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On 9/7/2016 at 6:50 PM, Gladiatoro said:http://www.naturalnews.com/055200_water_hydration_disease_prevention.htmlDr. Bremners focus is on Accutanes effect on the brain and it makes sense that he would not have much interest i n sexual side effects alone. Nevertheless, he is currently making a movie parodying his clash with Roche that is to be released in the next year: The Goose That Laid the Golden Egg. He is on our side and we can hopefully share a mutually beneficial alliance with him. When that movie comes out, it will give us an opportunity to make some noise again.
Same with Dr. Healy. He is on our side. He believes those of us with sexual dysfunction from Accutane suffer from a form of PSSD, but can only do so much to help. He has done quite a bit to publicize the horrors of drug side effects and featured several stories about Accutane, Propecia, SSRIs, and Lupron on the RxISK site
Though I agree that Omega's in some suffers have had benefits, I caution as some have had the reverse effect. Which was highly noted on the old ragfourm and for the love of god do not take fish oil with cod liver oil. You may feel good at first, but trust me the you will feel the after math.
Hope all is well,
Jen
13 hours ago, Dubya_B said:On September 7, 2016 at 4:50 PM, Gladiatoro said:http://www.naturalnews.com/055200_water_hydration_disease_prevention.htmlDr. Bremners focus is on Accutanes effect on the brain and it makes sense that he would not have much interest i n sexual side effects alone. Nevertheless, he is currently making a movie parodying his clash with Roche that is to be released in the next year: The Goose That Laid the Golden Egg. He is on our side and we can hopefully share a mutually beneficial alliance with him. When that movie comes out, it will give us an opportunity to make some noise again.
Same with Dr. Healy. He is on our side. He believes those of us with sexual dysfunction from Accutane suffer from a form of PSSD, but can only do so much to help. He has done quite a bit to publicize the horrors of drug side effects and featured several stories about Accutane, Propecia, SSRIs, and Lupron on the RxISK site
Why are you quoting one of my statements from another forum verbatim and linking it to a totally unrelated page on naturalnews?
Why not , people like the info . And the unrelated page is actually related to our condition as we are all suffering from chronic cellular dehydration after isotretinoin exposure .
QuoteWhy not , people like the info . And the unrelated page is actually related to our condition as we are all suffering from chronic cellular dehydration after isotretinoin exposure .
Just wondered why you did it. Noticed an increasing number of people taking other's words and using them as their own in recent years. Out of context too. Not a big deal, really
I re-read the better part of these 400+ pages and at this point Im convinced that a significant issue is that there remains a very high and toxic amount of vit A in our bodies. Ive tried to grasp the logic behind which people would eat more vit A in the hopes of getting better, and it makes absolutely no sense to me.
I took accutane from August 29th 2011 to Feb 5th 2012, or a total of 5 months. The pills were 20mg from recollection. Might have been 40mg, but lets go with 20mg. 1 IU of vit A is = to 0.3ug Retinol Equivalent. A 20mg pill per day was 66666 IU. Over 5 months, I ingested 9,999,900 IU of vit A in its animal form. There is no known deficiency of vit A in developed countries. Vit A is fat soluble and therefore keeps accumulating. With a RDA of 3000IU, it would take 3333 days or over 9 years to use up the whole dose, assuming 0 vit A is ingested during this whole time, and also assuming the body even uses that much vit A.
Put another way, lets say youve accumulated a lot of fat around your body throughout the years. A pound of fat is 3500 calories. Lets say you burn 2500 calories a day. If it took you 3333 days to get rid of all your fat, that would make you 2380lbs heavy.
We might not be able to fix the way Accutane might have transformed our DNA for worse through epigenetics. We might not fix our telomeres length right away. But Im sure we can clear a bit of this insane amount of vit A. Im inclined to believe that the reason some people suffer more than others is that we have deficient methylation & detoxification pathways. Our bodies are therefore not able to properly clear this toxic compound.
I had tried Calcium D Glucarate back in sept 2014, a total of 30x500mg. It was expensive and I was barely taking a pill a day. I recall it helping me a bit, but barely. I now know more about the supplement. Even wikipedia shows this supplement as helping to clear and regularize retinoids. Bulletproof recommends 3-4.5g a day for people with cancer. Studies on rats were (from memory) in equivalent doses of up to 75g a day. There is no known toxicity with this supplement as it exits the body within 5 hours.
Ive been trying ~3g a day for the past 10 days and the weirdest things have been happening to me. Crazy bouts of acne. Feeling super good. Insanely good night vision. Eyes no longer dry. Parts of my skin becoming much more oily than anytime in these past 4+ years and a weird feeling of peeing something very caustic in the hours following ingestion of this supplement. That might be placebo. This might not be caused by Vit A being flushed. I might be crazy. Honestly, I dont know.
