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3 hours ago, Doctorcolumbus said:What about dosage?
https://cancerres.aacrjournals.org/content/canres/65/21/9923.full.pdf
this mentions that 100 umol/L is toxic to cells. I have no idea about molar concentrations with drugs so this might need more professional help
6 hours ago, Quinc said:The AGN topical seems promising. A bit pricey but worth a try.
Another thing of interest I found for those of the opinion that Accutane is stored in the liver and remains stuck because of lack of bile flow:
https://www.hindawi.com/journals/crihep/2019/9270827/
Specifically this part:
By contrast, when14C-isotretinoin was administered to two patients with t-tube drainage of bile, there was a trend towards shortened half-lives, suggesting enterohepatic circulation of isotretinoin metabolites [15]. Our case is unique as the sequestering agent, cholestyramine, was administered to reduce isotretinoin toxicity (Figure1, arrow 4), associated with the potential accumulation of toxic metabolites recycling in the enterohepatic system. Serum ALT levels subsequently dropped by almost 50% within 2 weeks of starting cholestyramine (Figure1). The association between normalized liver function tests (LFTs) and cholestyramine therapy remains uncertain; however, ALT levels no longer decreased after discontinuation of cholestyramine 2 months later (Figure1, arrow 5).
If this study is right, isotretinoin metabolites may be circulating through a recycling process in the enterohepatic system, and who knows for how long they remain?
Take a look at this chart:
https://imgur.com/gallery/AQPTUBD
It was only the addition of cholestryamine that ALT leveled off. From number 3 to number 4, approximately hundred days past and yet ALT remained high. Up until the addition of cholestryamine.
Wowwww...
Just checked this.in 2018 my blood ALT lvls were 16. Now, as of one week ago,theyre 50. The 2018 blood testwas around the time I started Accutane, in other words post Accutane, my liver outputting enzymes that clearly indicate some residual toxicity.
My symptoms almost mimic the study above. Although my ALT isnot as high as 200, itsclearly elevated compared to before. Im feeling super confident that this actually supports the recycling of isotretinoin metabolites through the enterohaptic cycle theory. On Monday Im calling my doctor to get a prescription ofcholestryamine. Im gonna test this on myself and keep everyone posted.
my symptoms btw are hair loss, some stomach issues, and occasionally some joint pain. Crossing fingers this might be it
On 11/22/2020 at 7:19 PM, Quinc said:Wowwww...
Just checked this.in 2018 my blood ALT lvls were 16. Now, as of one week ago,theyre 50. The 2018 blood testwas around the time I started Accutane, in other words post Accutane, my liver outputting enzymes that clearly indicate some residual toxicity.
My symptoms almost mimic the study above. Although my ALT isnot as high as 200, itsclearly elevated compared to before. Im feeling super confident that this actually supports the recycling of isotretinoin metabolites through the enterohaptic cycle theory. On Monday Im calling my doctor to get a prescription ofcholestryamine. Im gonna test this on myself and keep everyone posted.
my symptoms btw are hair loss, some stomach issues, and occasionally some joint pain. Crossing fingers this might be it
Good discussion on cholestryamine and lowering vitamin A metabolites, activated charcoal and beans (soluble fiber) are good as well.
[Edited link out]
Attention: While you guys are figuring out how to fix ya'lls bodies, remember to also take a few minutes to respond to the UK's MHRA (like the FDA here) government inquiry (link below). This has been YEARS in the making. They WANT and NEED information from men that have been damaged Sexually and Mentally by Accutane.Imagine the impact a bunch of us could make! It is a simple 5 question survey, but you can also upload "proof" (ie: blood work). YOU or ANYONE (Girlfriends, Parents) anywhere in the WORLDcan respond. This might help to save other young people from getting damaged like us. MHU if you need help. https://www.surveys.mhra.gov.uk/5fa2caf33414eb1dd21958ad
13 hours ago, Quinc said:The AGN topical seems promising. A bit pricey but worth a try.
