@ Joseph: After a loading phase of three months where you spread the recommended UDCA dose throughout the day you are supposed to take the recommended dose e.g. 1000 mg only before goingto bed at night. I would not recommend getting off and on it all the time, take it continously for an extended period like half a year or longer or not at all.

What's the basis for that recommendation? PDFs?

Great to see a huge piece in the Mail on Sunday warning about the suicides and side effects of Accutane. Tells the story of the documentary producer's son who committed suicide and promotes the documentary he is making that Indigo is featured in.

My Dad read the story and showed me, he wasn't aware of just how bad the drug was before this. Hopefully it will have exposed it to a lot more people as well.

Good job Indigo for helping with this. I'll be watching the documentary when it is on.

Link to the story here: http://www.mailonsunday.co.uk/news/article-2234470/My-happy-son-killed-taking-wonder-cure-acne-Impassioned-warning-father-talented-musician-prescribed-Roaccutane-committing-suicide.html

Wow.

It hurts reading this.

Having met Derek, I know he's the nicest guy you could come across.

Understanding what he's been through... and what this drug put's people through... it's just too much to bear sometimes.

I really can't wait to see the documentary.

8 days.

It's been a LONG time coming.

http://www.bbc.co.uk/programmes/p00xxy87 < You can watch a free preview on this link.

Great to see a huge piece in the Mail on Sunday warning about the suicides and side effects of Accutane. Tells the story of the documentary producer's son who committed suicide and promotes the documentary he is making that Indigo is featured in.

 

My Dad read the story and showed me, he wasn't aware of just how bad the drug was before this. Hopefully it will have exposed it to a lot more people as well.

 

Good job Indigo for helping with this. I'll be watching the documentary when it is on.

 

Link to the story here: http://www.mailonsun...ng-suicide.html

 

Nice one Milano - I'm going to read that article now. And Indigo I'm really pleased for you that you got this chance to take part in it

I've started tracking things in Filemaker which is proving worth its weight in gold. It's a database that augments my memory, which gets foggy during attacks.

I deviated from the pattern and had 2 quarts of chicken stock with herbs and whatnot, no fat. 12 hours later, I had a sinus allergy reaction. 16 hours later, insomnia and gut pain. At 24 hours later, I slept a total of about 15 hours. Wave of depression afterwards lasting another 24 hours. Then done.

Useful data point maybe for those of you trying to make sense of the food vector.

The UDCA loading at meals seems to have cut down on digestive problems greatly.

Has anyone tried Homeopathic remedies?

Im about to srat china 200, Bryonia & nux.

have tried homepathic meds with no luck. It is a lot of trial and error to see what will and will not work. Hopefully it will work for you!

Personally though, I think the focus should be on the liver, gallbladder and colon. So probiotics are great, a liver detox supplement/protector such as milk thistle is good and avoiding too much wheat and dairy will be a good start.

have tried homepathic meds with no luck. It is a lot of trial and error to see what will and will not work. Hopefully it will work for you!

 

Personally though, I think the focus should be on the liver, gallbladder and colon. So probiotics are great, a liver detox supplement/protector such as milk thistle is good and avoiding too much wheat and dairy will be a good start.

 

I think its deeper than just organs its infiltrated all our cells.

Im trying China 200, bryonia & various pilules. Trying to be optimistic.

I hardly touch dairy or wheat Im a fruit, veg & protein eater 98% of the time. i try to keep my diet really simple.

Ive done liver support, cleanses that made me violently sick and put me in hospital, ive done probiotics which made my stomach more sensitive.

http://www.dailymail.co.uk/news/article-2234470/Roaccutane-effects-Warning-father-Jesse-Jones-talented-musician-commited-suicide.html

Story on the the family behind the doco

i have been diagnosed with slight anemia? could this be causing my erectyle dysfunction and less feeling? my pc muscle also feels weak. plz help i had this for 4 months so if i take iron tablets will i be 100% again or?

i have been diagnosed with slight anemia? could this be causing my erectyle dysfunction and less feeling? my pc muscle also feels weak. plz help i had this for 4 months so if i take iron tablets will i be 100% again or?

 

Omg God Yes it can! I know I had only 3% iron in my body after accutane! It can cause a lot of problems such as neuropathy, death, muscle loss, etc.. Take some slow Fe or prescrption iron tabs, with vitamin b12, folate and Vit C or just drink it with OJ and you will feel so much better. Eat a lot of green leafy foods and protien also

Dying for clear skin.

BBC3.

Monday, 26th November 2012.

9PM.

 

x

 

Thanks for the heads up on that indigo i will watch it. Hope you doing well. peace

[Edited link out]

Got invited to do this interview via Skype today.

Was cool.