Heres my question though; has anyone here dosed high amounts of Calcium D Glucarate for an extended period of time? What were the results? Would you mind trying, knowing this is one of the safest supplement that has been recommended for post-Accutane sufferers? Ill be trying more of this supplement along with a couple others (as I learn about them) in the hopes of clearing every bit of vit A in my body.. but Im feeling really good about this. This is the first time Ive had actual, legitimate hope.
Vitamin A toxicity
The acute and chronic toxic effects of vitamin A - indicator of retinoid toxicity is percent retinyl esters (animal version) >10%. Vit A has been proven to accumulate in liver and fat cells, and maybe other organs too. Serum vit A level is no indicator of toxicity because of this.
https://en.wikipedia.org/wiki/Hypervitaminosis_A - very well detailed explanation
National Institute of Health - Vit A report - more info regarding vit A as a toxin
https://ggenereuxblog.wordpress.com/2015/02/12/eca/ - Is probably the most complete post on the concept of vit A toxicity. Definitely read.
Going to try again!!!
Has anyone seen Accuity's youtube video?
It's so impressive that Accuity has been honest and open about this.
I hope you will all give your comments and lend your support.
Anyone else brave enough to inform the public of our plight. It may well be that any researchers out there may be forthcoming when they see
this or maybe other videos that are out there. We just got to make sure we all hear about it when they do; I would
rather they come to us and not to individuals that don't know to share.
I am going to ask once again that you all reach out to anyone that you think might help us to get some research going.
I have tried to targeted anyone who has written a article on accutane: asking if they will research, what info they can share and If they know of anyone that can help. Give them your history and a list of your side effects. Sarah Bailey(Bath uni) is someone I approached many month ago for instance.
For anyone who hasn't already I suggest you make contact with Doug Bremner and David Healy. Please be respectful - these men are very busy.
Some one will start logging these emails and act if they receive enough of them.
Reach out to anyone you know that is a doctor/medic or researcher (hospitals or universities). There must me thousands of young trainee researchers or doctors who are looking for areas they can research - even this might kickstart something; students are open minded and bring fresh ideas. Any ideas for raising funds - get your ideas into action and share them.
Share you responses, just be aware of privacy laws - we don't want to alienate anyone. Private message Dubya or Accuity if need be - I am sure they will liaise with anyone who shows an interest; so pass any good responses over to them if you need to.
http://www.arthritisresearchuk.org/research.aspx?gclid=CJuM98fZg88CFfQW0wodrHUMAA
https://www.genome.gov/10001204/specific-genetic-disorders/
These are some of the people I might reach out to.
There are at least 4 organisations in the US that invite you to share your worries with them. They are mostly genetic but you never know if they might end up agreeing to help us one they , especially if they understand how desperate our plight is.
I will post these organisations details in the next couple of days when I can track them down again - you may find them yourselves.
Remember what we are trying to do here; we are trying to kickstart research just like PFS. There is power in numbers and everyone needs to do their bit - it is time for action.
Also I think it is time for a re-cap on everyone's history and side effects of accutane. We could direct anyone to a certain page onwards where they would have many stories to go by. Dubya's story about his crash for instance is perfect - Maybe he will post first and then you can all follow.
You can keep it simple by just posting dosage and duration. List of side effects, blood test results, time taken to recover from some or all sides and a brief description of your suffering. Post your videos on here; Acuity has given his permission for me to post his and I am sure Indigo wouldn't mind either.
Does anyone know about copyright infringement? We don't want to create any problems!
It may take a while to get this research going an I know it all seems hopeless but we have to make a start and be persistent and positive.
thanks and good luck
Sam
A new topic has been started 'The quest to cure post accutane sexual dysfunction'.
Please, in addition to anything you post here; for anyone suffering sexual sides please post there as well.
I hope the moderators delete all unwanted, ignorant comments but these should all be ignored anyway.
Thanks guys.
"You know I've seen a lot of people walking around with tombstones in their eyes. But the pusher don't care if you live -- or you die. God damn the pusher man (written by Hoyt Axton, sung by Steppenwolf, 1969)."
This is sadly the truth because in reality as I have found out after extensive research it's all LIES , the whole allopathic system is CORRUPT to the core.
How can you sell a drug if you don't invent the illness first , that is the question . Standard treatment after isotretinoin therapy is SSRI's yeah more #$%ing drugs to treat the side effects of another drug lol... I really have to laugh now , but it's true .
Sorry to harp on.
I guess most of you live in a country where you have the 'freedom to information act'
Please write to your local health authority asking for all reported complaints made by people who have taken accutane.
As far as I know this information is free.
How bloody amazing would it be if we could prove that some dermatologists have been alerted by their own patients about the
side effects of accutane but but have blatantly continued to prescribe it.