Another thing of interest I found for those of the opinion that Accutane is stored in the liver and remains stuck because of lack of bile flow:
https://www.hindawi.com/journals/crihep/2019/9270827/
Specifically this part:
By contrast, when14C-isotretinoin was administered to two patients with t-tube drainage of bile, there was a trend towards shortened half-lives, suggesting enterohepatic circulation of isotretinoin metabolites [15]. Our case is unique as the sequestering agent, cholestyramine, was administered to reduce isotretinoin toxicity (Figure1, arrow 4), associated with the potential accumulation of toxic metabolites recycling in the enterohepatic system. Serum ALT levels subsequently dropped by almost 50% within 2 weeks of starting cholestyramine (Figure1). The association between normalized liver function tests (LFTs) and cholestyramine therapy remains uncertain; however, ALT levels no longer decreased after discontinuation of cholestyramine 2 months later (Figure1, arrow 5).
If this study is right, isotretinoin metabolites may be circulating through a recycling process in the enterohepatic system, and who knows for how long they remain?
Take a look at this chart:
https://imgur.com/gallery/AQPTUBD
It was only the addition of cholestryamine that ALT leveled off. From number 3 to number 4, approximately hundred days past and yet ALT remained high. Up until the addition of cholestryamine.
Yeah I took the cholestyramine for a while. It's not fun to drink but it makes sense to try it. I'm doing pretty well these days but who knows which of the many things i've tried has made the difference. I feel like high dose vitamin D has been beneficial for sure
2 hours ago, marshl1 said:Yeah I took the cholestyramine for a while. It's not fun to drink but it makes sense to try it. I'm doing pretty well these days but who knows which of the many things i've tried has made the difference. I feel like high dose vitamin D has been beneficial for sure
Interesting, thanks for sharing. How long would you say from the point you started cholestryamine did the symptoms start getting better?
And what symptoms did you have if you dont mind me asking? Were all they improved with cholestryamine?
I do take a high dose vitamin D, specifically 5k iU with Potassium
25 minutes ago, TrueJustice said:Something like cholestryamine might be good if youve just come off tane and want to prevent problems arising
Id say its not much good if youre years downthe track with persisting issues though....
I could be wrong...
I would agree if it wasnt for my ALT still being elevated past baseline, and Ive been off Accutane for 2 years. Plus the chart I posted above shows that 100 days past off ofAccutane and no change in ALT until cholestryamine was added
1 hour ago, TrueJustice said:This is just elevated liver enzymes youre taking about yeah?
I think this was the first thing I ever had tested 20 years ago, they were high and I was put on Milk Thistle and then they went back into range
Sorry if theres more to it....Im not sure
Yes I think there are ways to lower your enzymes with things like vitamin E and milk thistle, but I think the unique function of cholestryamine as it binds to the bile acids and removessubstances like isotretinoin is key here. In the case I posted above, the ALT level for the girl was reduced with cholestryamine, but why would a medicine to lower cholesterol and bind to bile acids lower ALT? Theres a connection there between isotretinoin metabolites and elevated enzymes.I think trying it is worth it
23 hours ago, Anna Nim said:Attention: While you guys are figuring out how to fix ya'lls bodies, remember to also take a few minutes to respond to the UK's MHRA (like the FDA here) government inquiry (link below). This has been YEARS in the making. They WANT and NEED information from men that have been damaged Sexually and Mentally by Accutane.Imagine the impact a bunch of us could make! It is a simple 5 question survey, but you can also upload "proof" (ie: blood work). YOU or ANYONE (Girlfriends, Parents) anywhere in the WORLDcan respond. This might help to save other young people from getting damaged like us. MHU if you need help. https://www.surveys.mhra.gov.uk/5fa2caf33414eb1dd21958ad
Watching and waiting for your response. Every Single One of us shouldrespond to theMHRA inquiry questions. It has taken YEARS for it to get this much government attention. LESS Men may become hurt if you speak up. Something outside of our own misery for a change.
