Acne.org Products
Let us know when it's up! Maybe we can have individual topics for the things we're trying.
Yes perhaps; but, maybe we should recognize that no one with real life threatening and debilitating side effects is going to Iherb their way out of this, despite protestations to the contrary by self-confessed Google experts. I mean, its only been 30 years with essentially no real inroads made; and, no, liver flushes and colonic irrigations arent inroads into anything tangible except your midsection. The best docs who have had the decency to concede their precious meds can ruin peoples lives (only a handful) have essentially no idea what has transpired. It may be time to accept that we cant dog paddle our way to shore. Perhaps we need a foundation with donations so that real research can begin. At the very least, donations could be used to bolster those amassed by the Propecia group; I understand there was some interest by that group.
you guys are having some great ideas! Put them into action please!! 
I have all the main symptoms that everyone here seems to have but I was wondering about one other that is not mentioned. Towards the end of my accutane course I developed a dull ache in my liver that has lasted almost 10 years since finishing accutane. It comes and goes but is most prevalent when I'm tired, dehyrdated (despite driking tons of water), or occasionally try liver cleansing supplements such as milk thistle or calcium glucorate. Usually when I'm having this problem my skin gets extra pale/ pasty, it breaks out, and I get brain fogged. Sometimes I can even feel the pain on the outside as it prevents me from sleeping on my right side.
Anyone else have this kind of issue? My blood tests have never indicated any sort of problem in all these years. I even had my doctor send me for an unltrasound that was negative. I've just learned to live with it and manage my diet very, very carefully.
Let us know when it's up! Maybe we can have individual topics for the things we're trying.
Yes perhaps; but, maybe we should recognize that no one with real life threatening and debilitating side effects is going to Iherb their way out of this, despite protestations to the contrary by self-confessed Google experts. I mean, its only been 30 years with essentially no real inroads made; and, no, liver flushes and colonic irrigations arent inroads into anything tangible except your midsection. The best docs who have had the decency to concede their precious meds can ruin peoples lives (only a handful) have essentially no idea what has transpired. It may be time to accept that we cant dog paddle our way to shore. Perhaps we need a foundation with donations so that real research can begin. At the very least, donations could be used to bolster those amassed by the Propecia group; I understand there was some interest by that group.
I do agree. Were all pretty screwed. I know Im stuck in my own personal hell between losing my hair and my prematurely aged skin etc etc etc
My hope is that the combination of mustering up enough support between all of us, my work with the change organisation assisting with media exposure as well as a comprehensive website will bring enough attention to our suffering. Research will only be initiated if there is money to be made - which there clearly is not.
I have the Stem cell Foundation also attempting to help us,
Hopefully we wont have to suffer the rest of our lives guys. Strength in numbers. xx
Let us know when it's up! Maybe we can have individual topics for the things we're trying.
Yes perhaps; but, maybe we should recognize that no one with real life threatening and debilitating side effects is going to Iherb their way out of this, despite protestations to the contrary by self-confessed Google experts. I mean, its only been 30 years with essentially no real inroads made; and, no, liver flushes and colonic irrigations arent inroads into anything tangible except your midsection. The best docs who have had the decency to concede their precious meds can ruin peoples lives (only a handful) have essentially no idea what has transpired. It may be time to accept that we cant dog paddle our way to shore. Perhaps we need a foundation with donations so that real research can begin. At the very least, donations could be used to bolster those amassed by the Propecia group; I understand there was some interest by that group.
Research will only be initiated if there is money to be made - which there clearly is not.
I don't think there is 'real' money to be made by those helping the Propecia group, but it is nevetheless happening. I understand that they were able to garner the interest of researchers because of the purported epigenetic root of the problem, which, of course, ties into current interests for that community. They may never get to the 'root cause' or get the money to develop some new drug (another potential set of problems), but they are still taking the best possible fight they can to the ring; and, no one could possibly ask for any more, and that is the point.
Hey all,
So this is a random inquiry. I have take a teaspoon of coconut oil for the past two days and I noticed that I would become very chilly and feel nauseous and get a wicked headache. I have taken the same oil before with no problems. Any ideas? Am I all of a sudden not able to process fat?? I havn't had problems with this before...i've also never combined the coconut oil with the Evening Primrose until these past few days. Appreciate your guys' expert advice!! Seriously, I would go to you guys over my PCP any day...fucking idiot. Anyways...I digress lol
@sdro123
I've heard conflicting theories on what you are experiencing. Some say it's candida dieoff, and before the candida dies, releases mycotoxins that gives you flu-like symptoms. Some say that your liver can't process all of that fat at one time, to which I'd suggest eating coconut oil with something low in protein and fat, like carbs or fruit. Maybe eating a bit less of it.
