No one is looking at long term effects. period.

 

don't kid yourself. you think you can extrapolate to ALL individuals based on a few studies? you're severely mistaken.

Some folks act as if there are piles of money somewhere to award to researchers who are banging down the doors to study Accutane side effects. While there have been some significant studies since the drug's invention, it's still remarkable how little is known about the drug's numerous mechanisms. That said, we can face up to what is known: that it's a 5-alpha reductase inhibitor that can cause epigenetic changes. http://www.ncbi.nlm.nih.gov/pubmed/19501473

 

MovingOn - I understand that you might have to take a pharmaceutical drug. Could it make you worse off? Maybe. But maybe not. And, if for you it feels like the difference between surviving or not, well, we'd be foolish to tell you to discontinue it.

 

I say this because I went on Prozac temporarily several weeks after I took Accutane. (It bears repeating - I took only five 40 mg pills). I wasn't grooming or eating and was so depressed and out of it I was barely lucid for a couple of days. Anyway. Was far from a cure, but it gave me some function during that time so I could continue working.

Yes I am aware of all of the research, as I took accutane 9 years ago and am still experiencing symptoms, i just think it's a false assumption that just because something is backed by research that it is safe...or effective for EVERYONE. that's what your message seemed to imply. so forgive me if ai misinterpreted it. and have you tried cannabis oil or vaping? i also think one needs to learn from experience...it takes some chance taking but that's how a lot of things are discovered, hell, accutane was discovered to "help" acne as a result of treating people with cancer. BOOM. i took 40mg as well. induced severe vitamin a induced anorexia, severe depression, and terrible joint pain since day one. luckily i got over the anorexia which is awesome since vitamin A hates skinny people due to lack of fat...it wreaked havoc on my body too. sorry to hear. I also think that others are jsut afraid of any drugs and immediately get some gut wrenching reaction, when i have done toons of research on naltrexone and it is very safe. I will keep reporting though to keep everyone updated as always. my doctor is a badass actually. unforuntately, he does not know the long term effects or about the DHT inhibiting effects of accutane.

In my opinion epigenetic is a lie, like the telomere theory. Epigenetic just control expression of gene depending of the environment/of what the body is confronted to, it's not permanent.

Effect of accutane never stop because he's really really hard to expell out of the body since it's a derived retinoic acid. Other's drugs can have the same effect, those poisonous molecules are stored in fat and slowly released, it can be reabsorbed in the intestine while the liver try to expell them too, etc.. that's why the effects last so long.

Telomere shortening is not a cause, but a consequence of an inflammatory/acid state (and other things).

@MovingOn - definitely did not intend to convey that I think isotretinoin is O.K. because most people don't present with side effects. Meaning must have crossed wires. I just think that paper is interesting, and on to something, as it suggests that certain drugs can cause epigenetic changes. It mentions isotretinoin.

I respect your opinion, anonyy, but I just think the epigenetic theories are more compelling. But we can all agree to disagree.

My biggest side effects have been cognitive (brain fog) and sexual (dysfunction), and it's incredible how much my experiences in those respects mirror some of what Propecia men complain of. I have also taken saw palmetto, which is how the problems began. As for my ongoing skin thinning - as in my eyelids, earlobes, hands and everywhere - that's definitely something Accutane did in its own unique way. Can't look to finasteride folks for that.

There don't seem to be many drugs/supplements that can cause persistent side effects, but saw palmetto, finasteride and Accutane (and Yaz and Mirena for some gals) are some substances that can cause long-term problems. (In full disclosure, for some of the things I listed, only personal anecdotes exist that demonstrate problems after discontinuation.) Anonyy, do you think it possible that in each case the offending drug/supplement is still stored in the body?

Finally, MovingOn, I have not tried cannabis oil. I suppose I would be willing to. Let's all fly to Colorado yesterday. Ah, kidding.

Have you tried it?

What is vaping?

Not sure if people have seen this or not, but I like that there is now an eHow article for reversing Accutane side effects.

[Edited link out] - Talks about the clay, raw diet, and boils down all our talk here to Crohn's/a Crohn's-type disease.

[Edited link out] - Talks about treatment for Crohn's, and a lot of it is stuff we already talk about like anti-inflammatories, liquid diet, antibiotics/immunosuppressant drugs, B12, probiotics, fish oil, herbal and nutritional supplements etc.

^You can also navigate around and see things like anemia, the bowel not being able to absorb nutrients etc and how to deal with that.

Even if this isn't the case, a lot of the symptoms overlap, as usual, so treatment options are listed.

Cheers

@MovingOn - definitely did not intend to convey that I think isotretinoin is O.K. because most people don't present with side effects. Meaning must have crossed wires. I just think that paper is interesting, and on to something, as it suggests that certain drugs can cause epigenetic changes. It mentions isotretinoin.

I respect your opinion, anonyy, but I just think the epigenetic theories are more compelling. But we can all agree to disagree.

