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Before taking Isotretinoin look at the yellow Card data analysis. Yo can also look up other drugs like Doxycycline (many deaths).
The FDA has a website too where you can look up all reported adverse events of any drug. Remember though that only between 1 and 10% of people will ever report an adverse event. Nearly 1,400 Isotretinoin deaths reported in the US!
Did anyone know before they took the drug that suicidal ideation can persist be permanent and or occur once you stoptaking the drug. Was anyone told about the high risk of sexual dysfunction and that this is why so many kids kill themselves once they stop taking the drug(others reasons too of course)? Who knew that the most likely time to commit isotretinoin suicide is up to a year after stopping treatment and that you should be monitored during this time? Does anyone agree that if victims don't tell anyone about their adverse effects and then commit suicide months or years post the drug - then the connection between the suicide and Isotretinoin may never be recognise so there is a very good chance that there have been even more suicides than those we already know about?
Take part in the review - it so importantas we want them to agree to fund research to find a cure.
Hey everyone, I know I am late to this topic but I came across this thread in a desperate attempt to find solutions. Has anyone had any success in ridding their permanent side effects doing anything recommended? Or found anything else?
permanently dry flaming cracking lips
my nose is always peeling,
digestion issues
excessive sweating all over body and scalp
Theres nothing really other than time and thus youll need to prepare yourself for 20 more years of it....
watch how much soap you use, that will dry you out even more.
excess sweating - cant do a thing about it other than keeping hair short and drinking heaps of water!!
thatll only help with hydration, youll still sweat just the same
On 1/26/2020 at 12:11 AM, elle1987 said:Hey everyone, I know I am late to this topic but I came across this thread in a desperate attempt to find solutions. Has anyone had any success in ridding their permanent side effects doing anything recommended? Or found anything else?
permanently dry flaming cracking lips
my nose is always peeling,
digestion issues
excessive sweating all over body and scalp
Report your symptoms (aka: Damage) to the FDA or Yellow Card (UK), numbers matter. Not as much as they should, but they do matter for others who come afterwards. Report to the UK Inquiry that is occuring in just a few days, a letter of testimony. Groups on FB for support, at least you will know you are not alone.
Digestion-Keto, low/no dairy and low/no gluten is helpful, as well as Probiotics daily, as a low FODMAP diet helps IBS type issues. If your gut is healed, then your body MAY absorb nutrients better.Things may improve in a few months.
Drink extra water. Omega 3's may help with skin and eyes.
Speak to your Dr, but expectlittle help.
Welcome to the horrible damage that this drug causes. Sorry, really sorry.
So, I wrote a SECOND email to the MHRA Inquiry. Here is my letter and *ALL* the emails I have for it. If you have not already done so, send in your own letter. Tell them you want to be a shareholder and be kept informed. (Notice: This second letter is lifted from the long post I wrote).
To:[email protected] <[email protected]>; [email protected] <[email protected]>; [email protected] <[email protected]>; [email protected] <[email protected]>
Subject:The Real Issue with Isotretinoin
If you will not do this, at the very least then make it only above age 18 (thus ensuring only the worst cases get on it), only after a year of intense monitoring by a Dermatologist that includes dietary changes, require a very low dose/short time frame and INTENSE education by both doctors and patientsabout the true risks...of which, after someone has been educated, they would never agree to take such a risk with their very health.
About the sexual dysfunction I discussed before (look into my profile, and allmy previous posts), I am 99%sure my libido increased after the changes I did, including taking tribulus terrestristwice a day (as recommended by the manufacturer - I bought the Optimum Nutrition bottle). I'll do a new blood test to see how my hormone levels have changed, in the upcoming weeks.
One thing I didn't consider at the time but I will now is following a KETO diet to lose thisbelly I have (that I can't get rid no matter what). Before visiting a dietician again I am now changing my macros to 60% fats, 25% proteins and 20 or 15% carbs. And instead of 4 or more meals a day I am only eating after waking up, 7 am, at 12 pm after going to the gym, and then 7 pm at dinner (I sleep at 10 pm), with no snacks between. This I never did before, and was constantly eating. From what I readthis is detrimental for this goal.This and increasing fat intake will definitely help with testosterone, plus a new workout routine.
Anna Nim: dairy is good, but you need to get the best, not the crap usually sold everywhere, with sugar that disrupts the ability of certain beneficial bacteria to successfully colonize the gut, and also encourages bacteria to grow in the small intestines, which may lead to IBS and other problems.