20 hours ago, TrueJustice said:This is just elevated liver enzymes youre taking about yeah?
I think this was the first thing I ever had tested 20 years ago, they were high and I was put on Milk Thistle and then they went back into range
Sorry if theres more to it....Im not sure
hey mate, how are your free bound copper levels, have you tested for them ?
If copper were to come up again with kinesiologist, hell find it - save the hassle of doing a blood test etc etc
Ive had high copper found in a hair mineral analysis done 10 years ago - beyond going on moly zinc couldnt tell you if its now low or high - it certainly hasnt come up in the last few years working with kinesiologist
Copper vs Zinc is something to look at though
21 hours ago, Anna Nim said:Watching and waiting for your response. Every Single One of us shouldrespond to theMHRA inquiry questions. It has taken YEARS for it to get this much government attention. LESS Men may become hurt if you speak up. Something outside of our own misery for a change.
I don't see how people mentioning listed, proven and well known side effects will do anything.
6 hours ago, Calcified said:I don't see how people mentioning listed, proven and well known side effects will do anything.
Calcified,
They are seeking the public's information. There are simply Not Enough Reports of Sexual Sides and Depression/Suicide for them to take it serious enough. It is not 'proven' enough..clearly. Not a single of my son's Drs have ever treated an ISO patient and simply said he did not have ED & refused to do blood work. Not enough people report their issues to the FDA, MHRA, etc. Every male on this site needs to spend 15 min on this! Then you all can go back to endlessly discussing supplements and erections. This inquiry is not a magic bullet. I know too well thelimitations of this inquiry. That being said,I am thinking of this in the same way as the Abortion Laws are being chipped away in the USA. It has taken decades, but now there are more and more restrictions and paperwork, etc.
This has been YEARS in the making. YEARS. This movement has been pushed by grieving Mothers of injured and dead children. They are (only) considering more checklists and steps and warnings. More warnings are helpful. More of our VOICES on record may lead to other countries redistrictingit.
Take the time to help someone else. It is what we have. They are only going on for a few months!
@Anna NimHonestly if it just dried the skin we wouldn't need a specialist to prescribe it. Its a last case scenario drug and prescribedin smaller dosages now under the Australasian college of dermatology.
17 hours ago, Calcified said:@Anna NimHonestly if it just dried the skin we wouldn't need a specialist to prescribe it. Its a last case scenario drug and prescribedin smaller dosages now under the Australasian college of dermatology.
Data matters.What happens in the UK may spread to other places. Every affected person on this thread should fIll out the survey!ONLY 5 QUESTIONS! Then we can go back to spending hours discussing cures and supplements.
In much of the world it isNOT being used as a "Last Case". The USA does not have warnings for the sexual sides, it seems given out like candy. My recommendation is save for over 18 year olds, only after 6-9 months of documented other medications (at least two of them oral), etc. I mean, this shit should not even be given to death row inmates..but here we are..
Here is my second letter I sent months ago.. I am however going to revise and re-submit for their new survey. I am a English teacher-so if anyone needs help with their statement. HMU!
MHRA,
I am writing in regards to the upcoming inquiry regarding Roaccutane/Accutane/Isotretinoin as a concerned parent. I firmly believe this is the most dangerous drug on the market today. No amount of blood work, monitoring, or expanded PIP's will make this drug safe enough for the bodies and brains of our young people.My previously entirely healthy, happy son has been damaged permanently by this drug and it should be taken off the market.
Side effects of this drug are grossly under-reported. Because of this, the public believes it is not as dangerous as it is. The term "side effects" does not do justice to the horrors this drug causes. Permanent brain fog, permanent sexual issues, permanent vision issues, permanent depression and permanent joint pain, triggering of autoimmune diseases and cascading health issues from the gut/brain absorption are caused by this brain-damaging chemotherapy-type drug. If the public knew that the risk of PERMANENT damage was as high as it is, then few would take it. In fact, sheer disbelief and denial over how bad this drug is is what leads to its continued presence on the market. Surely, the government would not allow a drug that is this bad on the market for 35 years, right? Knowing what I know now, it is unbelievable that this is still on the market.