Many doctors have had people in their offices complaining of side the side effects of this drug and what have they done about it.
Have any of them raised a flag and voiced their concerns.
Did any of you know that doctors became aware of PFS because of the amount of young men complaining of the side effects and their belief that it was connected to propecia/finasteride. I believe Dr Irwig was one of these doctors and he started reporting his finding which eventually gave PFS some credibility. I might add that many doctors do not believe in PFS(b*******)
I also think that the sexual sides of accutane mostly go unreported because of the age of boys/men that take accutane compared to PFS
sufferers. Being that much younger they are more inexperienced, embarrassed, ashamed and downright traumatised.
Once again Dubya will testify to this and his handling of things in the early days.
So please everyone report you sides to the FDA and other know public health organisations.
Men young and old, go back to your doctors and tell them all you side effects and your belief that it relates to accutane.
Ask them to convey your beliefs to the relevant bodies and ask for a response.
This really isn't a lot to ask of every single one of you.
1) Freedom of info act
2) Report you sides
4) Be brave and report all your sides to your doctors and get then to report your concerns and ask for a response.
You can send all the info to me by email and we will one day get help/research into this.
That's a promise!!
Please guys we all need to this this.
Thanks
Sam
27 minutes ago, hatetane said:Sorry to harp on.
I guess most of you live in a country where you have the 'freedom to information act'
Please write to your local health authority asking for all reported complaints made by people who have taken accutane.
As far as I know this information is free.
How bloody amazing would it be if we could prove that some dermatologists have been alerted by their own patients about the
side effects of accutane but but have blatantly continued to prescribe it.Many doctors have had people in their offices complaining of side the side effects of this drug and what have they done about it.
Have any of them raised a flag and voiced their concerns.Did any of you know that doctors became aware of PFS because of the amount of young men complaining of the side effects and their belief that it was connected to propecia/finasteride. I believe Dr Irwig was one of these doctors and he started reporting his finding which eventually gave PFS some credibility. I might add that many doctors do not believe in PFS(b*******)
I also think that the sexual sides of accutane mostly go unreported because of the age of boys/men that take accutane compared to PFS
sufferers. Being that much younger they are more inexperienced, embarrassed, ashamed and downright traumatised.Once again Dubya will testify to this and his handling of things in the early days.
So please everyone report you sides to the FDA and other know public health organisations.
Men young and old, go back to your doctors and tell them all you side effects and your belief that it relates to accutane.
Ask them to convey your beliefs to the relevant bodies and ask for a response.
This really isn't a lot to ask of every single one of you.1) Freedom of info act
2) Report you sides
4) Be brave and report all your sides to your doctors and get then to report your concerns and ask for a response.You can send all the info to me by email and we will one day get help/research into this.
That's a promise!!
Please guys we all need to this this.
Thanks
Sam
I have already reported my most dangerous side effect possibly life threatening at times when it flairs up , yes it's pseudo tumor and as I have often mentioned it's a WELL documented side effect directly linked to accutane. FACT.
On 9/9/2016 at 4:04 PM, Kynarr said:Ive been trying ~3g a day for the past 10 days and the weirdest things have been happening to me. Crazy bouts of acne. Feeling super good. Insanely good night vision. Eyes no longer dry. Parts of my skin becoming much more oily than anytime in these past 4+ years and a weird feeling of peeing something very caustic in the hours following ingestion of this supplement. That might be placebo. This might not be caused by Vit A being flushed. I might be crazy. Honestly, I dont know.
Like you, I tried calcium d glucarate awhile back, but i took only a pill a day. I noticed a small change, but nothing that made me stick with it. Since you posted this, the last two days i've been taking closer to your dose and am feeling a lot better than before.
What other ways are there to get excess vitamin A out of the body? I remember people saying saunas helped. Would vitamin d help?
On 9/9/2016 at 6:04 PM, Kynarr said:We might not be able to fix the way Accutane might have transformed our DNA for worse through epigenetics. We might not fix our telomeres length right away. But Im sure we can clear a bit of this insane amount of vit A. Im inclined to believe that the reason some people suffer more than others is that we have deficient methylation & detoxification pathways. Our bodies are therefore not able to properly clear this toxic compound.
I had tried Calcium D Glucarate back in sept 2014, a total of 30x500mg. It was expensive and I was barely taking a pill a day. I recall it helping me a bit, but barely. I now know more about the supplement. Even wikipedia shows this supplement as helping to clear and regularize retinoids. Bulletproof recommends 3-4.5g a day for people with cancer. Studies on rats were (from memory) in equivalent doses of up to 75g a day. There is no known toxicity with this supplement as it exits the body within 5 hours.
