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Honestly, I wake up with dry mouth every day. It definitely feels unhealthy. This is 8 years post accutane use.
There seems to be some consensus that a low vitamin A diet improves things but we havent really been able to gather statistical data on how a low vitamin A diet affects adrenals and hormones so we are taking a bit of a shot in the dark with the low vitamin A diet. We are going to have to accept that we dont know the answers yet but once we have accepted that we dont know, we will be able to go about things more scientifically. There seems to be alot of overconfident guessing about what improves things. Generally a vitamin A detox takes 2 years of nearly zero vitamin A intake. Personally, I havent had the discipline to totally cut out vitamin A. Its in a lot of the food we eat.
4 hours ago, Roland1968 said:Was the oily skin a permanent change? or did it only last throughout the HGH intake?
I havesome acne now.
And smoking weed maybe play a role.
8 hours ago, DeepAcceptance said:Honestly, I wake up with dry mouth every day. It definitely feels unhealthy. This is 8 years post accutane use.
There seems to be some consensus that a low vitamin A diet improves things but we havent really been able to gather statistical data on how a low vitamin A diet affects adrenals and hormones so we are taking a bit of a shot in the dark with the low vitamin A diet. We are going to have to accept that we dont know the answers yet but once we have accepted that we dont know, we will be able to go about things more scientifically. There seems to be alot of overconfident guessing about what improves things. Generally a vitamin A detox takes 2 years of nearly zero vitamin A intake. Personally, I havent had the discipline to totally cut out vitamin A. Its in a lot of the food we eat.
Agree with you. I used the term "MAYBE".
But it is scietifically proven that HGH makes more oil on the skin.
On 1/22/2021 at 9:29 AM, SaffronAide said:Guys, here is a bit strange question but it is important for me. I have some overbite issue. My upper teeth overlaps my lower ones more than 3mm's.. In normal people it is between 1- 2 mm's!
I wonder if PAS did this to me because i didn't remember having this imbalance on my side profile at 16.. Our bones need proper hormones to grow. The Mandible bone (lower jaw) can grow faster or slower in relation to the upper jaw. It may be your genetics or other factors, such as hormonal imbalances. Sounds familiar?
Has anyone here have overbite- receeding jaw issues? If so, since what age do you suffer from Accutane side effects? If you have overbite, receeding chin\ lips don't aligning vertically parallelfrom the side profile, please quote me and let me know.
The Mandible bone continues to grow till 20's. And low T or GH, possible in our case, could have an affect on this. Making it shorter than our upper jaw and causing front teeth overlapping the bottom.
So im concerned if PAS gave me this. I want to rule out the possibility that PAS had anything to do with this, please help me with your info guys.
Here is how to check the overbite: https://www.wikihow.com/Diagnose-an-Overbite
Mine is slight, but as a perfectionist person, i consider surgery or braces.
Source on mandible: https://pubmed.ncbi.nlm.nih.gov/2309666/#:~:text=Mandibular growth was found to,correlated at each age period.
The Drs focus on the possibility of height getting stunted, but NO ONE talks about the lacking of thickening of jaw, bones, etc. To me, I have noticed a lot of victims are "fine boned". My son is very fine boned, his growth was stunted (among other things), he has a bit of an overbite, it has gotten worse, he just never filled out. I remember when he started filling out. I can see the difference from his passport pic, not too sure if it doesn't distort. I hate this drug. I wish I was dead, but I need to be here for my son. I am trapped for the rest of my life seeing the damage to my priorly perfect son.
Please if you have not already done so, respond to the MHRA survey. You only have until the 2nd of February..basically Tuesday night. The MHRA is sadly limited in scope, but many people, especially the mothers of dead children, fought for SIX YEARS to get this inquiry. Fill out the few questions, tell your story, tell them you want to be informed of the results of the inquiry-get your loved ones to submit a victims statement....It is NOW or NEVER. We can go back to the 700 pages of desperate searching and support after this.