My beautiful, only son, my only child, took (Ro)Accutane for about 6 months two years ago and seemed to do okay with normal side effects (dry skin, bloody nose, etc). I now realize that it stunted his growth. He is no taller than myself or his father, despite having very tall brothers and uncles on both sides of the family. He also has had and some other issues that I now realize is likely from the drug, although I did not realize it at the time. My Doctor had told us that there was a "very small risk" of growth stunting, depression, dry skin and not to get pregnant. Any paperwork would have been dismissed as, "All drugs have side effects." How wrong I was.
The real trouble started when his acne returned. I thought that a short second course would be appropriate, especially since his first round was "successful". In July 2019, he started taking 80 mg a day.Two and a half months into his course, he came to me and told me that he noticed something wrong with his penis. He stopped taking it THAT day. Now, almost four months later he still has raised testicles (unsure if they are shrunken or simply higher), Peyronie's Disease (curvature), his penis has rotated on axis, and has a possible decrease in size of penis. He previously reported excessive post-orgasm exhaustion, issues with rebound rate, decreased sensitivity and libido issues as well.
As his mother, I should not know this much about his sexual functioning. Imagine how scared he had to be to come to his mother about this! I am still awaiting the results of complete blood work checking his hormone levels. Although, I have discovered due to this drug damaging your pituitary gland, that even if he is lucky enough to have 'normal' blood work, the hormones may not be uptaked into the brain. I have personally spoke to almost a dozen other men with permanent sexual issues from this drug, some of them decades afterwards. I have also spoken to people with other permanent issues decades later.
People find it hard to believe my son has so many issues from a legal drug. It seems impossible, until you realize how common this is. There are Facebook groups with thousands of members suffering from side effects. It is an open secret.My son has ongoing joint pain, changes to the texture of his hair (because it is a chemotherapy-type drug), sleeping issues, ongoing low energy, and stomach issues. He lost weight; a lot of it. He is 1.55 meters and only 60 kg, despite my attempts to fatten him up. His stomach is bothered by almost everything he eats. My son is worried his hair is thinning, and I think he is right. Worse, he has developed light sensitivity, decreased vision issues and appears to have some sort of blind spot at night in the center of his vision. A trip to a regular ophthalmologist shows no issues, we will be seeing a neurologist ophthalmologist when I can get him in, but I have little hope doctors can do anything. They do not seem to do anything after this drug damages the body and are in denial. The dermatologist wipes their hand of you, the specialists are in denial and the patient is doomed.
My son also became very, very depressed on this drug. He and I talked about it, his doctor talked about it. I watched as he became negative, irritable and depressed-but yet, the Doctor continued to prescribe it. It was not until he had been off the medication for a few weeks that he realized just how depressed he was. We thought we were aware of the effects of this drug, we were paying attention and looking for signs, yet my son was floored at how much better he felt off of it. That is terrifying. No one realized how bad it was.
In regards to the suicide risk; suicides are not due to the oft-quoted "predisposition to depression" mindset. If so, you would think simply getting off the drug when your depression gets too much, and monitoring by concerned, loving parents and mindful doctors would stop it. But it is not the case,this drug literally changes the very way a person thinks. It induces psychosis and irrational thinking without warning.
Do not underestimate the silent epidemic of young men suffering from permanent erectile dysfunction, testicular pain, genital numbness, lack of ability to orgasm, and libido as part of the, "Isotretinoin Suicides". The effect of a young man losing their sexual functioning absolutely causes suicide. Due to the type of nerve or brain damage to the sexual organs/part of brain, doctors are little help. Many suicides from sexual or other permanent issues caused by this dangerous drug, but they occur months and years later out of sheer desperation.