My biggest side effects have been cognitive (brain fog) and sexual (dysfunction), and it's incredible how much my experiences in those respects mirror some of what Propecia men complain of. I have also taken saw palmetto, which is how the problems began. As for my ongoing skin thinning - as in my eyelids, earlobes, hands and everywhere - that's definitely something Accutane did in its own unique way. Can't look to finasteride folks for that.

There don't seem to be many drugs/supplements that can cause persistent side effects, but saw palmetto, finasteride and Accutane (and Yaz and Mirena for some gals) are some substances that can cause long-term problems. (In full disclosure, for some of the things I listed, only personal anecdotes exist that demonstrate problems after discontinuation.) Anonyy, do you think it possible that in each case the offending drug/supplement is still stored in the body?

Finally, MovingOn, I have not tried cannabis oil. I suppose I would be willing to. Let's all fly to Colorado yesterday. Ah, kidding.

Have you tried it?

What is vaping?

Vaping is just using a vaporizer to inhale the marijuana. it gets rid of most of the toxins as the thc becomes a vapor instead of smoke since it has a low burning point. I only did it when i had my most severe symptoms for relief, but the next day i felt tons better. there is some talk of it being an anti androgen but i have no side effects when i use it. none. i would only do it if it gets really bad for symptoms management. my head would swell some days and my joints would be creaking and cracking, with no help from water, HA, or iodine at a certain point. only that would help with symptom management. and yes, my plan is to move to cali in the next two years lol

Ahh it feels so lovely on this forum now that Cam is gone. I can breathe easier. You guys are awesome. thanks for working together to get him kicked off hahaha

MovingOn,

In the last 9 years, have your symptoms gotten worse or have they slowly improved somewhat?

 

@MovingOn - definitely did not intend to convey that I think isotretinoin is O.K. because most people don't present with side effects. Meaning must have crossed wires. I just think that paper is interesting, and on to something, as it suggests that certain drugs can cause epigenetic changes. It mentions isotretinoin.

I respect your opinion, anonyy, but I just think the epigenetic theories are more compelling. But we can all agree to disagree.

My biggest side effects have been cognitive (brain fog) and sexual (dysfunction), and it's incredible how much my experiences in those respects mirror some of what Propecia men complain of. I have also taken saw palmetto, which is how the problems began. As for my ongoing skin thinning - as in my eyelids, earlobes, hands and everywhere - that's definitely something Accutane did in its own unique way. Can't look to finasteride folks for that.

There don't seem to be many drugs/supplements that can cause persistent side effects, but saw palmetto, finasteride and Accutane (and Yaz and Mirena for some gals) are some substances that can cause long-term problems. (In full disclosure, for some of the things I listed, only personal anecdotes exist that demonstrate problems after discontinuation.) Anonyy, do you think it possible that in each case the offending drug/supplement is still stored in the body?

Finally, MovingOn, I have not tried cannabis oil. I suppose I would be willing to. Let's all fly to Colorado yesterday. Ah, kidding.

Have you tried it?

What is vaping?

Vaping is just using a vaporizer to inhale the marijuana. it gets rid of most of the toxins as the thc becomes a vapor instead of smoke since it has a low burning point. I only did it when i had my most severe symptoms for relief, but the next day i felt tons better. there is some talk of it being an anti androgen but i have no side effects when i use it. none. i would only do it if it gets really bad for symptoms management. my head would swell some days and my joints would be creaking and cracking, with no help from water, HA, or iodine at a certain point. only that would help with symptom management. and yes, my plan is to move to cali in the next two years lol

Ahh it feels so lovely on this forum now that Cam is gone. I can breathe easier. You guys are awesome. thanks for working together to get him kicked off hahaha

I'm glad it brought you some relief, MovingOn. I am very open minded so long as whatever I'm trying doesn't inhibit 5-alpha reductase. I'm also hesitant about psychiatric drugs for the time being but would do what I have to do I suppose if I felt like a total danger to myself. You knowwww.

I've only seen 2-3 shaky accounts of folks in our shoes being helped by Rick Simpson oil (I wish I could say a sample size of 2 doesn't excite me, but when you're hopeful, it does). Who am I to say whether it could or couldn't help.

I'd be willing to try it but would understand if others were cautious or opposed. No way to know if it'll make you worse or better.

Do we know of anyone else on here that's tried it, out of curiosity?

Could anyone point me to a user who's experienced dramatic skin thinning from Accutane?

Thanks for listening - I am relatively new to posting about Accutane side effects.

Let me jump in here. I took accutane 12 years ago. in the first years after I finished the accutane course, the symptoms slowly improved. but then after 7 or 8 years when I turned 40 it got a lot worse with every year. I don't know why but maybe the natural aging effect is kicking in when you turn 40. making the skin thinner and drier. and this comes on top to the accutane symptoms.

MovingOn,

In the last 9 years, have your symptoms gotten worse or have they slowly improved somewhat?