The best channels I found on Youtube that are helping me a lotare FlavCity (link here), that teaches you how to read labels and recommends the best optionsfor each type of food, and Thomas DeLauer (link here) / Dr. Eric Berg (link here), the last two about KETO and everything health-related.
I think it's worth trying lots of tips from these channels before giving up and saying all the damage can't be reversed. Remember that most doctors are either too dumb to know any of this or simply don't care about making us well, since they and Big Pharma profit from it.
Someone mentioned above "permanently dry flaming cracking lips"
This is perhaps the most common symptom from Accutane use
Let's look into why this can happen...
Has any of you with this symptom ruled out everything mentioned in this video?
"excessive sweating all over body and scalp" = have you speak with a neurologist about it? Check this link: https://www.healthline.com/health/autonomic-dysfunction#treatments
"digestion issues" = Try to treat this one by adding moreprobiotics to your diet.
And here's an example of video from the Flav City channel, about which yogurt to buy. He also reviewed cheese, non-dairy milks, meat, and many more.
Appreciate the info Perene
theres some good stuff to delve into here - Keto diet sounds interesting too
Unfortunately I can preempt the result with excess sweating and any conclusive outcome
All our symptoms ever do is mimic symptoms of already diagnosed conditions - theres never any conclusive outcome, unless you got colon cancer from Accutane and even then a court would debate it was from Accutane.
Im at a good point with kinesiology, about to do a review of all work completed over last 18 months. Ive cleared countless viruses, bacteria and fungus that have lurked in the body for god knows how long. Be interesting where we go from here...
What Ive learnt with diet and taking supplements is that they must be activated in the body, its not just goodenough to take say Vit B2 and hope it does some good, if its not activated it wont do anything- activating it takes adjustments and more often than not fixing emotional blockages that prevent it from working in the body - a kinesiologist can help here
It would be logic to assume that for someit won't do much good tojust take a supplement with a dose that would benefit aperson that never used Accutane and it's perfectly healthy. So don't assume what worked for me will do for you. And for few Accutane users the higher dose of this drug was more devastating for them (I took 40 mg).
Sometimes there's need to increase how much vitamins we takedue to what I said before: malabsorption syndrome, some damage to the liver or you are not taking with some fat and in the proper time.
For vitamin D-3 I take withK-2 (MK-7 and 100 MCg), and at the same timeomega-3 fish oil, plus 5 mg of boron. Boron is said to increase testosterone and help with this absorption, just like K-2. Magnesium and zinc (of which most are also deficient) also help too, and both are needed for higher testosterone levels. I take Mag (which has a relaxing effect) + Zinc 30 minutes before going to sleep.
Don't take calcium like dairy before D-3 and/orMag + Zinc. I consume dairy in the breakfast, 5-6 hours before lunch. Vitamin-A also help with it, cod liver oil has a nice balance of D and A, it's a good additionif you can find.
In short, there are many things (to list all of them here would be impossible) we can do to try finding out if they are somehow effective to reverse these issues.
As for KETO, I found two interesting links with suggestions for diet: http://charlessledge.com/important-macronutrient-optimal-testosterone-production/
https://thinkeatlift.com/eat-high-natural-testosterone/
Such as: we need to remove certain carbohydrates,like grains (wheat, rice, cereals, pasta, corn, bread, etc), while focusing in the few that are most helpful: starchy tubers and veggies: potatoes, yam, pumpkins, beets, carrots, turnips, squash, etc.
I am guilty of not removing beans and rice from mine, and the presence ofgluten (as one of the links suggested) might explain why my prolactin measured high (in the 20's) every single time I checked before. A high prolactin also explains lower libido/testosterone.
I don't think we can follow a diet devoid of carbs (or reduced to say, 5%)forever, and especially if the person goes to a gym everyday and it's planning to do strenght training (also essential to boost T), it's unlikely to me that so few carbs will do any good, or maybe it will take years to adapt.
So I am still eating my sweet potatoes everyday, despite reducing carb intake to almost 20% and less than 100g a day (118 for proteins and 137 for fat). In this video there's a suggestion to vary between how much carbs we consume,in what is called a "cyclical" ketogenic diet.
Most importantly is to understand that it's not just one thing, one magic pillthat will solve all our problems. It's a combination of many things at once, that we never consideredbefore. That's why I stressed here the importance of doing all sorts of blood tests and checkups to evaluate our real condition. Many people have died due to doctors not checking what they should.
Take a look at the studies about sexual dysfunction caused by Accutane, for example. I don't see any of them detailing if any of the affected have tried all possible things to improve their condition. For blood tests alone there are dozens we can do, and this would need to be compared with enough patients to investigate one possible link that connectsthem.