Also, just got back from Skyfall. So good!

Does anybody here have Skype?

It would be cool to chat some time!

(FireYourDoctor, if you want to add me on there)

Great to see a huge piece in the Mail on Sunday warning about the suicides and side effects of Accutane. Tells the story of the documentary producer's son who committed suicide and promotes the documentary he is making that Indigo is featured in.

 

My Dad read the story and showed me, he wasn't aware of just how bad the drug was before this. Hopefully it will have exposed it to a lot more people as well.

 

Good job Indigo for helping with this. I'll be watching the documentary when it is on.

 

Link to the story here: http://www.mailonsun...ng-suicide.html

 

Yeah, because the mail is well known for high quality journalism........

I can't speak for every doctor but I don't feel mine was ignoring possible side effects or quick to dismiss the possibility of a link between Accutane and mental health problems.

There is a quote in that report : "Prescribing this drug is like playing Russian roulette with peoples lives"- The thing is prescribing / taking ANY drug is "playing Russian roulette" as virtually all drugs can have some severe adverse side effects; the % chance of it happening is extremely small, the problem is that doesn't matter if it happens to YOU. Also, it doesn't take a genius to realise that if you have millions of people taking this drug world wide, and there is a 0.01% chance (or whatever the % is) of a severe side effect, that there are going to be a very large number of people who are affected.

That doesn't necessarily mean the drug is any more 'dangerous' than many other medications. Problem is probably people being given it inappropriately for mild or moderate acne and those not being informed of the risks and monitored properly.

I also think this quote: "Derek warns: "This drug could drive your child to suicide and that risk is too high a price to pay for clear skin" - the problem being that there is also a link with severe acne and depression.........

Looking forward to seeing the BBC program/documentary though.

 

Great to see a huge piece in the Mail on Sunday warning about the suicides and side effects of Accutane. Tells the story of the documentary producer's son who committed suicide and promotes the documentary he is making that Indigo is featured in.

 

My Dad read the story and showed me, he wasn't aware of just how bad the drug was before this. Hopefully it will have exposed it to a lot more people as well.

 

Good job Indigo for helping with this. I'll be watching the documentary when it is on.

 

Link to the story here: http://www.mailonsun...ng-suicide.html

 

Yeah, because the mail is well known for high quality journalism........

 

I can't speak for every doctor but I don't feel mine was ignoring possible side effects or quick to dismiss the possibility of a link between Accutane and mental health problems.

 

There is a quote in that report : "Prescribing this drug is like playing Russian roulette with peoples lives"- The thing is prescribing / taking ANY drug is "playing Russian roulette" as virtually all drugs can have some severe adverse side effects; the % chance of it happening is extremely small, the problem is that doesn't matter if it happens to YOU.Also, it doesn't take a genius to realise that if you have millions of people taking this drug world wide, and there is a 0.01% chance (or whatever the % is) of a severe side effect, that there are going to be a very large number of people who are affected.

 

That doesn't necessarily mean the drug is any more 'dangerous' than many other medications. Problem is probably people being given it inappropriately for mild or moderate acne and those not being informed of the risks and monitored properly.

 

I also think this quote: "Derek warns: "This drug could drive your child to suicide and that risk is too high a price to pay for clear skin" - the problem being that there is also a link with severe acne and depression.........

 

Looking forward to seeing the BBC program/documentary though.

 

I'll pray that you 1) don't have these severe side effects like most of us, here. And 2) That you somehow become more aware that this IS a dangerous drug and that these side effects are real and that the seriousness and actual long-term risks were not adequately discussed with most of us. The only Accutane users without these life-altering effects that I have met, are those who don't realize the damage yet and think that their new state of being is simply part of "growing up" or in some way linked to their acne alone. It's really sad when chemo patients are told time and time again by doctors (supposedly the best and brightest 'healers' among us) that their depression after chemo is caused by the trauma of going through a life or death situation. B.S. dude. The fact is, the FDA and it's counterparts all over the world are filled with people who either came from a job with big pharma, or will end up moving into a job with big pharma. It doesn't take a genius to do that math either!

 

Great to see a huge piece in the Mail on Sunday warning about the suicides and side effects of Accutane. Tells the story of the documentary producer's son who committed suicide and promotes the documentary he is making that Indigo is featured in.

 

My Dad read the story and showed me, he wasn't aware of just how bad the drug was before this. Hopefully it will have exposed it to a lot more people as well.

 

Good job Indigo for helping with this. I'll be watching the documentary when it is on.

 

Link to the story here: http://www.mailonsun...ng-suicide.html

 

Yeah, because the mail is well known for high quality journalism........

 

I can't speak for every doctor but I don't feel mine was ignoring possible side effects or quick to dismiss the possibility of a link between Accutane and mental health problems.