Playsomebeat,

Good article. Thanks for sharing. Two things, this article is published in the journal medical hypothesis, which means it is purely a theoretical hypothesis, not a fact. And this goes two directions as well. good vitamins and healthy diet can cause permanent or semi- permanent positive changes leading to prolonged life of cells.

If this theory is true, only option we have is to just constantly bathe our bodies with nutrients (healthy food), get plenty of rest, and hope our bodies rebalance themselves.

Healthy food is 90% of the work.

 

No one is looking at long term effects. period.

don't kid yourself. you think you can extrapolate to ALL individuals based on a few studies? you're severely mistaken.

Some folks act as if there are piles of money somewhere to award to researchers who are banging down the doors to study Accutane side effects. While there have been some significant studies since the drug's invention, it's still remarkable how little is known about the drug's numerous mechanisms. That said, we can face up to what is known: that it's a 5-alpha reductase inhibitor that can cause epigenetic changes. http://www.ncbi.nlm.nih.gov/pubmed/19501473

MovingOn - I understand that you might have to take a pharmaceutical drug. Could it make you worse off? Maybe. But maybe not. And, if for you it feels like the difference between surviving or not, well, we'd be foolish to tell you to discontinue it.

I say this because I went on Prozac temporarily several weeks after I took Accutane. (It bears repeating - I took only five 40 mg pills). I wasn't grooming or eating and was so depressed and out of it I was barely lucid for a couple of days. Anyway. Was far from a cure, but it gave me some function during that time so I could continue working.

Playsomebeat,

Good article. Thanks for sharing. Two things, this article is published in the journal medical hypothesis, which means it is purely a theoretical hypothesis, not a fact. And this goes two directions as well. good vitamins and healthy diet can cause permanent or semi- permanent positive changes leading to prolonged life of cells.

If this theory is true, only option we have is to just constantly bathe our bodies with nutrients (healthy food), get plenty of rest, and hope our bodies rebalance themselves.

Healthy food is 90% of the work.

Correct, it is only a hypothesis. This is only because we know so little about epigenetics in general, and especially how this drug (and most other drugs) work epigenetically. I have to say that this idea is a lot more plausible to me than the idea that the drug remains in our system after many many years, continuing to do damage. The drug, like any drug, is metabolized and is gone from our body in many half-lives.

Along with healthy food, I would add exercise and some stress reduction techniques.

Agreed. I just don't think the persistence of side effects absolutely means the drug is still in our body years later. I think it caused changes when we took it.

I mean, it's intended to shrink the size of your oil glands permanently, long after it's passed from your system.

If our receptors/gene expression are altered or negatively changed, it may be beyond eating healthy or raw. (Although I would consider going raw or fasting, definitely. Some people here have reported improvement from doing so.) I would never discourage anyone from eating healthy. Might as well optimize your body for natural recovery.

But I have complete sexual dysfunction from two 5-AR inhibitors, and it absolutely feels neurological. If researchers eventually establish why these substances cause cognitive and sexual problems in some individuals, and they create a potential cure, I will be banging down the doors for it. Synthetic or otherwise.

 

ChampionBlood, on 04 Nov 2013 - 01:43, said:

 

I've been questioning recently if I have sexual side effects, and the answer seems to be yes. Its especially noticible since I got my new girfriend. I don't know if this is a result of my depression or the effect of the drug. I was never really a sexual person to begin with, so I guess the sexual effects didn't bother me overly much in the past. Since I know you are a member of the ATM forums and are very knowledgable on PFS and Accutane sexual problems, what medical tests would you recommend that I and others get to assess the extent of our sexual side effects?

 

Strangely, although I have had plenty of tests in the past, I have never had my hormones checked. I would like to compare these results to others possibly here or on the ATM forums.

 

EDIT: Dubya-b, I found your post on the ATM forums:

 

quote_icon.png Originally Posted by Testosterone viewpost-right.png

Are there any known hormonal disturbances that commonly show up in lab work after taking Accutane?

 

"High DHEAS

High Cortisol

Slightly elevated Prolactin

Testosterone on the low-end

DHT on the low-end

A couple of us had 3-Adiol G on the low-end of the range.

A few of us had slightly elevated E2.

Vitamin D on the low-end.

Some of us have various Thyroid hormones either too high or low.

Low FSH and LH.

 

These are just a few of the common hormonal imbalances that have shown-up, but nothing seems consistent among the majority of us."

 

I will be getting these tests as soon as I can. Also, probably free cortisol saliva test.

Something strange about the sexual dysfunction caused by Accutane is that many of us have numbness/reduced sensation "down there". Without getting too explicit, I will just say that certain things that used to feel "reeeealy good!" before Accutane only feel "sort of good" after. Some Accutane sufferers have said it doesn't give any more pleasure than rubbing their finger. Also, it seems only about half of the guys on the ATM forum experiencing sexual dysfunction say they are also depressed. So, the ED, reduced pleasure, and reduced libido must occur independently of depression.