Here are the emails of those in control of this inquiry: Tell them personally how you feel about this drug. I have. More than once.. [email protected], [email protected], [email protected], [email protected]
Here is the link to the survey: https://www.surveys.mhra.gov.uk/5fa2caf33414eb1dd21958ad
Anna Nim
On 12/15/2020 at 12:23 AM, Aaron76 said:Anna nim, I appreciate your passion and intelligence with wanting to ban accutane. Ever seen the movie Erin brockovich? You, sam ward, and colette all remind me of her. I believe the three of you have what it takes to find some of the worlds top anti pharma lawyers and go after the mhra and fda legally.
I also believe that if you three came here with, hey guys, we've got lawyers, were going to sue the fda and the mhra, and we need your help, every guy in here and every other website would LOVE to help you attack these assholes. We would do whatever you want us to do if you had lawyers attacking these two corrupt organizations. Anna, get in touch with Sam ward and colette, collaborate with them, and start hunting down some of the top anti pharma lawyers in the us and uk. If you 3 gals have lawyers who will sue, we will all help you in your fight against these two evil organizations.
True justice isn't selfish, he's tired and he's smart. We need to forget about begging these two scumbag organizations for help and legally attack the fda and mhra with lawyers. I believe anna, colette, and Sam are all more than capable of finding the lawyers needed to go after these two evil organizations.
Again, anyone reading this: Do the damn MHRA Inquiry. It is imperfect, but it also takes only a few minutes of your time. Numbers matter.You won't hear me talk about it after next week. I wrote those jerks today and asked them to extend the time frame to get information.
Ironically, Sam and I have been in contact for a year. I am Colette Ann. She is me. You've given me a spot of hope in an otherwise hopeless day. LOL. I have read a LOT of the private communication between Sam and the MHRA, they are annoying, but at least she is fighting for her son and ALL son's and daughters.
I would like to see the PIP in the USA have warnings for the sexual side effects. That is something that I might be able to realistically get happen.I think that having better warnings in the UK can be used to influence the FDA. If there had been warnings against it here in the USA, I would have NEVER given it to my only child.As you know, Roche pulled out of the USA and you can not sue a generic drug company. I feel hopeless because the SCOTUS tossed out about 7K of lawsuits. Those lawsuits triggered Roche to leave the USA..but fecking generics are here instead. It is all about money. Our lives mean nothing. The 'inventors' of this drug didn't want it to be put on the market, there have been large lawsuits, there have been hearings, murders, famous people damaged and dead...and yet, the drug is still on the market.
I am also going to find a Dr soon an attempt to sue my Dr. I 100% feel he overdosed my son based on what I've seen. Having proof of what is wrong with him is the needle in a haystack. Drs just stare at us like we have horns and don't diagnose my son with anything..but of course, so much is wrong with him.
Sam is tired. She has fought for 6 years and like a bad vacation T-shirt, all she has to show for it is this shite inquiry. The least we all can do is participate in the inquiry, she IS the reason it has happened. The lack of response on this site and propecia has pretty much had me toss up my hands. DYK that ONLYabout 450 people WORLDWIDE have filled it out. Pathetic.
Anna Nim
On 12/10/2020 at 2:37 AM, Gunnersup said:Just my 2 cents, but I do not care if this drug does or does not get banned. Zero interest in that at all.
And the irony is that if itdoesget banned, there won't be enough people with post accutane syndrome to warrant further research
Bit of a catch-22
Nice to know you care about other humans..the unsaid idea that if the drug gets banned (it won't, so don't worry your pretty little head), not enough people will be around getting PAS to justify research. Thinking that all the people who've been taking it since the 80's, some of which are reaching RETIREMENT age, would be enough. I personallywould be THRILLED and could die happily if I knew that no one would ever get this drug again. That is the only hope. No cure. No help. Nothing but endless damage of thousands, but hey, that is my 2 cents..