Money makes the world go around, but at the cost of our young people's bodies and minds. This drug is far more dangerous than realized. While not everyone suffers permanent side effects, I feel that no one escapes unscathed. The damage is cumulative. No amount of regulation will make this safe. None. It is like asking, "How much rat poison is safe?" The answer is none.
Please take action to save other children.
Respectfully,
Colette Ann
Oh, the agony and anguish of 15 minutes filling out a form. If I spend that much time performing an altruistic act, what's in it for me?
That's 15 fewer minutes in life to contemplate which obscure RAR antagonist will sit on a shelf between the quercetin and rick simpson oil in my cabinet of failed treatments.
56 minutes ago, TrueJustice said:Survey done!!!
I dunno, all these surveys just to combat a chronic Candida problem....
Tell the fuckers to report the findings this time unlike the previous 5 surveys over the last 20 years pls - who would know the outcome from those?
thanks
Hey, DYK that you can ask to be kept informed of the outcome of this. They have written me back about my son's story..and I am not done with them yet. DYK, Only 25 people reported sexual side effects in the UK this year...25. I call BS. They do not believe that the effects are as bad as they are, the other sides, as we well know are being blown off. This inquiry has taken years to come to this point. They are looking at more guidelines and warnings on this drug in the UK. I KNOW that is not enough, I really do, but numbers matter. This information might be used for other countries to become aware, etc, etc. I know it is a impossible mountain. But regardless, we ALL should report ALL of our issues to the MHRA (and the FDA in the USA).
19 hours ago, Calcified said:@Anna Nimok I did it, honestly why some specialists still give out high dosagesis beyond my comprehension.
Thanks sweetie. I know it is limited in scope, but numbers matter.
I believe my son was given an overdose, when I look up his weight and dose. IDK if it would matter to an attorney, as sexual sides are not even RECOGNIZED in the USA, and no doctor will believe us or certainly write about it. His dose was WAY too high. My son feels bad for asking for the increase, and I feel bad for pushing to get us into a Dr. Ruined our lives. He is struggling with attention span and brain power, which I know is this poison..
2 hours ago, Anna Nim said:Thanks sweetie. I know it is limited in scope, but numbers matter.
I believe my son was given an overdose, when I look up his weight and dose. IDK if it would matter to an attorney, as sexual sides are not even RECOGNIZED in the USA, and no doctor will believe us or certainly write about it. His dose was WAY too high. My son feels bad for asking for the increase, and I feel bad for pushing to get us into a Dr. Ruined our lives. He is struggling with attention span and brain power, which I know is this poison..
how did you find out what dose was needed for weight and height ?
I have seen dosage recommendations in various places. I am not quite sure what the 'legal' amounts are. You height is irrelevant. Regardless of dose, this is TOXIC and UNSAFE at anydose. ANYdose is dangerous. Here a 40 page bookletfromthe FDA's own website. https://www.accessdata.fda.gov/drugsatfda_docs/label/2008/018662s059lbl.pdf
(Anyone reading this, please ensure you fill out the MHRA survey regarding sexual side effects and suicide, regardless if you even took it they want to hear from the people)
DOSAGE AND ADMINISTRATION Accutane should be administered with a meal (see PRECAUTIONS: Information for Patients). The recommended dosage range for Accutane is 0.5 to 1.0 mg/kg/day given in two divided doses with food for 15 to 20 weeks. In studies comparing 0.1, 0.5, and 1.0 mg/kg/day,8 it was found that all dosages provided initial clearing of disease, but there was a greater need for retreatment with the lower dosages. During treatment, the dose may be adjusted according to response of the disease and/or the appearance of clinical side effects some of which may be dose related. Adult patients whose disease is very severe with scarring or is primarily manifested on the trunk may require dose adjustments up to 2.0 mg/kg/day, as tolerated. Failure to take Accutane with food will significantly decrease absorption. Before upward dose adjustments are made, the patients should be questioned about their compliance with food instructions. (p. 30).
It also has a chart for weight/dosing (would not copy right). My son was simply given too much, but ANY is too much IMHO...
Anna Nim