Besides the blood tests, you might want to consider the Rhein lab's 24hr urinary steroid profile. I don't think it's very great for showing actual levels of hormones, though it is good for detecting skewed ratios of certain hormones. It showed I had signs of a 5-alpha-reductase deficiency going by my ratio of tetrahydrocortisol to 5a-tetrahydrocortisol, while my DHT tests always came back looking good. It was under $200USD too, so it's a pretty decent value.

I see you have 23andMe results, which is amazing timing! Myself and another who is suffering sexual, depressive, and advanced-skin-aging symptoms after Accutane are both awaiting our results.

We are checking to see if we have certain types of some of the genes involved in methylation and B-vitamin metabolism linked to developing CFS, and also to see if we have one of the types of the retinoic acid receptor alpha (RARA) gene that has been linked to patients developing specific side effects from isotretinoin:

The effect of genetic polymorphisms of RARA gene on the adverse effects profile of isotretinoin-treated acne patients.

http://europepmc.org/abstract/MED/23...bdzmV2ZQsvj.24

RESULTS: Three-locus haplotype (Rs2715554 C/T - Rs4890109 G/T - Rs9303285 T/C) analysis showed that frequencies of CTG and TTG haplotypes are significantly associated with occurrence of arthralgia, myalgia, nose bleeds and headache in patients treated with isotretinoin. In addition, TCG haplotype was associated with nose bleeds and headache, whereas TTT haplotype was associated with arthralgia and myalgia. Furthermore, levels of AST were increased, and AST% change was more, after 1 month of treatment in patients with the TC genotype of rs2715554 polymorphism. Finally, allele T of rs9303285 was found to be protective against developing depression in the patients treated with isotretinoin.

TBH, I'm not sure exactly how to interpret raw genetic data, but can tell you what to look for:

There is an explanation of how to search through your genetic data here:

https://customercare.23andme.com/entries/21729836-How-do-I-find-my-raw-data-

The rsids you would want to search for in your data are:

Rs2715554

Rs4890109

Rs9303285 (Unfortunately, this snp doesn't appear to be included in 23andMe's current test. This is a real let-down since it is correlated to susceptibility to depressive symptoms.)

I "think" each one of these numbers represents a specific snp (single nucleotide polymorphism) location in the RARA gene.

Reading through the "example" data on 23andMe it appears there are 2 different nucleotides given for each snp in an individual's raw data and they aren't necessarily always complements of each other, which complicates interpreting the data.

Here is a long-winded explanation of what we are looking for and why: ....

Having a specific base-pair of nucleotides (either A/T or C/G) at a specific position in the gene will lead to a specific amino acid being placed in a specific position in the RARA protein when it is being built from the RNA copy of the RARA DNA.

...This will lead to an RARA protein that is shaped a certain way and behaves a certain way according to the combinations of amino acids that comprise it.

Altering one amino acid in a protein (the RARA receptor protein, in this case) can sometimes have little effect, and sometimes cause drastic changes in the way the protein behaves.

We are looking at different combinations of 3 nucleotides in this case, and each nucleotide is one in a set of 3 that codes for an amino acid, although the nucleotides being looked at are not next to each other in the DNA sequence of the gene.

... as a matter of fact, there is a possibility that one or more of the nucleotides does not actually code for the RARA protein, but is in the promoter (controls transcription rate and under what conditions the gene is to be copied) region of the RARA gene, but let's ignore that for now.

.................Anyways, to the best of my knowledge, if you have one of the combinations of SNPs mentioned in the paragraph above, then that means isotretinoin will theoretically effect you in a certain way as described in that paragraph. I still can't tell you exactly how to read it, but if you could post the data here or at the ATM forum, it would be greatly appreciated.

So. Here are the methylation genes, followed by corresponding rs numbers of relevant snps contained within them:

COMT V158M rs4680

COMT H62H rs4633

COMT P199P rs769224

VDR Bsm rs1544410

VDR Taq rs731236

MAO A R297R rs6323

ACAT1-02 rs3741049

MTHFR C677T rs1801133

MTHFR 03 P39P rs2066470

MTHFR A1298C rs1801131

MTR A2756G rs1805087

MTRR A66G rs1801394

MTRR H595Y rs10380

MTRR K350A rs162036

MTRR R415T rs2287780

MTRR A664A rs1802059

BHMT-02 rs567754

BHMT-04 rs617219

BHMT-08 rs651852

AHCY-01 rs819147

AHCY-02 rs819134

AHCY-19 rs819171

CBS C699T rs234706

CBS A360A rs1801181

CBS N212N rs2298758

SHMT1 C1420T rs1979277

Sorry if part of my explanation about reading the data is incorrect, I'm new to this too.

 

Playsomebeat,

Good article. Thanks for sharing. Two things, this article is published in the journal medical hypothesis, which means it is purely a theoretical hypothesis, not a fact. And this goes two directions as well. good vitamins and healthy diet can cause permanent or semi- permanent positive changes leading to prolonged life of cells.

