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On 2018-01-07 at 0:16 AM, Gladiatoro said:One poster went on 5 rounds of isotretinoin , and he is still breathing crazy world we live in.
Im shocked and amazed at the same time btw he still has acne so my cure rate rating for isotretinoin should be more like 10 % vs 60.
it is likely more than 60%, it might be more because 60 % of the ones who have taken accutane got no side effects and are cured, and do not sit on forums like that, you guys are all special cases.
Stop calling everyone dumb? what the hell is wrong with you? you don't seem any better yourself.
On 2018-01-08 at 10:18 PM, tanedout said:@fingaszyou really are clueless! Won't waste anymore time replying to you as you're totally ignorant to the situation people are in here and the dangers of this drug, but maybe you'll get to 'join the club' one day then you can see what it's all about.@mariovitali Assuming a fibroscan shows evidence of NASH is there a recommended supplement regime? I understand you had success with TUDCA and choline (amongst other sups), but have people who have had these scans been able to improve their situation based on confirmation of there being a varying degree of liver damage and then taking specific actions?
Why are you telling him to join the club? there is a 90% change that he won't. milions of people have taken this drug, and only like 1% or even less have such horrible side effects. Just look at the reviews on different sites, look at all the youtubers who have taken it, they are happy.
8 hours ago, guitarman01 said:This is pretty cut and dry right here.
This is showing a antagonistic relationship with Retinoic Acid and Vitamin K2.Z Kardiol.2001;90 Suppl 3:38-42.Transcriptional regulation of matrix gla protein.
Abstract
Matrix Gla Protein (MGP) is a small protein which is thought to be an inhibitor of tissue calcification and a regulator of cell differentiation. In this study we have examined the transcriptional regulation of MGP within rat vascular smooth muscle cells (VSMCs). We found that MGP transcription is downregulated by retinoic acid and transforming growth factor beta (TGF beta) whereas it is upregulated by vitamin D3 and cyclic AMP.
Then Looking at the potentialconsequences...
Matrix Gla protein regulates calcification of the aortic valve.
Matrix Gla protein regulates calcification of the aortic valve.
CONCLUSIONS:
An important anti-calcification defense mechanism is deficient in calcified aortic valves. MGP expression is significantly lower in diseased relative to normal AVICs. Lack of this important "anti-calcification" protein may contribute to calcification of the aortic valve.
ACCUTANE (isotretinoin capsules) - FDA
calcification of the coronary arteries
were observed in two dogs after approximately 6 to 7 months of treatment with isotretinoinLooking at this, there could be vascular signs/symptoms long before the ultimate consequence.
This might be where "atrophy" comes from. Tissues are literally being choked out of blood supply/oxygen.
Vascular remodeling.Retinoic acid is a negative regulator of matrix Gla protein gene expression
Which of course can be prevented / reversed with K2 :
4 hours ago, ScarRight said:The vast majority of patients have their side effects cease once Accutane has been stopped. The vast majority on this forum would tell you that. Sorry to hear if you had a bad experience. Starting on 40mg is a very high starting dose.
We all know permanent dehydration is a side effect of accutane just ask Emma Stone. Since tan my circulation is horrible .
Since taking accutane my eyes , mouth , lips , skin are all so dry she said. And like I said I would throw in mental dips and joint pain as the REAL long term side effects.
Long term side effects ARE real anyone that says they are not is LYING. And they WILL make their way into your life 10 , 20 , 30 etc years later.
So you have to ask yourself punk what kind of debilitating side effect are you going to have down the road.
A simple line of logic for anyone /Drsclaiming side effects must disappear as soon as you stop the drug. Remember, clear skin was technically a side effect noted on patients when Accutane was being developed for chemotherapy. Clear skin is a lasting 'side effect' after stopping the drug ,so why can't any other side effects I experienced originating at that time also be lasting? Why is clear skin the only one allowed to be?
6 minutes ago, Mike San said:A simple line of logic for anyone /Drsclaiming side effects must disappear as soon as you stop the drug. Remember, clear skin was technically a side effect noted on patients when Accutane was being developed for chemotherapy. Clear skin is a lasting 'side effect' after stopping the drug ,so why can't any other side effects I experienced originating at that time also be lasting? Why is clear skin the only one allowed to be?