If we say "this effect may be through a reduction in plasma testosterone levels", we are not explaining HOW Accutane does that, and if all sorts of measures are innefective against it (since it's hypothesized there's no way to change things 100% to what they were BEFORE we took the drug). That's what we need to figure out, for this and many other symptoms.
I wouldnt worry too much about not being able to search with keywords
There were people who had good things to say only to disappear overnight which was completely annoying- you wouldnt know if theyre cured or not??They came here all guns blazing and then just went away
Theresa heap of different paths one can follow trying to combat tane issues, my understanding and probably one of the more fascinating is the anti Vit A path - Id like to think well eventually here back from some, itll take years though to eliminate and bring levels back down so I dont suspect well here from them soon....
within the 700 pages theres no clear cut cure if thats what youre thinking
50 minutes ago, TrueJustice said:I wouldnt worry too much about not being able to search with keywords
There were people who had good things to say only to disappear overnight which was completely annoying- you wouldnt know if theyre cured or not??They came here all guns blazing and then just went away
Theresa heap of different paths one can follow trying to combat tane issues, my understanding and probably one of the more fascinating is the anti Vit A path - Id like to think well eventually here back from some, itll take years though to eliminate and bring levels back down so I dont suspect well here from them soon....
within the 700 pages theres no clear cut cure if thats what youre thinking
Now and then people popup and say fasting is the cure.......don't know how that goes long-term.
4 hours ago, Calcified said:Now and then people popup and say fasting is the cure
Short and long term fasting is a quick way to dump vitamin A out, but you need to have good stores of molybdenum, selenium, etc... short term fast probably best, as running out of B vitamins would hinder improvements.
4 hours ago, under_tow said:
Short and long term fasting is a quick way to dump vitamin A out, but you need to have good stores of molybdenum, selenium, etc... short term fast probably best, as running out of B vitamins would hinder improvements.
What about a possible increase in organ and tissue vitamin A due to reduction of fat and insulin brought on by fasting?
Just something else to consider based on studies.
I'm with the ppl who say the drug is still in the body. I also believe avoiding high amounts of preformed vitamin A (retinol) is wise. I'm against the idea of isolated vitamin b1 and B2 supplementation. Im also against the idea of avoiding beta carotene foods. I believe the best foods for accutane people are foods high in beta carotene, ie organic carrot juice, sweet potatoes, dried apricots, tangerines, etc. Beta carotene from whole foods is harmless, and is extremely beneficial to resupply true vitamin A while the fake vitamin A is being detoxed.
The two biggest things to consider with accutane is that it dramatically shortens your dna telomeres, and it ends up getting trapped in your lymphatic system. Solve these two problems and you solve the accutane equation.
There's one herb, created by none other than God Himself, that can solve both of these problems. That herb is astragalus. Excellent for restoring your telomeres back to normal, and excellent for scrubbing your lymphatic system. There are at least two high quality brands that I know of. Oregon's wild harvest and pure mountain botanicals, both available at Amazon.
I just started astragalus last week and its definitely producing positive effects mentally. Much less stress, much improved sleep, and massive reduction in appetite. It's as if my body has found the key herb necessary to conduct a much needed caloric decrease, to allow my body to burn off the stored belly fat and thus release fat soluble accutane from my body.
I'm incorporating organic spinach powder to the program when it arrives today also for the whole food low calorie vitamins, minerals, and antioxidants. Spinach is second only to kale on the vegetable orac chart. I chose spinach over kale because kale is a crucifer, which many people including myself are sensitive to.
I believe these two things combined with a fast or a low calorie diet are key to recovery. Will post results at some point in the next month or so.
2 hours ago, Aaron76 said:Im also against the idea of avoiding beta carotene foods. I believe the best foods for accutane people are foods high in beta carotene, ie organic carrot juice, sweet potatoes, dried apricots, tangerines, etc. Beta carotene from whole foods is harmless, and is extremely beneficial to resupply true vitamin A while the fake vitamin A is being detoxed.
Beta carotene is not benign, if it does not make in out in bile on first intake, it has to be cleaved into two to enter the vitamin A detox path, so you end up with double retinol.
Detox path:
alcohol -> ADH -> ALDH -> acetic acid
carotenoids(plant) -> retinol(eggs, dairy, etc) -> ADH -> retinaldehyde -> ALDH -> retinoic acid (accutane)
ADH = alcohol dehydrogenase, ALDH = aldehyde dehydrogenase
B1 and B2 are crucial in the ADH and ALDH systems, taking these in low dose will help. Alcoholics and vitamin A heavy diets are depleted in B1.
