the same.

The Gut Microbiome as a Major Regulator of the Gut-Skin Axis

Published online 2018 Jul 10.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6048199/

Though not yet fully explored, the mechanisms by which intestinal microbiota exert their influence on skin homeostasis appear to be related to the modulatory effect of gut commensals on systemic immunity (ONeill et al., 2016). Certain gut microbes and metabolites retinoic acid, polysaccharide A fromBacteroides fragilis, Faecalibacterium prausnitzii, and bacteria belonging toClostridiumcluster IV and XI promote the accumulation of regulatory T cells

A naive T cell can either become an inflammatoryTh17cell or anti-inflammatory Treg cells. The goal for people withTh17inflammation is to...

We know Accutane can have both anti inflammatory and pro inflammatory properties.

 

Systemic isotretinoin therapy normalizes exaggerated TLR-2-mediated innate immune responses in acne patients

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3614089/

Compared to normal subjects, peripheral blood monocytes from acne patients expressed significantly higher levels of TLR-2 and exhibited significantly greater induction of TLR-2 expression followingP. acnesstimulation. Treatment of patients with isotretinoin significantly decreased monocyte TLR-2 expression and subsequent inflammatory cytokine response toP. acnesby one week of therapy. This effect was sustained six months following cessation of therapy, indicating that TLR-2 modulation may be involved in the durable therapeutic response to isotretinoin. This study demonstrates that isotretinoin exerts immunomodulatory effects in patients and sheds light on a potential mechanism for its long-term effects in acne.

^this was the study I was thinking of @VanceAstro

we hypothesized that down-regulation of TLR-2 on monocytes and/or the induction of Treg responsesinvivo maymay represent mechanisms by which isotretinoin exerts its long-term effects.

Six months after stopping isotretinoin, TLR-2 expression in unstimulated andP. acnes-stimulated monocytes was still significantly decreased compared to baseline

TLR-2 down-regulation may not be permanent?, but may be maintained long enough to either modulate the adaptive immune response or to merely keep acne in remission until other age-related factors affecting the skin microbiome or sebaceous gland subside.

In your opinion do you think tlr2 stays suppressed? Like years after treatment. Everything I have read gives me the impression that high levels of tlr2 wouldn't be ideal. Any studies showing results further than 6 months after treatment.

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MemberMember
19
(@justdry)

Posted : 01/18/2019 4:41 am

10 hours ago, guitarman01 said:

@Justdry

Unfortunately some things might not become realized until the problems become worse.

I started out with just dry skin. I think some regress, progress, or stay about the same.

 

I get annoyed by statements such as this.

You can't blame everything that happens to your health decades after accutane, on accutane. When I say my digestion is absolutely spot on and i feel really healthy 8 years after accutane except for my skin, you can't thensit there and your response be ''oh some things might not happen until years after'' .... because that's the sad fact of life, conditions develop as we age.

People who have never touched accutane may develop IBS and other problems. The difference being, that many people on this forum blame everything that happens years and years after accutane, on accutane, when it is quite possible that accutane didn't cause it at all.

I've developed anxiety and stress over the past 2 years, after spending 6 years post accutane feeling stress free and as calm as you like. I can't blame that on accutane, that may have happened to me anyway. I work with people who have never even heard of accutane and are so much more anxious and stressed than I am. My colleague has turned to SSRI's and alcohol because it's gotten so bad for him, but if that was you, you'd blame it on accutane. What's he blaming it on?

There's no doubt in my mind that accutane causes the problems discussed on here, I'm not disputing that at all. All's I am saying is, you can't dismiss me saying my digestion is spot on and my gut as healthy as can be, by saying ''Oh you might develop this and this later'', Yeah, of course I bloody might, i'm getting older!

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0
(@Anonymous)

Posted : 01/18/2019 5:45 am

49 minutes ago, Justdry said:

I am saying is, you can't dismiss me saying my digestion is spot on and my gut as healthy as can be, by saying ''Oh you might develop this and this later'', Yeah, of course I bloody might, i'm getting older!

I agree that you can't blame everything on tane. Anxiety can happen to anyone for various reasons.

The fact that you still have dry skin and no digestive issues is something I've been thinking about.

But please keep us updated on your progress on your diet.

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MemberMember
1753
(@truejustice)

Posted : 01/18/2019 3:42 pm

I think we need to seperate them as best we can, of course we age and you might say hair will thin anyway, some will get grey hair, some peoples joints will play up over time regardless of Tane.

On the other hand, problems can occur when on Accutane and if left untreated can become worse - I think this is especially true of the nervous system, my light sensitivity has become progressively worse over the years and because my nervous system has been affected I even get a shaky hand from time to time, others have mentioned this too.

There are other examples but the point is, these issuesstem from Tane not from age even though aging in itself isnt going to help - due to having limited ability to pinpoint our issues, in a sense they are left untreated and thus these issues can become more acuteas time goes on imo.

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