If this theory is true, only option we have is to just constantly bathe our bodies with nutrients (healthy food), get plenty of rest, and hope our bodies rebalance themselves.

Healthy food is 90% of the work.

Correct, it is only a hypothesis. This is only because we know so little about epigenetics in general, and especially how this drug (and most other drugs) work epigenetically. I have to say that this idea is a lot more plausible to me than the idea that the drug remains in our system after many many years, continuing to do damage. The drug, like any drug, is metabolized and is gone from our body in many half-lives.

Along with healthy food, I would add exercise and some stress reduction techniques.

It would be great to know what the half-life of the drug is and how to shorten its half-life.

I believe in a couple of years the 23andme/gene route will be the way to go, because it will allow us to join up with peers who share a similar genetic profile and we will all be doing the same thing, taking the same supplements and there will be less trial and error.

From wikipedia:

Quote

Isotretinoin, when administered orally, is best absorbed when taken after a high-fat meal, as it has a high level of lipophilicity. In a crossover study, the peak plasma concentration was found to be more than doubled when taken after a high-fat meal versus a fasted condition. Isotretinoin is primarily (99.9%) bound to plasma proteins, mostly albumin. At least three metabolites have been detected in human plasma after oral administration: 4-oxo-isotretinoin, retinoic acid, and 4-oxo-retinoic acid. Isotretinoin also oxidizes, irreversibly, to 4-oxo-isotretinoin. The metabolites of isotretinoin are excreted through both urine and feces. The mean elimination half-life is 21 hours, with a standard deviation from this mean of 8.2 hours.

Meaning the amount of the drug in circulation will halve at least every 30 hours as a general rule. Some may be stored in fatty tissue, but certainly not still in the body in pharmacologically active concentrations several months or years after you quit taking it.

...Epigenetics is no more theory than evolution or relativity. Someone made a nice little app that shows how the main epigenetic mechanisms work:

[Edited link out]

ChampionBlood, here is the link for the methylation gene analysis from Genetic Genie. Does all the work for you!

[Edited link out]

Hi all

Won't bore you all with my backstory , surface to say I took this damn hellish thing back in 1996 and have regretted it ever since - along with other things but I think taking this drug really put the tin hat on it. I never realised in a million years that I was willingly taking a drug originally introduced for chemotherapy use.Wow.

Anyway was browsing the DM website just now and read about this blue algae drink/shot . The article caught my eye because it said it could help boost stem cell renewal and helping the liver to repair itself. Also to help slow down the ageing process in the body.

Here's the link from the Daily Mail website :

[Edited link out]

Link to the makers of the stuff :

[Edited link out]

A total waste of time or could this stuff be useful ????.

Following reading the last 80 or so pages of this thread and the masses of interesting advice/help being put forward I am taking Udos choice oil , Vitamin D3 1600IU , and hyaluronic acid/vit C/msm tablets.

Since accutane use I can't tolerate any sun hitting my face and even cloudy days causes my skin to look like a burning red mess. Same thing happens with a drops in temperature , in fact typing this my face is burning as I've yet to put heat on. Then again artificial heat kills me as well so a bit of a bugger all round.Also develped some lovely big scales on my nose and cheeks areas that are most pleasant. Have tried zillions of creams/lotions/potions and washes but as yet I'm still at a dead end.Appear allergic to anything topical on my skin be it natural treatments or even water. But have to wash or the good old acne rears its ugly head(s). My late mother , god rest her soul , called me a tortured soul , but all I've been doing is trying to get back to something like I was before. I'm pretty sure she would be horrified to know the truth of what I had taken back then , especially with the amount of distress that chemo caused her.

I have printed out the Hoffman- La Roche cover up of accutane doc that was linked on this thread and will give it to my GP next time I see her and I'm also seeing another new derm next month and will hand him a copy as well . I have mentioned before to GP's and derms that I believed possibly my symptoms were related to accutane use but they brush me off with it just being seb derm blah,blah,blah. they then give me anti depresses and now they've given me beta blockers due to my increased heart rate and dizziness .If my foggy memory serves me right I believe the only warnings given to me at the time were that the symptoms might last for around 9 months following the taking of this drug so haven't really argued against them too much.Well following reading this thread and the report I'll have more ammunition to persuade them otherwise. Also my painful stomach cramps which I was having seem to be related to the use of this drug. Just thought I'd developed some allergy but was strange as I would be I'd always down milk , especially if I was going out on a session to line the old stomach. Apologies I'm waffling on here which I said I wouldn't.

.

What dosage did you take of the Chemo drug?

On 11/11/2013 at 2:49 AM, Bobster said:

Hi all

Won't bore you all with my backstory , surface to say I took this damn hellish thing back in 1996 and have regretted it ever since - along with other things but I think taking this drug really put the tin hat on it. I never realised in a million years that I was willingly taking a drug originally introduced for chemotherapy use.Wow.