Ive been trying ~3g a day for the past 10 days and the weirdest things have been happening to me. Crazy bouts of acne. Feeling super good. Insanely good night vision. Eyes no longer dry. Parts of my skin becoming much more oily than anytime in these past 4+ years and a weird feeling of peeing something very caustic in the hours following ingestion of this supplement. That might be placebo. This might not be caused by Vit A being flushed. I might be crazy. Honestly, I dont know.
2 hours ago, QuietSoldier said:Like you, I tried calcium d glucarate awhile back, but i took only a pill a day. I noticed a small change, but nothing that made me stick with it. Since you posted this, the last two days i've been taking closer to your dose and am feeling a lot better than before.
Those are wonderful news, please keep us informed along the road. I read the articles ofyour post and it makes a lot of sense, it answers many things.
I remenber that Anonyy mentioned taking lots of Kombucha during his recovery time, well, look at that:
It has been hypothesized that kombucha can increase glucuronidation in the body after ingestion, either directly by providing dietary glucuronic acid[7]or secondary to inhibiting the-Glucuronidaseenzyme (which hydrolyzes the bond between glucuronide and its conjugation target).[6]D-saccharic acid 1,4-lactone (saccharolactone) is a competitive inhibitor of-Glucuronidasewith an IC50of 3.6M[11]and exerts complete inhibition at 1mM.[12]Fecal-Glucuronidaseis inhibited in both healthy controls and in subjects with colon cancer (who have elevated-Glucuronidaseconcentrations[13]) at a concentration of 30-150g/mL.[14]
The inhibition of-Glucuronidaseand supposed augmentation of glucuronic acid's conjugation ability seen with saccharolactone is thought to also underly the 'detoxifying' anticancer properties of kombucha by facilitating the elimination of toxic substances from the body,[15]similar to the mechanism ofCalcium-D-Glucarate.
The 'detoxifying' properties of kombucha refer to the ability of some acids produced during the fermentation process to increase glucuronidation in the human body, which is involved in eliminating some drugs and xenobiotics from the body by conjugating them.
I deeply recommend everyone here to read this article in particular:
https://ggenereuxblog.wordpress.com/2015/02/12/eca/
Thisone is from another guy that got screwed after accutane, itdoes notaddress to vitamin a, but he also claims that calcium d glucarate is helping him.
Quote
Started experimenting with Vit A - absolutely feel worse when supplementing with it. Still can't understand why some doctors put tane patients on it though whenthey suffered side effects!!??
Vit E would make more sense to combat Vit A toxicity - that's what I've read anyway. Still have some Calcium D Glucarate, might get back on it as I gave up on it pretty quickly last time!
That YouTube video about tane is prob correct in how the body processes it, I think the prob some of us face is that the longer the side effects go on, the harder it is to come out of them, the body goes into some sort of toxic shock that's hard to break free of. We can call on doctors and research all we want, I'd say we suffer from Vit A toxicity BUT the confusing thing is all tests check out ok with blood work etc.
Even though I'm not lactose intolerant I'm thinking of coming off dairy - the amount of Vit A in it is prob way too much for me.
I love my coffee but might need to start drinking espressos and cancel out the milk.
Hello!
I've been reading on acne.org and the rosacea one for some time now. About two years ago I took accutane at about 60 mg/day for around 7 months. Bad, I know. I had no idea at the time. Luckily, my side effects are not as bad as most people with lingering problems, but the ones I do have bother me. I am hoping someone has experience with the problems I have or remembers something from one of these 419 pages or another forum that they can use to help me. I still have dry eyes, but it's not terrible. My face is just a touch oily, but somehow very dry at the same time. I use a good moisturizer but... I also have a very red face and my nose and cheeks flush pretty bad. My face is also extremely shiny. I had none of these problems before accutane. Anyone have any advice or experience with these side effects? Particularly the red face and flushing. I would be extremely grateful and appreciative!!!!! Thank you.
16 hours ago, Gladiatoro said:17 hours ago, hatetane said:Sorry to harp on.
I guess most of you live in a country where you have the 'freedom to information act'
Please write to your local health authority asking for all reported complaints made by people who have taken accutane.
As far as I know this information is free.
How bloody amazing would it be if we could prove that some dermatologists have been alerted by their own patients about the
side effects of accutane but but have blatantly continued to prescribe it.Many doctors have had people in their offices complaining of side the side effects of this drug and what have they done about it.
Have any of them raised a flag and voiced their concerns.Did any of you know that doctors became aware of PFS because of the amount of young men complaining of the side effects and their belief that it was connected to propecia/finasteride. I believe Dr Irwig was one of these doctors and he started reporting his finding which eventually gave PFS some credibility. I might add that many doctors do not believe in PFS(b*******)
I also think that the sexual sides of accutane mostly go unreported because of the age of boys/men that take accutane compared to PFS
sufferers. Being that much younger they are more inexperienced, embarrassed, ashamed and downright traumatised.Once again Dubya will testify to this and his handling of things in the early days.