On 1/26/2021 at 6:35 AM, SaffronAide said:Sorry to hear your story, i hope you can beat this disease. We are very similar. I also took this poison at 16. Can you please and please answer my questions above? About jaw growth and overbite issues. Lower lip staying behind from side profile..
My post is just 3 messages above. Please quote me and contribute to my questions, i am close to figuring something out.
One more question, our clavicle\ shoulder bones suppose to grow up to 3cm's on each side between 16 and 25 years of age! Do you think your shoulders widened at least 2cms since PAS? 2CM's sound very hard to notice but it is not!! It is a very visible change on each side actually.
Hey SaffronAide, what acoincidence,your story couldnt relate to mine any further.
We both took accutane at 16 and on the topic of the jaw bone growth, the right side of my jaw does in fact appear noticeablylarger. This could be due to the fact that I have many dental crowns and some of them could be botched, but after reading your story Im suspecting accutane couldve caused this.
I have read that accutane unfortunately can stunt ones growth if taken as a teenager. But knowing now that it can deform bone growth symmetrically sounds scary. Italmost soundslike thoseagent orange geneticallymutated victims.
For your 2nd question, no I havent noticed anything about my shoulder width.But that jaw deformity is an interesting topic to say the least.
On 1/26/2021 at 8:23 AM, DeepAcceptance said:As much as it would seem like you could simply take a supplement to cure the issue, you have to understand some of these things from a Biological perspective. Human beings and pretty much any organism on earth are not designed to deal with the level of retinol (cis-13 retinoic acid(isotretinoin aka accutane)) toxicity for an extended period of time. What you are going to have to understand is that the fact that it is able to change anything in the body based on something that is taken orally, mean that pretty much everything that in the body is being changed on an epigenetic level. We live in a superficial society that deems a sacrifice like this to be worth it. Many people, myself included experience long term if not permanent hormonal imbalance as long as dysfunctional adrenals, meaning the adrenaline system does not work in the way that we are genetically designed to. It is my theory that pretty much any other organism that undertook this type of toxicity would not be able to sustain itself and go into a period of starvation. At this point, one of two things would happen, the organism would reset epigentically or the organism would die.
Luckily modern society allows us to survive even being crippled, the digestive problems that we are talking about are at this point theoretical. Personally, my hypothesis is that there is an autoimmune issue with the endocrine system. At this point we are just trying to figure out if there is anything that will change condition in the long term. We have come to realize that supplementation does not actually improve anything rather a low vitamin A diet along with fasting are our two ideas about how to improve things. Modern medicine has the approach that we can put pretty much anything into our system to fix pretty much any condition, I am here to say that this is a stigma that has been created by doctors and their egos and perpetuated in our education systems. Unfortunately, there are no known solutions, we are simply pioneers in the field of healing from this terrible and mostly unrecognized condition. If you are looking for external support and looking to assess yourself, do not see a main stream doctor. Target a naturopathic doctor and have them take a blood sample. I would like to see a least 3 people reporting the results of a blood sample analysis on here so we can take a look at what is being affected. Ideally we would get 10 or more blood analysis to identify which bodilyfunctions are being affected. I will post probably tomorrow what my blood sample results are, notably my topterone is way lower than it is supposed to be an from the information that I have gathered this is not uncommon. A doctor looking at my blood analysis was also able to determine that my adrenal system was not working properly.
Dude, trust me I understand how difficult it is to get rid of this beast inside. If you re-read my comment Iwas specifically asking about ANYsupplement that somebody here has tried (out of the gazillion sups they already tried) that couldve at LEAST made them feel a little better. After all thats what were here for,to seek recommendations...
And if somebody has noticed a slight benefit,we could look into its mechanism of action and then further correlate that with accutane damage,that right there is what youmisinterpreted. Dont assume I dont know what you guys (and myself) are looking for. Ive been studying noots/supplements from the time I stopped accutane to now (16-23). 7 years dude. Oh and ive been reading this one single topic for one of those yearsso yeah.