If you have permanently clear skin after isotretinoin you surely have other permanent sides too it only makes sense. It really does permanently alter the way your body functions no question.
And I will say it again Honest derms will tell you joint pain especially lower back and depression is what we are worried about in the long run.
But its NOT depression its more like decreased brain function that comes and goes. One guy said it right mental dips is accurate.
These sides are REAL after all. Throw in dry everything to finish of the picture.
Throw in permanent poor circulation opps forgot that one and we finally have a complete picture of this crazy drug.
Another guy mentioned I though it was a miracle drug until the lower back pain kicked in.
It was was the greatest summer of my life wait for it...... until I was paralyzed from fish oil that would be me yeah three days bed ridden unable to move due to retinol intake , no joke.
12 hours ago, Duperele said:Why are you telling him to join the club? there is a 90% change that he won't. milions of people have taken this drug, and only like 1% or even less have such horrible side effects. Just look at the reviews on different sites, look at all the youtubers who have taken it, they are happy.
I'm not 'telling' him to join the club - I hope for his sake he doesn't - the point is you don't get the option. You are at risk of involuntary 'membership' by simply having taken the drug, in any dosage, and the side effects can manifest over time, you are not 'in the clear' if you come off and feel fine after a few weeks.
It's not just accutane, it's all other drugs in the same class, finasteride, deca, certain SSRI's etc. These are extremely dangerous drugs and once these dangers are fully understood they will almost certainly be banned completely, just like what happened with drugs such asthalidomide for example.
Many of the people raving about accutane on youtube will likely go on to develop serious conditions such as bowl cancer, heart failure, sexual dysfunction etc, and most will probably not link this to having taken the drug. Just look how 'treatment' increases so many of the markers for serious illness.
With increasing awareness of the dangers and side effects it's only a matter of time until statistics start linking things like much higher instances of premature deaths to people who have taken certain drugs like accutane. The pool of data is unfortunately still expanding as people are still trading having acne for a (shortened) life of serious health conditions.
12 minutes ago, tanedout said:I'm not 'telling' him to join the club - I hope for his sake he doesn't - the point is you don't get the option. You are at risk of involuntary 'membership' by simply having taken the drug, in any dosage, and the side effects can manifest over time, you are not 'in the clear' if you come off and feel fine after a few weeks.It's not just accutane, it's all other drugs in the same class, finasteride, deca, certain SSRI's etc. These are extremely dangerous drugs and once these dangers are fully understood they will almost certainly be banned completely, just like what happened with drugs such asthalidomide for example.
Many of the people raving about accutane on youtube will likely go on to develop serious conditions such as bowl cancer, heart failure, sexual dysfunction etc, and most will probably not link this to having taken the drug. Just look how 'treatment' increases so many of the markers for serious illness.
With increasing awareness of the dangers and side effects it's only a matter of time until statistics start linking things like much higher instances of premature deaths to people who have taken certain drugs like accutane. The pool of data is unfortunately still expanding as people are still trading having acne for a (shortened) life of serious health conditions.
Correct sides will slowly creep into your life years later you may not connect the dots immediately but eventually you will .
15 minutes ago, tanedout said:I'm not 'telling' him to join the club - I hope for his sake he doesn't - the point is you don't get the option. You are at risk of involuntary 'membership' by simply having taken the drug, in any dosage, and the side effects can manifest over time, you are not 'in the clear' if you come off and feel fine after a few weeks.It's not just accutane, it's all other drugs in the same class, finasteride, deca, certain SSRI's etc. These are extremely dangerous drugs and once these dangers are fully understood they will almost certainly be banned completely, just like what happened with drugs such asthalidomide for example.
Many of the people raving about accutane on youtube will likely go on to develop serious conditions such as bowl cancer, heart failure, sexual dysfunction etc, and most will probably not link this to having taken the drug. Just look how 'treatment' increases so many of the markers for serious illness.
With increasing awareness of the dangers and side effects it's only a matter of time until statistics start linking things like much higher instances of premature deaths to people who have taken certain drugs like accutane. The pool of data is unfortunately still expanding as people are still trading having acne for a (shortened) life of serious health conditions.
And how do you know that people will have heart failure or cancer? where the hell did you get that from?
About 10% of the US population have erectile dysfunction, which means that about 10% of accutane users will have erectile dysfunction, not because of accutane.