So please everyone report you sides to the FDA and other know public health organisations.
Men young and old, go back to your doctors and tell them all you side effects and your belief that it relates to accutane.
Ask them to convey your beliefs to the relevant bodies and ask for a response.
This really isn't a lot to ask of every single one of you.1) Freedom of info act
2) Report you sides
4) Be brave and report all your sides to your doctors and get then to report your concerns and ask for a response.You can send all the info to me by email and we will one day get help/research into this.
That's a promise!!
Please guys we all need to this this.
Thanks
SamI have already reported my most dangerous side effect possibly life threatening at times when it flairs up , yes it's pseudo tumor and as I have often mentioned it's a WELL documented side effect directly linked to accutane. FACT.
Is pseudo tumor on the warning leaflet inside the packet? If as you say it is a well documented side effect then it should be listed in the packet.
It may well be, it is not one of the side effects that I have looked into. But this is my point, if we can't get accutane banned we must at least assure that every side effect that we know and believe is caused by this drug is included in the info leaflet in the packet.
We have a right to be informed about ALL the possible side effects.
If you accessed freedom of information and found out that many had reported the same unlisted side effect as you - this would give us something to shout about!
When you report you should ask for feedback.
Many thanks
On 9/11/2016 at 2:18 AM, Gladiatoro said:On 9/11/2016 at 1:46 AM, hatetane said:Sorry to harp on.
I guess most of you live in a country where you have the 'freedom to information act'
Please write to your local health authority asking for all reported complaints made by people who have taken accutane.
As far as I know this information is free.
How bloody amazing would it be if we could prove that some dermatologists have been alerted by their own patients about the
side effects of accutane but but have blatantly continued to prescribe it.Many doctors have had people in their offices complaining of side the side effects of this drug and what have they done about it.
Have any of them raised a flag and voiced their concerns.Did any of you know that doctors became aware of PFS because of the amount of young men complaining of the side effects and their belief that it was connected to propecia/finasteride. I believe Dr Irwig was one of these doctors and he started reporting his finding which eventually gave PFS some credibility. I might add that many doctors do not believe in PFS(b*******)
I also think that the sexual sides of accutane mostly go unreported because of the age of boys/men that take accutane compared to PFS
sufferers. Being that much younger they are more inexperienced, embarrassed, ashamed and downright traumatised.Once again Dubya will testify to this and his handling of things in the early days.
So please everyone report you sides to the FDA and other know public health organisations.
Men young and old, go back to your doctors and tell them all you side effects and your belief that it relates to accutane.
Ask them to convey your beliefs to the relevant bodies and ask for a response.
This really isn't a lot to ask of every single one of you.1) Freedom of info act
2) Report you sides
4) Be brave and report all your sides to your doctors and get then to report your concerns and ask for a response.You can send all the info to me by email and we will one day get help/research into this.
That's a promise!!
Please guys we all need to this this.
Thanks
SamI have already reported my most dangerous side effect possibly life threatening at times when it flairs up , yes it's pseudo tumor and as I have often mentioned it's a WELL documented side effect directly linked to accutane. FACT.
Is pseudo tumor on the warning leaflet inside the packet? If as you say it is a well documented side effect then it should be listed in the packet.
It may well be, it is not one of the side effects that I have looked into. But this is my point, if we can't get accutane banned we must at least assure that every side effect that we know and believe is caused by this drug is included in the info leaflet in the packet.
We have a right to be informed about ALL the possible side effects.
If you accessed freedom of information and found out that many had reported the same unlisted side effect as you - this would give us something to shout about!
When you report you should ask for feedback.
Many thanks
On 9/11/2016 at 6:33 AM, QuietSoldier said:Like you, I tried calcium d glucarate awhile back, but i took only a pill a day. I noticed a small change, but nothing that made me stick with it. Since you posted this, the last two days i've been taking closer to your dose and am feeling a lot better than before.
What other ways are there to get excess vitamin A out of the body? I remember people saying saunas helped. Would vitamin d help?
Vit D is essential. Most accutane victims have low Vit D.
You have been on this forum for a few years - how can you not know this?
Have you had any testing done?
[Edited link out]
Anyone fancy some cake?
On 9/11/2016 at 4:15 PM, helpmeoutbuddies11 said:Hello!
I've been reading on acne.org and the rosacea one for some time now. About two years ago I took accutane at about 60 mg/day for around 7 months. Bad, I know. I had no idea at the time. Luckily, my side effects are not as bad as most people with lingering problems, but the ones I do have bother me. I am hoping someone has experience with the problems I have or remembers something from one of these 419 pages or another forum that they can use to help me. I still have dry eyes, but it's not terrible. My face is just a touch oily, but somehow very dry at the same time. I use a good moisturizer but... I also have a very red face and my nose and cheeks flush pretty bad. My face is also extremely shiny. I had none of these problems before accutane. Anyone have any advice or experience with these side effects? Particularly the red face and flushing. I would be extremely grateful and appreciative!!!!! Thank you.