Read this:
[removed]
Two weeks on the medium/low oxalate diet and I'm starting to get a sense of Jekyll-and-Hyde. Pre-and post-Accutane symptoms are coming together... I'm definitely feeling a sense of "detox", but it's a lot more bearable than last week.
I've been sleeping surprisingly well, but I've still been tired and brain foggy. My hair loss is back in full swing, and I've gotten a couple of tiny pimples on my chin (nothing too bothersome.) My fingertips are peeling and the dandruff is back. The sensitivity in my skin seems to be lessened, especially my eye and scalp itching. No change in my digestion so far. No more chills or joint pain, but I have to urinate a LOT. A couple days ago, I started getting the characteristic cloudy urine and black-speck stool. TMI, I know, but I figured you guys may (?) be interested in when the detox is really beginning to set in.
I found some interesting information:
The reason why taurine may have worked for me for so long is because it reduces absorption of oxalates. Perhaps I ate too many oxalates for it to deal with and that's why it stopped working. I'm on MSM now, which also contains sulfur, so I think that may be a good replacement. I didn't like always having to order taurine online, shipping and all that.
If you eat too much vitamin C, vitamin D, fish oils, or fructose, your body will convert it to oxalates. Maybe that's why my hair loss got worse once I started on vitamin D... and I took extra supplemental C and a multivitamin all throughout my Accutane course.
Vitamin A deficiency may be a cause of crystallization of oxalates. One of the theories going around is that we may be Vitamin A-deficient; plus, deficiency and excess symptoms are the same.
Oxalates are chelators, especially for iron, which I've recently wondered if I have enough of. It's a good thing to knock all possible chelators out of my diet.
If you don't absorb fat very well, calcium will bind with it instead of oxalate. So the oxalate is free to build up in your body... I'm making sure to get more calcium.
Antibiotics will exterminate Oxalobacter formigenes, which is the bacteria in your gut that degrades oxalates, leaving them free to build up.
So I'm really starting to get the feeling that this may be helpful to us. I don't know how, exactly, but I'm working on connecting the dots.
sbowlchica,
It seems like the low oxalate may be helping you, i'd be curious to see how it continues to go for you. What supplements are you taking? and I'm curious for anyone else on here....has anyone tried just not taking ANY supplements to rid their body of crap? Not for the long-term obviously, but for the short-term. I took fish oil for years post-accutane which did help my joints, butttt i think it honestly triggered the hair loss. I'm 9 years out guys and all of a sudden i started having hair loss. You would think it would happen a year or two later, not 9. fucking weird. have not increased my dietary intake of vitamin A either. The only thing that has changed is working a high stress job with little relaxing time....yes i know, i am currently looking...
sbowlchica,
It seems like the low oxalate may be helping you, i'd be curious to see how it continues to go for you. What supplements are you taking? and I'm curious for anyone else on here....has anyone tried just not taking ANY supplements to rid their body of crap? Not for the long-term obviously, but for the short-term. I took fish oil for years post-accutane which did help my joints, butttt i think it honestly triggered the hair loss. I'm 9 years out guys and all of a sudden i started having hair loss. You would think it would happen a year or two later, not 9. fucking weird. have not increased my dietary intake of vitamin A either. The only thing that has changed is working a high stress job with little relaxing time....yes i know, i am currently looking...
I intend to provide weekly updates for you guys so you can have someone who has tested the waters before diving in yourselves. There would be no point to haivng a lot of people doing low ox if it doesn't work. And I'm happy to be the human guinea pig. To be honest, I jumped into low ox without a lot of research and am happy that it's turning out well! (And it's weird that I've been craving dairy recently... calcium binds to oxalates.)
I'm taking a drugstore acidophilus probiotic (I also make sure to eat Greek yogurt every morning, and next time I go to the store, I'm going to look for kefir.) Also evening primrose oil (hormonal acne), MSM (liver detox, hair strengthening), prenatal (prescribed by the doc), and magnesium (helps absorption of calcium).
I haven't tried not taking anything-- I know there are a couple of guys on this forum who have successfully quit supplements and gone paleo-vegan, getting all of their nutrients from fruits and veggies. Connor McElvain, I think? Different things work for different people.