Anyway was browsing the DM website just now and read about this blue algae drink/shot . The article caught my eye because it said it could help boost stem cell renewal and helping the liver to repair itself. Also to help slow down the ageing process in the body.

Here's the link from the Daily Mail website :

[Edited link out]

Link to the makers of the stuff :

[Edited link out]

A total waste of time or could this stuff be useful ????.

Following reading the last 80 or so pages of this thread and the masses of interesting advice/help being put forward I am taking Udos choice oil , Vitamin D3 1600IU , and hyaluronic acid/vit C/msm tablets.

Since accutane use I can't tolerate any sun hitting my face and even cloudy days causes my skin to look like a burning red mess. Same thing happens with a drops in temperature , in fact typing this my face is burning as I've yet to put heat on. Then again artificial heat kills me as well so a bit of a bugger all round.Also develped some lovely big scales on my nose and cheeks areas that are most pleasant. Have tried zillions of creams/lotions/potions and washes but as yet I'm still at a dead end.Appear allergic to anything topical on my skin be it natural treatments or even water. But have to wash or the good old acne rears its ugly head(s). My late mother , god rest her soul , called me a tortured soul , but all I've been doing is trying to get back to something like I was before. I'm pretty sure she would be horrified to know the truth of what I had taken back then , especially with the amount of distress that chemo caused her.

I have printed out the Hoffman- La Roche cover up of accutane doc that was linked on this thread and will give it to my GP next time I see her and I'm also seeing another new derm next month and will hand him a copy as well . I have mentioned before to GP's and derms that I believed possibly my symptoms were related to accutane use but they brush me off with it just being seb derm blah,blah,blah. they then give me anti depresses and now they've given me beta blockers due to my increased heart rate and dizziness .If my foggy memory serves me right I believe the only warnings given to me at the time were that the symptoms might last for around 9 months following the taking of this drug so haven't really argued against them too much.Well following reading this thread and the report I'll have more ammunition to persuade them otherwise. Also my painful stomach cramps which I was having seem to be related to the use of this drug. Just thought I'd developed some allergy but was strange as I would be I'd always down milk , especially if I was going out on a session to line the old stomach. Apologies I'm waffling on here which I said I wouldn't.

.

I agree with taking DHT inhibitors without knowing enough at the time, but everything went back to normal when i stopped them and I didn't blame anyone besides myself. but thanks though. I'm fairing a lot better off than a lot of people so it's funny that that comment was made. good luck to you. Just wish I could be the same self i was pre tane.

On 11/11/2013 at 6:24 AM, Gladiatoro said:

What dosage did you take of the Chemo drug?

On 11/11/2013 at 2:49 AM, Bobster said:

Hi all

Won't bore you all with my backstory , surface to say I took this damn hellish thing back in 1996 and have regretted it ever since - along with other things but I think taking this drug really put the tin hat on it. I never realised in a million years that I was willingly taking a drug originally introduced for chemotherapy use.Wow.

Anyway was browsing the DM website just now and read about this blue algae drink/shot . The article caught my eye because it said it could help boost stem cell renewal and helping the liver to repair itself. Also to help slow down the ageing process in the body.

Here's the link from the Daily Mail website :

[Edited link out]

Link to the makers of the stuff :

[Edited link out]

A total waste of time or could this stuff be useful ????.

Following reading the last 80 or so pages of this thread and the masses of interesting advice/help being put forward I am taking Udos choice oil , Vitamin D3 1600IU , and hyaluronic acid/vit C/msm tablets.

Since accutane use I can't tolerate any sun hitting my face and even cloudy days causes my skin to look like a burning red mess. Same thing happens with a drops in temperature , in fact typing this my face is burning as I've yet to put heat on. Then again artificial heat kills me as well so a bit of a bugger all round.Also develped some lovely big scales on my nose and cheeks areas that are most pleasant. Have tried zillions of creams/lotions/potions and washes but as yet I'm still at a dead end.Appear allergic to anything topical on my skin be it natural treatments or even water. But have to wash or the good old acne rears its ugly head(s). My late mother , god rest her soul , called me a tortured soul , but all I've been doing is trying to get back to something like I was before. I'm pretty sure she would be horrified to know the truth of what I had taken back then , especially with the amount of distress that chemo caused her.

I have printed out the Hoffman- La Roche cover up of accutane doc that was linked on this thread and will give it to my GP next time I see her and I'm also seeing another new derm next month and will hand him a copy as well . I have mentioned before to GP's and derms that I believed possibly my symptoms were related to accutane use but they brush me off with it just being seb derm blah,blah,blah. they then give me anti depresses and now they've given me beta blockers due to my increased heart rate and dizziness .If my foggy memory serves me right I believe the only warnings given to me at the time were that the symptoms might last for around 9 months following the taking of this drug so haven't really argued against them too much.Well following reading this thread and the report I'll have more ammunition to persuade them otherwise. Also my painful stomach cramps which I was having seem to be related to the use of this drug. Just thought I'd developed some allergy but was strange as I would be I'd always down milk , especially if I was going out on a session to line the old stomach. Apologies I'm waffling on here which I said I wouldn't.