Iodine deficiency can cause dry eyes and apparently most people today are deficient.
Iodine can be dangerous in high dosages. I don't think it is easy to measure iodine deficiency although some recommend a home test that you might like to try.
Make sure you get your eyes tested and mention you took accutane.
https://www.drugwatch.com/accutane/side-effects.php
Accutane Side Effects
A A
What Is Accutane? Its Uses and InteractionsAccutane Side Effects
Accutane is effective at controlling serious cases of acne, but it also comes with serious side effects like Crohn's disease and depression.
Accutane was created by Roche Pharmaceuticals and approved by the U.S. Food and Drug Administration (FDA) in 1982. The drug is used to treat severe acne in people older than 12, and teenagers are its primary users. Treatment can last up to six months and may be repeated if acne returns.
Unfortunately, Accutane is linked to a series of serious side effects, including bowel diseases like Crohns disease, liver damage, depression, and miscarriage and birth defects if taken during pregnancy.
In fact, women of childbearing age are required to enlist in a special pregnancy prevention program before beginning Accutane treatment. Because of these injuries, more than 7,000 lawsuits have been filed against Roche Pharmaceuticals.
Roche stopped making Accutane in 2009, but generic versions of Accutane, known as isotretinoin, are still available.
Side Effects
Doctors prescribe Accutane when other acne treatments fail. Because serious cases of acne can be such a physical and social burden, patients may be willing to tolerate some of the common side effects that come with Accutane use, including dry skin, headaches and cold-like symptoms.
A less-common side effect of the drug is PSEUDO TUMOR benign intercranial hypertension. This is a condition in which the brain acts as though there is a tumor when there is not. It can lead to blindness. Early signs of pseudotumor cerebri include headache, nausea, vomiting and visual disturbances.
Birth Defects
About half of Accutane users are women of childbearing age, making birth defects associated with Accutane use a significant concern. As of 2002 the year generic Accutane was approved the FDA had received reports of 172 babies born with a congenital defect or anomaly after maternal use of Accutane. From 1982 to 2006, more than 2,000 isotretinoin users became pregnant, resulting in many spontaneous or elective abortions.
The pregnancy prevention programs initiated by Roche seek to educate patients about taking measures to ensure that women of child-bearing age do not become pregnant while taking Accutane and that they are aware of the risk of birth defects. However, these programs do not completely eliminate the occurrences of birth defects from Accutane.
Roche has used the SMART program and the iPLEDGE program. The SMART program required patients to sign consent forms, watch informational videos, take a pregnancy test and use two forms of birth control. The program was not deemed effective, so in 2006 iPLEDGE was developed. This program required pregnancy tests from doctors offices and patient registration by computer.
A study completed in 2011 on Kaiser Permanente, California health care patients revealed that iPLEDGE did not significantly decrease fetal exposure to Accutane. The rate of fetal exposure was similar with both programs an average three exposures for every 1,000 patients. The type of fetal danger resulting from exposure to Accutane is alarming, ranging from causing miscarriages to babies born with slits where ears should be.
Since 1985, Accutane has carried a black-box warning, the FDAs most serious warning, detailing birth defect risks. The warning states: Accutane must not be used by female patients who are or may become pregnant. There is an extremely high risk that severe birth defects will result if pregnancy occurs while taking Accutane in any amount.
The boxed warning also lists possible birth defects that could result from taking Accutane, including:Skull abnormalitiesEar abnormalities
Facial dysmorphiaCleft palate
Eye abnormalitiesCentral nervous system abnormalities
Thymus gland abnormalityCardiovascular abnormality
Parathyroid hormone deficiencyLower IQ
Gastrointestinal Disorders
Gastrointestinal disorders are characterized by intermittent symptoms and remission. The intestines can become inflamed and may be seriously damaged. Treatments vary based on the severity of symptoms and range from medication to bowel removal.
There are two types of gastrointestinal disorders that Accutane has been linked to: Crohns disease and ulcerative colitis.
Crohns and ulcerative colitis manifest themselves differently and affect different parts of the intestinal tract. They share some symptoms:Weight lossMalaise
Abdominal painFever
Rectal bleedingBloody diarrhea
The number of cases of gastrointestinal disorders associated with Accutane use has continued to grow over the years. From 1997 to 2002, there were 85 cases of Inflammatory Bowel Disease (IBD) associated with isotretinoin use, but the exact connection was not confirmed. In 1999, The American Journal of Gastroenterology published a letter to the editor asserting a possible connection between isotretinoin and IBD. Another study published in the same journal in 2005 reviewed 85 cases of IBD and found that Accutane was a possible trigger for the disease. From 2003 to 2011, the FDA adverse event database received 266 cases of IBD associated with isotretinoin use.