4 minutes ago, Duperele said:And how do you know that people will have heart failure or cancer? where the hell did you get that from?About 10% of the US population have erectile dysfunction, which means that about 10% of accutane users will have erectile dysfunction, not because of accutane.
He is just saying there are unknown long term effects of this CHEMO drug not fully understood. Heck derms dont even know how it works.
21 minutes ago, Duperele said:And how do you know that people will have heart failure or cancer? where the hell did you get that from?About 10% of the US population have erectile dysfunction, which means that about 10% of accutane users will have erectile dysfunction, not because of accutane.
For starters 10% is probably under-reported as obviously this is a taboo subject for many people. But how many of these people are suffering from ED as a result of drugs like accutane, propecia, SSRI's etc? Probably a significant percentage I would imagine as a lot of people are still taking these drugs, and they are known to cause ED.
Bowel cancer is one of the few things people have been able to successfully sue Roche for regards accutane. Bowel conditions are already on the list of sides in the leaflet, and I believe potential increased risk of bowel cancer is one of the new sides they are to be listing, along with risk of permanent sexual dysfunction (ED, loss of libido, loss of orgasm).
These drugs cause imbalances in cellular systems in the body which are not well understood, and these imbalances only cascade over time causing further issues downstream, onset of diseases etc. There are a number of studies ongoing in the PFS community, and they've shown things like seriously altered neurosteroid levels in intercranial fluid of people who've taken the drugs.
If you've already taken this drug, then commiserations, but if not and you're trying to convince yourself that all this talk of serious sides is overblown and you'll be ok, then I would have a serious think about it and do some more research. I wish I had done just that, but sadly it's too late now.
12 minutes ago, tanedout said:For starters 10% is probably under-reported as obviously this is a taboo subject for many people. But how any of these people are suffering from ED as a result of drugs like accutane, propecia, SSRI's etc? Probably a significant percentage I would imagine as a lot of people are still take these drugs, and they are known to cause ED.Bowel cancer is one of the few things people have been able to successfully sue Roche for regards accutane. Bowel conditions are already on the list of sides in the leaflet, and I believe potential increased risk of bowel cancer is one of the new sides they are to be listing, along with risk of permanent sexual dysfunction (ED, loss of libido, loss of orgasm).
These drugs cause imbalances in cellular systems in the body which are not well understood, and these imbalances only cascade over time causing further issues downstream, onset of diseases etc. There are a number of studies ongoing in the PFS community, and they've shown things like seriously altered neurosteroid levels in intercranial fluid of people who've taken the drugs.
If you've already taken this drug, then commiserations, but if not and you're trying to convince yourself that all this talk of serious sides is overblown and you'll be ok, then I would have a serious think about it and do some more research. I wish I had done just that, but sadly it's too late now.
In my opinion this drug will be banned in the near future once all its mechanisms are fully understood.
Just like VIOXX was pulled from the market after it was linked to heart attacks.
16 minutes ago, Gladiatoro said:In my opinion this drug will be banned in the near future once all its mechanisms are fully understood.Just like VIOXX was pulled from the market after it was linked to heart attacks.
I agree, I think fortunately it won't be too much longer. It's likely to start with Propecia etc as those guys are much more organised and better funded with theMelcangi and Harvard studies already done (some of the guys suffering with PFS have personally donated 10's of thousands), and the Baylor study results due soon (apparently this is also going to state the side effects are believed irreversible), then presumably they'll check for the same markers for people suffering from related conditions like post-accutane etc and once they find the same, a ban will be almost immediate I would think, unless Roche pull it first - they'll be keeping a close eye on these studies no doubt.
A drug that causes impotence in young men needs to be pulled off the market , it really does hamper blood flow in the human body why do you think people have chronic dry eyes mouth skin lips after exposure.
28 minutes ago, tanedout said:I agree, I think fortunately it won't be too much longer. It's likely to start with Propecia etc as those guys are much more organised and better funded with theMelcangi and Harvard studies already done (some of the guys suffering with PFS have personally donated 10's of thousands), and the Baylor study results due soon (apparently this is also going to state the side effects are believed irreversible), then presumably they'll check for the same markers for people suffering from related conditions like post-accutane etc and once they find the same, a ban will be almost immediate I would think, unless Roche pull it first - they'll be keeping a close eye on these studies no doubt.