 

There is a quote in that report : "Prescribing this drug is like playing Russian roulette with peoples lives"- The thing is prescribing / taking ANY drug is "playing Russian roulette" as virtually all drugs can have some severe adverse side effects; the % chance of it happening is extremely small, the problem is that doesn't matter if it happens to YOU.Also, it doesn't take a genius to realise that if you have millions of people taking this drug world wide, and there is a 0.01% chance (or whatever the % is) of a severe side effect, that there are going to be a very large number of people who are affected.

 

That doesn't necessarily mean the drug is any more 'dangerous' than many other medications. Problem is probably people being given it inappropriately for mild or moderate acne and those not being informed of the risks and monitored properly.

 

I also think this quote: "Derek warns: "This drug could drive your child to suicide and that risk is too high a price to pay for clear skin" - the problem being that there is also a link with severe acne and depression.........

 

Looking forward to seeing the BBC program/documentary though.

 

Regardless of the journalistic quality of The Mail - if the article (and the documentary) gets parents and acne sufferers to think twice before resorting to this drug then it has done it's job.

The rest of your post isn't even making an argument. You are agreeing that Accutane is dangerous, that it is being over-prescribed and therefore a hell of lot of people are suffering severe side effects including committing suicide. Oh no, don't blame the drug though, these people are just a minor statistic; its to be expected when millions of people are taking it, let's not worry about it.

Its like saying; oh there's this model of airplane that has been found to have a defect that causes it to crash, don't worry though, although there's absolutely loads of them out there it only happens to a small percentage, so let's not concern ourselves; it's bound to happen.

I have to get in here and say this: I have been the victim of suffering rare and severe side effects from a medication. Not Accutane - not even acne related - but that one in a hundred thousand or so people happened to happen to me. There were the normal side effects (acne, weight loss), the less normal but still common side effects (blurred vision) and then the severe ones - shaking so badly that I could not hold a fork to feed myself, muscle and jaw spasms so bad I couldn't talk and could some days barely WALK. It was awful.

And I have a knee-jerk, automatic cringe whenever I hear a friend has prescribed that medication. It. was. HELL. for me. Four months of my life utterly gone and in utter misery. BUT - I have to recognize that I was part of that very smaller number. And my doctor was very upfront with me about the risks, to which I understood. Didn't stop me from regretting being on it - but it helped me realize that it was MY reaction that was bad, not the drug itself.

Accutane is serious business. It's a heavy drug with side effects upon side effects. Education, information, informed risk is key.

I'm glad we have these boards. It helps for people on all ends of the spectrum to share their experiences.

I have to get in here and say this: I have been the victim of suffering rare and severe side effects from a medication. Not Accutane - not even acne related - but that one in a hundred thousand or so people happened to happen to me. There were the normal side effects (acne, weight loss), the less normal but still common side effects (blurred vision) and then the severe ones - shaking so badly that I could not hold a fork to feed myself, muscle and jaw spasms so bad I couldn't talk and could some days barely WALK. It was awful.

 

And I have a knee-jerk, automatic cringe whenever I hear a friend has prescribed that medication. It. was. HELL. for me. Four months of my life utterly gone and in utter misery. BUT - I have to recognize that I was part of that very smaller number. And my doctor was very upfront with me about the risks, to which I understood. Didn't stop me from regretting being on it - but it helped me realize that it was MY reaction that was bad, not the drug itself.

 

Accutane is serious business. It's a heavy drug with side effects upon side effects. Education, information, informed risk is key.

 

I'm glad we have these boards. It helps for people on all ends of the spectrum to share their experiences.

 

Curious, did your side effects go away after the 4 months described? See, with Accutane something very essential about a person is disturbed and destroyed, possibly permanently. Depression, joint pain, digestive disturbances, the list goes on for a while. While I appreciate where you are coming from, in the end you just have no idea what we're dealing with here. Please don't talk about stuff you don't understand first hand. For example, there are about 80,000 chemicals that are in use today in everything from your computer to your mattress. Of these 80,000 only about 200 have been tested by the EPA here in America. Of those 200, 5 were banned outright. So what are the chances of danger from the other 79,800 chemicals, not to mention the long-term effects of the 200 they tested, but not over a long-enough period of time. If I had been given a drug that had serious side effects and then they went away after discontinuation like I had been told by my doctor, I would probably feel dismissive like you about Accutane's dangers. But the fact is that I was told that my side effects would only be temporary, but I took this stuff over 20 years ago and my problems are only getting worse, except for the hard-won research and advances made mostly by sufferers here on the forum (Peace) that have helped to deal with these terrible side-effects. Did you take Accutane? If so, you better wake up. If not, please listen more, talk less, right?