Crohns Disease
Crohns is an autoimmune disorder, meaning that the bodys immune system attacks healthy body tissues. The disease often affects the small bowel and the beginning of the colon, but can also affect any part of the gastrointestinal tract. There is no cure for Crohns, but people may experience asymptomatic periods between flare-ups.
People with severe cases of Crohns may experience pain and bleeding during bowel movements, caused tears in the lining of the anus. Other complications include abscesses, inflammation of joints, thickening of the intestinal wall, and possible surgery to remove the entire colon.
Ulcerative Colitis
Ulcerative Colitis (UC) often starts in the rectal area and progresses to the colon. The lining of the colon can become inflamed and develop ulcers that produce pus or mucous. Around half of people with UC experience milder symptoms, such as abdominal pain, blood and pus in stools, diarrhea, fever, rectal pain and weight loss.
People with severe cases of UC often require hospitalization for acute attacks. Repeated attacks cause thickening of the intestinal wall and rectum from scar tissue, which can cause infections. Complications from UC include blood clots, colorectal cancer, massive bleeding, tears in the colon, liver disease, mouth sores and ulcers. The only cure is a removal of the colon.
Liver Damage
Some Accutane users have suffered from irreversible liver damage, which can lead to cirrhosis and require a liver transplant a serious surgery that can be life-threatening. Due to this danger, liver enzyme tests are required prior to beginning Accutane and four weeks after treatment begins. Patients with a history of liver disease should not take this medication. Additionally, alcohol should be avoided during treatment to decrease the risk of liver damage.
In addition to patient reports of liver damage, studies have documented a connection between Accutane and liver damage. In Roches clinical trials, 15 percent of patients treated with Accutane experienced inflammation of or damage to liver cells. In 2006, a research team at the University of California found that 11 percent of 13,772 Accutane patients tested had elevated liver enzymes. When enzymes are elevated, it can indicate that triglycerides and fats have accumulated in the liver, inflammation or that liver cells have died.
Symptoms of liver damage include:FatigueUpper abdominal discomfort
Fluid buildup in the abdomenSwelling of the liver
Jaundice (yellow color in the skin)
Depression and Suicide
Many people have reported depression and suicidal behavior associated with Accutane. From 1982 to 2005, there were reports of 190 suicides by Accutane users. The FDA received so many reports that in 2003 Accutane was one of the top 10 drugs most often associated with depression and suicide attempts, according to the FDAs database of adverse events. While some people who have acne already suffer from depression, there are many reports of depression from patients with no psychiatric history.
Close surveillance of patients by physicians and friends and family can prevent depression symptoms from worsening and keep patients from harming themselves.
Symptoms of depression to be aware of include:AnxietyCrying spells
Loss of interest in activitiesSadness
IrritabilityChanges in appetite
Difficulty concentratingDifficulty sleeping
Poor performance at work or schoolWithdrawal from friends or family
Feelings of worthlessnessActing on dangerous thoughts
HallucinationsThoughts about hurting or killing oneself
Like I often say , the worlds MOST dangerous DRUG .
17 hours ago, TrueJustice said:Started experimenting with Vit A - absolutely feel worse when supplementing with it. Still can't understand why some doctors put tane patients on it though whenthey suffered side effects!!??
Vit E would make more sense to combat Vit A toxicity - that's what I've read anyway. Still have some Calcium D Glucarate, might get back on it as I gave up on it pretty quickly last time!
That YouTube video about tane is prob correct in how the body processes it, I think the prob some of us face is that the longer the side effects go on, the harder it is to come out of them, the body goes into some sort of toxic shock that's hard to break free of. We can call on doctors and research all we want, I'd say we suffer from Vit A toxicity BUT the confusing thing is all tests check out ok with blood work etc.
Even though I'm not lactose intolerant I'm thinking of coming off dairy - the amount of Vit A in it is prob way too much for me.
I love my coffee but might need to start drinking espressos and cancel out the milk.
I think that's the source of misunderstanding among this community. Just because your Vit A blood level appears normal, or low even, does not mean you aren't dealing with vit A toxicity. Vit A is stored in the liver, in fat cells, and other organs too. It seems reasonable that your body would only allow vit A to travel through your blood when it actually uses it. Hence, normal levels for all.
The study below is by far the most complete in that regard. Read it through entirely. It explains why it goes undetected, and which test would allow its detection. I haven't been able to find a way to test for retinyl esters % in Canada. Maybe someone here will have more luck.
The acute and chronic toxic effects of vitamin A - indicator of retinoid toxicity is percent retinyl esters (animal version) >10%. Vit A has been proven to accumulate in liver and fat cells, and maybe other organs too. Serum vit A level is no indicator of toxicity because of this.