.

Honestly can't remember. Will have to ask my GP who I hope will have records of what I was given. Actually went private to get this stuff, not on the NHS but presume that hospital would have informed my doctors what prescriptions I was given.

Any thoughts on those drinks ?.

I experience exactly the same sides. Could not have described it any better. With the exception of stomach cramps. My stomach is fine. But the skin issues are identically.

On 11/11/2013 at 2:49 AM, Bobster said:

Hi all

Won't bore you all with my backstory , surface to say I took this damn hellish thing back in 1996 and have regretted it ever since - along with other things but I think taking this drug really put the tin hat on it. I never realised in a million years that I was willingly taking a drug originally introduced for chemotherapy use.Wow.

Anyway was browsing the DM website just now and read about this blue algae drink/shot . The article caught my eye because it said it could help boost stem cell renewal and helping the liver to repair itself. Also to help slow down the ageing process in the body.

Here's the link from the Daily Mail website :

[Edited link out]

Link to the makers of the stuff :

[Edited link out]

A total waste of time or could this stuff be useful ????.

Following reading the last 80 or so pages of this thread and the masses of interesting advice/help being put forward I am taking Udos choice oil , Vitamin D3 1600IU , and hyaluronic acid/vit C/msm tablets.

Since accutane use I can't tolerate any sun hitting my face and even cloudy days causes my skin to look like a burning red mess. Same thing happens with a drops in temperature , in fact typing this my face is burning as I've yet to put heat on. Then again artificial heat kills me as well so a bit of a bugger all round.Also develped some lovely big scales on my nose and cheeks areas that are most pleasant. Have tried zillions of creams/lotions/potions and washes but as yet I'm still at a dead end.Appear allergic to anything topical on my skin be it natural treatments or even water. But have to wash or the good old acne rears its ugly head(s). My late mother , god rest her soul , called me a tortured soul , but all I've been doing is trying to get back to something like I was before. I'm pretty sure she would be horrified to know the truth of what I had taken back then , especially with the amount of distress that chemo caused her.

I have printed out the Hoffman- La Roche cover up of accutane doc that was linked on this thread and will give it to my GP next time I see her and I'm also seeing another new derm next month and will hand him a copy as well . I have mentioned before to GP's and derms that I believed possibly my symptoms were related to accutane use but they brush me off with it just being seb derm blah,blah,blah. they then give me anti depresses and now they've given me beta blockers due to my increased heart rate and dizziness .If my foggy memory serves me right I believe the only warnings given to me at the time were that the symptoms might last for around 9 months following the taking of this drug so haven't really argued against them too much.Well following reading this thread and the report I'll have more ammunition to persuade them otherwise. Also my painful stomach cramps which I was having seem to be related to the use of this drug. Just thought I'd developed some allergy but was strange as I would be I'd always down milk , especially if I was going out on a session to line the old stomach. Apologies I'm waffling on here which I said I wouldn't.

.

^

Hi Roland ,

Sorry to read you have similar sides . Fingers crossed we'll get something sorted out one day mate. [Edited image out]

Well today I went and lined the coffers of another online skin store and ordered some sebclair cream to see if that can do anything. It is non steroid so there's a very slight chance that I might be able to tolerate the stuff - yeah right !!.

It as 100% nothing to do with genetic or epigenetic. It's about accutane who multiply x100 any weakness we had before by overwhelming an already tired and weak body. Changing diet (no meat, grains, dairy), no acidic food, regeneration of the intestine/colon and taking herbs to help the detoxination of the remaining toxins/acids/accutane is enough to heal ourselves. Epigenetic/genetic is a bad excuse we use when we don't know how the body or a drug work.

I spoke with a doctor-naturepath recently here in Charleston. He was the first medical professional I have talked with to both acknowledge that Accutane can cause damage and also had had experience in treating this damage in a patient. He believes that Accutane has damaged ALL of the human body's glands, not simply only the sebaceous glands. Apparently ( http://en.wikipedia.org/wiki/Gland ) all glands follow a similar pattern of genesis in forming from epithelial cells. He suggested that Chinese medicine has the answer to "plumping up" all of the glands through an herbal protocol. Essentially, the glands are not destroyed, but simply withered like branches of a tree, but since they are still connected to the body and semi-functioning, they can actually be reconstituted to a large degree. Also, he suggests acupuncture, and that the acupuncturist should be able to prescribe an herbal protocol along these lines. I am tired of buying expensive supplements but might be willing to give this kind of thing a try. Since glands synthesize hormones and play a critical systemic role in the body's overall health, it would make sense that many of these similarly structured organs were effected by Accutane. Moreover, it would mean that rejuvenating these organs will help us to heal to a great degree- skin, thyroid, pituitary, sex, nutrition, etc.