I am hardly dismissive about Accutane's dangers. And no, I've never taken Accutane. I've been around here for....(counts) 7 years now and have read hundreds and hundreds of accounts of Accutane. Lots of people were helped. Lots of people weren't. It does not replace personal experience, but I am qualified to speak on the matter in as far as what I've seen others report - and to lend support (on both sides) when they need it.

I am also saying that I personally understand the frustration of knowing about severe side effects, taking the drug anyways, and suffering them. Abilify, by the way, lists nearly every single mental health possible side effect as Accutane, plus a majority of the physical ones, and a couple of bonus side effects, as well. As far as scale goes - Abilify and Accutane have more in common than just starting with the same letter. Yes, my side effects did go away. Most people who have the kind of side effects I did? Theirs don't. It's permanent.

So I'm not talking out of my ass when giving this support.

Here is a little history on pharmaceutical DRUGS.

Throughout the 20th century the pharmaceutical industry was built and organized with the goal to control the health care system of nations by systematically replacing natural, non-patentable therapies with patentable and therefore profitable synthetic drugs. The architects of the pharmaceutical industry were entrepreneurs and financiers who, from the very beginning of this industry, had defined the human body and the diseases it hosts as their marketplace. As the result of the systematic take-over of the health care system by nationally and internationally operating pharmaceutical corporations, billions of people in almost all countries of the United Nations have been paying trillions of dollars for pharmaceutical drugs that neither prevent diseases nor cure them (by one measure, fully 95% of modern drugs are without proven efficacy, while virtually 100% have proven side-effects).

I am hardly dismissive about Accutane's dangers. And no, I've never taken Accutane. I've been around here for....(counts) 7 years now and have read hundreds and hundreds of accounts of Accutane. Lots of people were helped. Lots of people weren't. It does not replace personal experience, but I am qualified to speak on the matter in as far as what I've seen others report - and to lend support (on both sides) when they need it.

 

I am also saying that I personally understand the frustration of knowing about severe side effects, taking the drug anyways, and suffering them. Abilify, by the way, lists nearly every single mental health possible side effect as Accutane, plus a majority of the physical ones, and a couple of bonus side effects, as well. As far as scale goes - Abilify and Accutane have more in common than just starting with the same letter.

 

So I'm not talking out of my ass when giving this support.

 

Again, I was not told that the side effects could be permanent. Many of us weren't. In fact my doctors are still in denial that there is even a possibility of that fact even when faced with the reality of my condition. It must be difficult for them to admit that the pharmaceuticals that they rely on to "heal" people, are actually more poisonous than anything else. They are afraid of lawsuits, I understand that. But I was not warned. The doctors just didn't even know it themselves. Your drug situation was different, I am sorry but you cannot come here and talk about things you only infer from reading others posts and then make statements about "the broad spectrum". I appreciate your intentions, though. Thanks anyhow.

There does need to be a movement within the medical community to inform patients of the risks of Accutane more fully - something I have never denied.

Simply because I (or you, since I can assume you do not have 100% of the experiences I have had, either) have not had the absolute specific experience you have does not mean I cannot share my own experience and attempt to support you. I would have missed on out years of support had I demanded that only those who had been through exactly what I was talking about try to help - and I imagine the same folks would have missed out on support from others, too.

This is a support forum in which, yes, I can come in here and give support to people, even if I have not personally experienced it. If that were the order of these forums, very few of us would be able to interact outside of a specific forum or two. That'd be a damn shame.

There does need to be a movement within the medical community to inform patients of the risks of Accutane more fully - something I have never denied.

 

Simply because I (or you, since I can assume you do not have 100% of the experiences I have had, either) have not had the absolute specific experience you have does not mean I cannot share my own experience and attempt to support you. I would have missed on out years of support had I demanded that only those who had been through exactly what I was talking about try to help - and I imagine the same folks would have missed out on support from others, too.

 

This is a support forum in which, yes, I can come in here and give support to people, even if I have not personally experienced it. If that were the order of these forums, very few of us would be able to interact outside of a specific forum or two. That'd be a damn shame.

 

And yeah, Accutane might on the surface have "helped" some people. In fact if I had had cancer and taken Accutane for that, I might not have even noticed its long-term effects, in stead attributing them to the trauma of cancer. Read many of the message boards on post-chemo cancer survivors...In a similar way, people with severe cystic acne see the semi-cleared condition and are so grateful that they are unaware of the trade they just made. I appreciate your support.

It's okay. It's a touchy subject - I get plenty of touchy about plenty of things here, too. Is okay.

Yeah, we have had cancer survivors here. Lost one of them to cancer while she was an active member, no less. It was really on hard the community.