Removing all forms of vitamin A from diet after accutane will be very helpful. Test your serum retinol levels if you want evidence. Seeing now that people following zero/low VA intake for one year still register levels above normal. Accutane makes this worse.
49 minutes ago, Aaron76 said:Whole food Beta carotene does NOT convert to retinol unless the body needs it to
If beta carotene doesn't get excreted when first eaten in our bile, it gets stored, they only way out of the body is the detox pathway, so yes it does convert to retinol(double), then retinaldehyde form, then retinoic acid and out the kidneys. Keeping it in storage, will just prolong your symptoms. After accutane no one should be downing beta carotene foods. Pectin intake is a good way to bind beta carotene when eaten.
You guys know a lot about pathways etc for detox
I know this much, I took a bottle of recently purchased VitB2 and I tested very positively to it.
Ive taken Vit E in before and also tested good against it meaning it doesnt stress my body out and its goodto take.
Ive taken a bottle of Vit A in and it absolutely stressed my body out!!
I take Pariot for reflux and decided to take that in during yesterdays session, my kinesiologist said 95% of prescription drugs you will test poorly against, occasionally people test ok he said.The reason youd mostprobably test negative is due to loadon liver and stressing out the gut etc amongst other side effects
He was right, Iinstantly tested poorly to it. I cant stop taking it though as Ill get wicked reflux again. Were working on trying to fix gut and diaphragm to stop this reflux from happening
The problem with your misguided theory is the body will never want to get rid of accutane unless it has real vitamin A coming in, in the form of whole food beta carotene. Once the body starts receiving the much needed whole food beta carotene, it then says ok, now that were finally receiving what we truly need, we can now get rid of this fake stuff. As long as you avoid carrot juice, sweet potatoes, etc, the body will continue to hold onto accutane, because it's the best it has onhand.
Astragalus root capsules, nori seaweed capsules, organic carrot juice, sweet potatoes, yang diet. Synthetic isolate supplements like b1 and B2 do more harm than good.
1 hour ago, Aaron76 said:The problem with your misguided theory is the body will never want to get rid of accutane unless it has real vitamin A coming in, in the form of whole food beta carotene. Once the body starts receiving the much needed whole food beta carotene, it then says ok, now that were finally receiving what we truly need, we can now get rid of this fake stuff. As long as you avoid carrot juice, sweet potatoes, etc, the body will continue to hold onto accutane, because it's the best it has onhand.
Astragalus root capsules, nori seaweed capsules, organic carrot juice, sweet potatoes, yang diet. Synthetic isolate supplements like b1 and B2 do more harm than good.
Your theory is truly misguided...
retinoic acid (accutane) does not stay in the body, it is not fake vitamin A, after you stop taking it, it is removed via glucuronidation, retinoic acid is not storage form, and cannot convert back to storage retinyl forms(esters, palmitate). But when you overload the body with retinoic acid, the body has to shut down the detox path, because your body does not want any more retinoic acids produced. This shutdown happens, by depleting B1/B1/B12 and molybdenum, selenium, iodine, etc... once you stop the accutane you are screwed, because now all thing needed to get vitamin A out, which is why we had acne in the first place is turned off. Taking in any carotenoids will stop your symptoms, because you go back into VA storage mode, but once you stop VA intake, you go into excretion mode, to be in the mode, you need to make sure these are replete: B1/B1/B12 and molybdenum, selenium, iodine, etc...
B1 and B2 supps are not synthetic, and are severely depleted by accutane.
How is b1 B2 b12 working for you? You've been at it with them for how long, and no success? They did nothing but bad things for me. Two different quantum' biofeedback machines I've been hooked up to are recommending whole foods high in beta carotene. Unfortunately neither of those machines had astragalus in their product database. Astragalus is the key catalyst that restores telomerase, and gets the lymphatic detox pathways opened up.
Naturecrazy guy from YouTube also says the drug is still in the body. Google 8 tips for reversing accutane symptoms. He was simply wrong about how to detoxify it.
I agree glucuronidation is an important step in the process, and I agree with avoiding preformed retinol, such as beef liver, cod liver oil, etc. Anyone who says that synthetic isolate supplmements ike b1, B2 b12 are good and wholesome organic foods such as carrot juice and sweet potatoes are bad I simply cannot agree with. Whole organic foods are always going to be healthier for the human body than synthetic isolates.
I would add that whole fish is another important staple since dha is an rxr and rar ligand. Albacore tuna pouches and breaded shrimp are two species I'd recommend for people who don't typically enjoy fish.