As a side note, and this is complete speculation on my part, but I would like to think that post Accutane sufferers have more difficulty building muscles, and store fat much more easily. My logic would be that because fat cells hold vit A, our body desperately wants to accumulate more fat so as to detoxify its organs, mostly the liver.
On 9/7/2016 at 4:14 AM, JosephBuchignani said:> I think a forum would be a great idea. I'm just not sure whether our community is large enough to have fill it. If one was made though, I would contribute
This community leaks like a sieve due to the terrible format, and despite that it's still overcrowded. The flamewar surrounding amar is just the latest example demonstrating that this format is crippled.
There's no shortage of users. What's missing are mods, leaders, people willing to invest in the project's success. Primarily, this means keeping up with the moderation queue and putting out small fires. This prevents "broken window" syndrome, wherein a small amount of entropy encourages everyone to disrespect the platform further.
It's pointless to start a forum without a dedicated mod team, because you'd just have to immediately lock it. Otherwise an entropy debt would build that would discourage any future moderator from accepting the role.
If you don't have any leaders, then you're going to keep flaming amars forever.
I would dedicate my time to being amoderator, if such a site was set up. There needs to be a format where everybody can post, but we can make sub threads based on different ideas rather than just a sea of tangents in the same place that nobody can make head nor tail of. Obviously there needs to be some measures in place to protect against trolling and to keep discussion on topic but also to allow debate to flow, unrestricted.
So you've got one mod. You might have to find a few others.
16 minutes ago, Kynarr said:I think that's the source of misunderstanding among this community. Just because your Vit A blood level appears normal, or low even, does not mean you aren't dealing with vit A toxicity. Vit A is stored in the liver, in fat cells, and other organs too. It seems reasonable that your body would only allow vit A to travel through your blood when it actually uses it. Hence, normal levels for all.The study below is by far the most complete in that regard. Read it through entirely. It explains why it goes undetected, and which test would allow its detection. I haven't been able to find a way to test for retinyl esters % in Canada. Maybe someone here will have more luck.
The acute and chronic toxic effects of vitamin A - indicator of retinoid toxicity is percent retinyl esters (animal version) >10%. Vit A has been proven to accumulate in liver and fat cells, and maybe other organs too. Serum vit A level is no indicator of toxicity because of this.
As a side note, and this is complete speculation on my part, but I would like to think that post Accutane sufferers have more difficulty building muscles, and store fat much more easily. My logic would be that because fat cells hold vit A, our body desperately wants to accumulate more fat so as to detoxify its organs, mostly the liver.
Retinol is stored in the fat cells and the liver. Retinoic acid is stored in the fat cells and the lymphatic system. You're right though serum Vitamin A level is no indictor of Vitamin A toxicity because it only checks the amount of Vitamin A in the bloodstream. It can't pick up retinoic acid specifically, only retinol. Also the body does everything it can by storing the retinoic acid in the fat cells and the lymph to keep in away from the blood.
That totally explains why prolonged rubbing of the skin causes heart palpitations and dizziness. I remember reading
once everything you try on it ( skin ) works better by some dumb derm , I say sure if you want to have a heart attack go for it.
This also explains how some people have remission of acne for years . For me it did NOTHING still get mild acne lol... so what was the point of this poisoning , one derm said it appropriately , it's a controlled poisoning .
That list of side effects is mindbogling. When you're 22 you feel invincible, you think to yourself I won't get any of these unwanted side effects, my skin will clear and I'll have a whole new level of confidence.....how wrong.
Up till about 19/20 years old my parents would've had more involvement in deciding whether I was to go on tane or not - more so my mother I'd say, unfortunately I made this ill informed decision together with my derm at the time. I think if I'd of sat with my Dr and that list was printed off and put in front of me there'd be NO chance I'd of gone on this hideous drug.
Anyone working for Roche in Marketing/Advertising with NO conscience back in the day really had the dream job - targeting young people fed up with acne with a product that has a high percentage for clearing it up - no wonder hundreds of thousands of people went on this shit - you'll do anything for clear skin when you're young right!
I'm 41 and still can't can't get away from acne related issues - how fuckin pathetic......
Hello,
Status: 7 months post-accutane (11,710mg)
Problem: Side effects flare up every few months.
Side effects: Smelly urine, partched lips especially in corners of mouth.
Is it possible that accutane is stored in the body and small amounts are released every so often? My side effects seem to flare up again every so often. The smelly urine happened when I was on accutane and I know it's definitely from the drug.
Thanks
17 hours ago, helpmeoutbuddies11 said:So, how would one go about testing his retinyl esters? Would it yield results?
The only way to specifically isolate the retinoic acid content of the blood would be a High Performance Liquid Chromatography test or a HPLC test for short.