Usually sebum production returns to around pre-treatment levels or just slightly below. I think your skin might remain dry because you were on such an extremely high dose. 40-6mg for 11 months is an unheard of dose. That's much too high so this might be why you have experienced worse side effects than most other users. You should probably redirect your ire from Roche to the doctor who prescribed you such an unusually high dosage course.
Tried peppermint oil, just inhaling it. Definitely improves my mood and mental clarity temporarily. As far as digestion goes, I drink black coffee and eat an apple every morning and the constipation is gone for the day. Not doing Epsom Salts anymore. Still feel sluggish on waking up, I guess that could be thyroid related - I'll have it checked by a radiologist soon. I have been found to have iodine deficiency (28 ug/g creatinine).
I also try to eat less meat and more fruit.
Didn't have any reaction to Vitamin A, Cod Liver Oil, Colostrum etc. yet.
50-100mg Zinc + a pomegranate kickstarts my libido to unknown heights for a day or two
Haven't found anything that consistently helps with the dryness yet. I'll do a whole shave only once a week or so because I'll feel the skin inflammation for hours on end.
I notice my hair looks fuller and the dandruff is gone the day after I eat garlic.
Tried MMS, didn't do anything for me.
Has anyone ever seen this show? In the states it is on in the mornings, one of the lower number channels 9-10am mountain time. Two days ago there was a show on substances that can cause damage that are found around us all the time, or something similar to that. I wrote a letter to Dr. Travis ... who is the head doctor and personally I feel the best chance to hear us out. These people are professionals and handle business in a quality manner. Sort of like Opera, except with a focus on medical issues. Often they help out like 1 to a few people at a time with big projects, and other times it's just informative. But if we can get enough people to write to them, they will listen and even if it doesn't become the sole focus for one of their shows, they may help. One of the four is a dermatologist and at his professional standing there is no way he hasn't heard of these abberant cases from Accutane. However, when you write to them please ensure you do not trash any of the medical professionals that you've seen in the past, because if you do they won't want to help. I know we have had some bad experiences with MDs because it gets personal when a doctor tells you that it's all in your head. Try to forgive them, forget the past, and move forward. I'm thinking if we can get about 20 people to write to them, we got a strong chance of getting a response. It won't lead to a cure overnight, but the exposure will undoubtedly help. We can compile ideas on what we will put in the letters to the show. If we are organized in this effort, I feel confident they will listen. Just go to thedoctorstv.com, and on the upper left side of the screen on the green bar it says "contact the show", scroll down to either send a letter or ask our doctors.
Not to bring you down eric, but The Doctors actually recommended Accutane during a segment they did for a girl with Acne Conglobata (so a case where it is actually warranted). But all they did was mention pregnancy tests and skin dryness. I don't think they will now do a segment on how dangerous it is.
Hi MAJess,
Have you taken accutane before and tried these injections? I'm just curious. I have not been to a derm yet about this issue as it is relatively new. My hair thinned a bit after accutane but now this intense itching I believe is either folliculitis or seb derm...either way...i know it's inflammation leading to itching leading to hair loss. It's like my scalp can't hold on to my hair because it's not strong enough. If you have any more info on this injection that would be great. you from VA? I went to school there!
Just a short update: was trying Epsom salts internally, pretty much overdosed a little nothing major, so I quit, going to start over in 2 weeks at a lower dose.
also going to try fermented cod liver oil. it was recommended to me by someone who I trust, he says it is the most essential supplement for his health and overall well-being. regular cod liver oil has not worked for him.
[Edited link out]
basically CLO will supply your body with vitamine D, A and omega 3. as far as I can most of us are on the same page that at least two of these are very helpful with regards to our situation.
Okay so my hair stylist gave me nioxin shampoo and conditioner for thinning hair....anyone try this crap? seems to be making my scalp worse...i believe it may have harsh chemicals in it making me have sever folliculitis. FUCK.
Yeah nioxin is garbage it's one of the first things I tried. Didn't help at all I was also using the spray in treatment and follicle booster serum. My scalp is so dry I'm scratching off almost a pasty substance and I have dried flakes as well.
The itching is awful. I've tried also - kerastase scalp treatment vials, spray on vitins, organic flower extracts to soothe, spray in protein, conconut oil, nothing has helped my scalp and hair are drier than ever and continue to fall out. I also lose new hairs and they too are growing so dry and wiry. It's unbelievable.