Thats why I created this account so I could hop on the solution train with you guys. That comment I made,is only a fraction of what I know already I have many more to discuss about. No offense but I think I made it pretty clear that this isnt a walk in the park but rather a cellular level issuein our body.
Depending on how long ago you were on Accutane Id say these supplements might be of benefit:
Taurine - helps rid Vit A
Tumeric - chronic inflammation
I like Pau D arco these days. Plus I know my body likes it via kinesiology testing over other inflammation supplements
Vit D with K - good for bones and immunity
I dont test that well to Vit D by itself
B Vitamins- again proper testing is best way, at times Ive needed B2, B1 and importantly B12. Right now for digestion Im on B6 specifically- again all tested via kinesiology
Not a cure here to be perfectly clear but much needed supplementsto make day to day living less stressful
Also good ol Vit C you cant ignore!!
@Gunnersup Your only symptom is hair loss right? I am going through that as well so i can empathize with your problem. For people who are suffering with mental issues, digestive issues, immune issues, joint pain issues etc. I feel extremely lucky that I dont have any of those. If the hair loss doesnt stop in the next few months, I will go to my derm get a biopsy done to see if its immune relate. Then I will book an appointment with a naturopath to see if I can get to the root of the problem. But tbh bro, worst case scenario, i buzz my hair then i hit the gym and get some tattoos lol. Im just writing to you to remember that hair doesnt make you any more or less of a person, and to feel content that at least you can just buzz your hair and rock the low cut.
Daily supplements
Ancestral fish eggs 3
Doublewood magnesium taurate 8
As needed for heartburn
Organic ginger
Diet
Omnivore
Organic when possible
Above is the current program. Has definitely improved sleep and mood for sure. Still quite a ways to go physically, though. Will keep the board posted.
6 hours ago, DeepAcceptance said:To a certain extent I think that fish oil pills improve things. I am not saying that supplementation doens't help under any circumstances, what I am trying to say that going into a period of starvation might be more beneficial than supplementation.
For me fish oil has always done far more harm than good. Many naturopaths recommend avoiding veggie oil due to the high isolated pufa content. Fish oil is also high in isolated pufa, which induces oxidative stress. The healthiest oils are high in saturated fat or monounsaturated fat. They are far more stable and less prone to oxidation than pufa rich fat.
For years the only tolerable way for me to ingest omega 3 was from whole fish. The ancestral fish eggs from Amazon has completely changed this. Way too expensive to do 6 per day so I do 3 daily and I feel that covers my omega 3 needs quite well.
I totally agree with you on starvation, but I think it can and should be daily starvation for 16 hours, with an 8 hour eating window. Daily fasting for 16 hours I believe is one of the best things one can do for their health.
Anna nim, I'm an american who has tried to do the mhra survey, but since I'm in the us, they don't allow me to submit anything. I don't have a valid british postal code. Ive emailed people at the mhra several times and they don't give a shit what I have to say about accutane.
You can't have the mentality that recovery is impossible. Every disease on the planet can be licked with the correct combination of foods and supplements. Accutane syndrome can and will be beaten.
The call for info ends on Monday.
Be the voice for all the kids to have lost their live to this evil drug.
On 1/29/2021 at 2:34 AM, Accudonia said:Dude, trust me I understand how difficult it is to get rid of this beast inside. If you re-read my comment Iwas specifically asking about ANYsupplement that somebody here has tried (out of the gazillion sups they already tried) that couldve at LEAST made them feel a little better. After all thats what were here for,to seek recommendations...
And if somebody has noticed a slight benefit,we could look into its mechanism of action and then further correlate that with accutane damage,that right there is what youmisinterpreted. Dont assume I dont know what you guys (and myself) are looking for. Ive been studying noots/supplements from the time I stopped accutane to now (16-23). 7 years dude. Oh and ive been reading this one single topic for one of those yearsso yeah.