I spoke with a doctor-naturepath recently here in Charleston. He was the first medical professional I have talked with to both acknowledge that Accutane can cause damage and also had had experience in treating this damage in a patient. He believes that Accutane has damaged ALL of the human body's glands, not simply only the sebaceous glands. Apparently ( http://en.wikipedia.org/wiki/Gland ) all glands follow a similar pattern of genesis in forming from epithelial cells. He suggested that Chinese medicine has the answer to "plumping up" all of the glands through an herbal protocol. Essentially, the glands are not destroyed, but simply withered like branches of a tree, but since they are still connected to the body and semi-functioning, they can actually be reconstituted to a large degree. Also, he suggests acupuncture, and that the acupuncturist should be able to prescribe an herbal protocol along these lines. I am tired of buying expensive supplements but might be willing to give this kind of thing a try. Since glands synthesize hormones and play a critical systemic role in the body's overall health, it would make sense that many of these similarly structured organs were effected by Accutane. Moreover, it would mean that rejuvenating these organs will help us to heal to a great degree- skin, thyroid, pituitary, sex, nutrition, etc.

The key is to keep looking for answers , no one really knows the total damage we have been given no one exept for Roche

but there not telling , there would be way too many law suits .... in reality a whole generation of teenagers and young adults have been POISONED by a pharmaceutical company .

On 11/12/2013 at 1:12 AM, anonyy said:

It as 100% nothing to do with genetic or epigenetic. It's about accutane who multiply x100 any weakness we had before by overwhelming an already tired and weak body. Changing diet (no meat, grains, dairy), no acidic food, regeneration of the intestine/colon and taking herbs to help the detoxination of the remaining toxins/acids/accutane is enough to heal ourselves. Epigenetic/genetic is a bad excuse we use when we don't know how the body or a drug work.

The fact that this drug permanently resolves acne for many who take it points to long term changes in gene expression as a direct or indirect effect of the drug. It potentially "weakens"the body through this mechanism, leading to observable side effects.

Early gene changes induced by isotretinoin in the skin provide clues to its mechanism of action:

[Edited link out]

Epigenetic modification of retinoic acid-treated human embryonic stem cells:

[Edited link out]

Not trying to argue how valid any conventional or alternative treatment might be, but this drug 100% absolutely, positively does have epigenetic effects. That's not up for debate.

...Unless you want to argue that Accutane babies are often born severely deformed and retarded because their mothers consumed too much wheat and dairy from breakfast cereals.

You can speak for yourself for having an already tired and weak body before Accutane too. Most of us were the epitome of healthy young adults and teenagers before the drug, unless you buy into the hogwash that acne is a sign of physical illness.

Believe me, I wish the biological effects of accutane weren't true.

On 11/12/2013 at 5:03 AM, Dubya_B said:

On 11/12/2013 at 1:12 AM, anonyy said:

It as 100% nothing to do with genetic or epigenetic. It's about accutane who multiply x100 any weakness we had before by overwhelming an already tired and weak body. Changing diet (no meat, grains, dairy), no acidic food, regeneration of the intestine/colon and taking herbs to help the detoxination of the remaining toxins/acids/accutane is enough to heal ourselves. Epigenetic/genetic is a bad excuse we use when we don't know how the body or a drug work.

The fact that this drug permanently resolves acne for many who take it points to long term changes in gene expression as a direct or indirect effect of the drug. It potentially "weakens"the body through this mechanism, leading to observable side effects.

Early gene changes induced by isotretinoin in the skin provide clues to its mechanism of action:

[Edited link out]

Epigenetic modification of retinoic acid-treated human embryonic stem cells:

[Edited link out]

Not trying to argue how valid any conventional or alternative treatment might be, but this drug 100% absolutely, positively does have epigenetic effects. That's not up for debate.

...Unless you want to argue that Accutane babies are often born severely deformed and retarded because their mothers consumed too much wheat and dairy from breakfast cereals.

You can speak for yourself for having an already tired and weak body before Accutane too. Most of us were the epitome of healthy young adults and teenagers before the drug, unless you buy into the hogwash that acne is a sign of physical illness.

Believe me, I wish the biological effects of accutane weren't true.

For people with SEVERE disfiguring nodular acne I can actually see a use for this drug , key word SEVERE , and after all other options have been exhausted including diet etc...even then life might be better without a CHEMO drug in your system plus I read remission rates are at best 35% heck green tea acne lotion has a similar rate , BUT for most of us including me with MILD to MODERATE acne this is not a good option to PERMANENTLY damage your body/genes .Yes pregnant women can have deformed baby's that gives you an idea of what this drug does to the human body.

Yet derms hand this stuff out like CANDY to unsuspecting teenagers and young adults with a few pimples THAT is just so wrong .....

and it has to STOP. I remember the doc telling me , the drug leaves the system within a month or two , and I believed him , a mistake I deeply regret.

Having said that my long term side effects are not as bad as others so I guess I am lucky in a way but it has changed my life no doubt for the worse.