Hi people,
I found this blog and seems very helpful and very informative about the long term side effects of accutane. I thought I would share the wonderful find with you guys.I am still trying to finish reading it. Maybe, you more knowledgeable people can grab something from this and help us solve our long term side effects. Also if you found it informative and interesting, please save it some how in case the url goes down.
[Edited link out]
Here are some excerpts from it:
Accutane induces a severe form of vitamin A toxicity, which is how it reduces acne, reduces cell division
and severely dries out the entire body by effectively slamming shut all of the sebaceous (oil)
glands in the skin and degrading the glycosaminoglycan water-holding protein molecules
collagen, hyaluronic acid, elastin, and chondroitin sulfate in connective tissue everywhere,
leaving the person in a chronically dehydrated hung-over state because the terrain throughout
their whole body has been literally turned into a desert, they are unable to retain moisture
between their cells.
assault on the persons DNA protein transcription mechanisms, some people recover from their
side effects with time, others arent so lucky. And from what I can tell, theres no way of
knowing in advance which group somebody will fall into.
and damages the ability to regenerate water-holding molecules, like the glycosaminoglycan
hyaluronan AKA hyaluronic acid, which holds water hundreds of times its own weight in the
skin and other areas of connective tissue.
Investigative health journalist Bill Sardi published a compelling and insightful report on
Accutane and its long-term side effects titled Accutane: a modern horror story. This report came
out five years ago, so some of the statistics might be outdated, but it is very thorough and well
referenced. One important topic he covers is how oral hyaluronic acid supplementation might
improve the extreme dryness of tissues caused by Accutane. Former Accutane users suffering
the chronic latent effects of severe systemic dryness of their skin, eyes, lips, mouth, and nasal
passage should consider taking oral hyaluronic acid supplements. Hyaluronic acid is the
scaffolding that holds the human body together. It cushions joints and nerves, dilutes toxins and
serves as a barrier against the spread of disease.
Oral hyaluronic acid (HA) supplements are relatively new. They offer hope for restoration of
tissues adversely affected by Accutane. Just 1000 milligrams can hold or gel 6 liters of water in
the body. Oral hyaluronic acid supplements have been reported to lessen or eradicate joint pain
in cases of osteoarthritis, eliminate back pain caused by swollen vertebral discs, refill skin tissues
to the point of reduction of wrinkles, cause floaters in the eyes to disappear, and improve
thickness and luster of hair. The production of hyaluronic acid may be impaired in Accutane
users. Supplementation may be beneficial.
I was on 40 mg but I stopped treatment only a month into it because of the side effects, which where:
dry lips
dry eyes
eczema on my right arm
severe back pain
Lower sex drive (and sex just didn't feel nearly as good anymore)
2 months post accutane, dry lips and eyes are gone, the eczema on my arm is fading, sex drive is slowly returning, however the back pain is still there, it's not as severe as it was when I was on accutane, but I still feel like an old lady getting out of bed every morning...anyone also experienced this? Hopefully it'll eventually go away...
I was on 40 mg but I stopped treatment only a month into it because of the side effects, which where:
dry lips
dry eyes
eczema on my right arm
severe back pain
2 months post accutane, dry lips and eyes are gone and the eczema on my arm is fading, however the back pain is still there, it's not as severe as it was when I was on accutane, but I still feel like an old lady getting out of bed every morning...anyone also experienced this? Hopefully it'll eventually go away...
Good thing you were only on it a month and got side effects soo early in treatment. You should be fine can't say for sure, but pretty sure esspecially since some of your side effects have gone or faded.
As for back pain if it is lower pain then I suggest crunches, streching, some Vit D ( a good brand). Accutane is known to effect Vit D levels as Accutane is a derivative of Vit A and Vit A & D compete. Try to stay away in retinol enriched foods etc... Beta should be fine! Hope this helps
Okay so my hair stylist gave me nioxin shampoo and conditioner for thinning hair....anyone try this crap? seems to be making my scalp worse...i believe it may have harsh chemicals in it making me have sever folliculitis. FUCK.
You can check on this thread! I think about half way through or futher back...I can't remember, but there's info on nixion & kenalog shots in the scalp! Interesting you mention gluten causing more issues with your scalp etc... Did they check you for Celiac, not that it matters, many after accutane have gluten senstivity! Hope all is well