Thats why I created this account so I could hop on the solution train with you guys. That comment I made,is only a fraction of what I know already I have many more to discuss about. No offense but I think I made it pretty clear that this isnt a walk in the park but rather a cellular level issuein our body.
Have you ever requested Roche to provide information to all known and supposed mechanisms of the drug?
Got to start somewhere and we need more info.
20 minutes ago, timetoban said:Have you ever requested Roche to provide information to all known and supposed mechanisms of the drug?
Got to start somewhere and we need more info.
Trust me we all want to see Pharma pay but we need more recognition. You are right that we need to sue the MHRA and the FDA - they are responsible for patient safety and they have allowed Pharma to hurtinnocent teenagers.
Note that the Thalidomide and victims pf other drugs did eventually get compensated years and years after the scandal so we do need to keep chipping away. But you got to realise we can't do it alone, we need everyone one of you guys to get involved. You can send us case history(this is your own experience in your own words - no records needed and it can be anonymous), fill out the survey and email pharma and the regulators. You can do all of this or just one, it all helps. One thing to note is that jumping on the bandwagon at the last minute to get compensation when the chance come along (we we hope and believe it will) might be much more difficult than if you actually getinvolved now - make yourselves known to the regulators and register with one of us. We are also looking for the government to commit to finding a cure but they need to know that there are a lot of sufferers if they are going to invest.
12 hours ago, Aaron76 said:Anna nim, I'm an american who has tried to do the mhra survey, but since I'm in the us, they don't allow me to submit anything. I don't have a valid british postal code. Ive emailed people at the mhra several times and they don't give a shit what I have to say about accutane.
You can't have the mentality that recovery is impossible. Every disease on the planet can be licked with the correct combination of foods and supplements. Accutane syndrome can and will be beaten.
Aaron, NOT TRUE. I AM an American. I have filled out the survey. I wrote them months and months ago. The survey specifically states they want to hear from anyone in the world. I have ALSO written them many times (I've posted the email address as well). You can see the letters I've sent to them here in my posts. I have heard back from them twice!
Now, as an American, you can not fill out the Yellow Card system, as that is for the UK.But you CAN fill out the same thing in the USA thru the FDA's website.
I "can" have whatever attitude I like. There are people in this group and others who have been suffering for 35+ years. Brain, Body, and DNA/Cellular damage can't be licked with supplements. Some (some) symptoms can be helped with diet, esp low gluten/carnivore and basic supplements.
My goal is to get the Sexual Side effects listed as a side in the American PIP. That should deter some people from taking it. It would have stopped us. My goal is to get some of these larger watchdog groups to spread more awareness about this drug, my goal is a youtube channel with my and my son's stories, my goal is to help the PFS and SSRI movement, as PAS is linked in with it. My ultimate goal would be to restrict this drug, if not an outright ban. Now, all that may not come to pass, but I am reaching for it.
If you have not already. Join propecia. org and take the Accutane/PAS damage survey. They are an pretty organized group. It seems there is more attention to the damage that Finn and Propecia causes, I suspect since men are older when they take it, they notice the changes faster..and I bet, the Drs tell them, "well, your drive slows at your age" or some other BS.
I want to see all of us also try to help raise awareness. I have personally spoken to people who have not taken the drug because of my words, and it makes me feel like I actually did a little good in this world.
Email your story to the MHRA, tell them you want to stay informed of the results of the survey.
I was feeling salty when I wrote the MHRA this week asking for an extension. A human acknowledged my email, butexpect.
MHRA,
The yellow card system is what I was referring to. I filled out the accutane specific survey earlier this weekend. The yellow card system should NOT be for Brits only. It should be for people all over the world. Some people give up when they come to the yellow card web page that asks them for their british postal info, and can't get beyond that page.