Remember Roche pulled it years ago due to patent expiry and endless law suits . Generics are still available , just as dangerous / deadly I might add. But it also messes with spinal fluid ....
I've met several people who now have a form of Intracranial Hypertension (too much cerebrospinal fluid) that was caused by taking Accutane. (I had this condition, but it was idiopathic and it now in remission!) One case was resolved with daily medication and a lumbar puncture to drain fluid, but another had to have a shunt installed to drain the CSF fluid from the brain into the abdomen. The very first question the neurologist asked me was "have you taken isotretinoin for acne?"
I just want people to treat this as the serious medical decision it is. Many people take Accutane with few or easily manageable serious side effects, but some have dangerous side effects- and it should be considered very carefully.
So you tell me how safe it is .... remember kids and young adults are taking this.....
That would explain the hair loss due to intercraneal pressure increase literally chocking off hair folicals.
2 hours ago, Gladiatoro said:In my opinion this drug will be banned in the near future once all its mechanisms are fully understood.Just like VIOXX was pulled from the market after it was linked to heart attacks.
It won't happen until everyone reports their side effects.
https://yellowcard.mhra.gov.uk/iDAP/
(click I and then IS and scroll down for isotretinoin)
Have a look at reported side effects UK
Remember, FDA and MHRA state that only between 1 and 10% will ever report their side effects.
Given the nature, age and progression of accutane victims I suspect the numbers reporting are even less in our case.
Nearly everyone I have spoken to can't me asked to report their sides - some because they are to ill, some because the sides have been so
gradual and others because of the time lapse. Clearly many young men won't even go to their GP's about the sexual sides and when they do;
does the GP tell them to report or do they flag it themselves - no they do not!
Does anyone know if there is a world central agency that holds collective records on reported sides?
I hope some of you will begin to see why reporting is so important.
Does anyone for one minute that this anywhere close to being representative of the true numbers.
If anyone wants to report and doesn't know how, PM me and I will guide you.
https://www.recallreport.org/side-effects/
Sexual sides not listed so why are people not suing?
1 hour ago, tanedout said:I agree, I think fortunately it won't be too much longer. It's likely to start with Propecia etc as those guys are much more organised and better funded with theMelcangi and Harvard studies already done (some of the guys suffering with PFS have personally donated 10's of thousands), and the Baylor study results due soon (apparently this is also going to state the side effects are believed irreversible), then presumably they'll check for the same markers for people suffering from related conditions like post-accutane etc and once they find the same, a ban will be almost immediate I would think, unless Roche pull it first - they'll be keeping a close eye on these studies no doubt.
Can you link the information you found about this said Baylor study?
6 minutes ago, Colinboko said:1 hour ago, tanedout said:I agree, I think fortunately it won't be too much longer. It's likely to start with Propecia etc as those guys are much more organised and better funded with theMelcangi and Harvard studies already done (some of the guys suffering with PFS have personally donated 10's of thousands), and the Baylor study results due soon (apparently this is also going to state the side effects are believed irreversible), then presumably they'll check for the same markers for people suffering from related conditions like post-accutane etc and once they find the same, a ban will be almost immediate I would think, unless Roche pull it first - they'll be keeping a close eye on these studies no doubt.Can you link the information you found about this said Baylor study?
The results of the study are not out yet, but due soon according to discussions on forums. Search the forums on propeciahelp, solvepfs, swolesource etc if you want more info
Wouldnt banning isotretinoin even the generic version by default indicate that its too unsafe to use?
You & I know it is unsafe but a complete ban might open them up to further lawsuits, I dare say the generic version exits as it kinda protects Roche from more people trying to sue them for lesser issues than say bowel cancer. I can think of so many reasons to sue them - eye floaters, hair loss, sore joints, light sensitivity, depression - all are unacceptable 20 years after taking it, and I was never told about these things.
Pharmaceutical companies sure do have some power, their morals though are disgusting to say the least.....profits before people is their moto!
Does anyone thinks this goes far enough?
The update will not state that the sexual sides, if they occur, will be longterm orpermanent.
It will not state that doctors don't know how to fix the sexual sides caused by accutane.
This is why you all need to report your sides