Hey guys,

I had really bad joint pain and I started applying AnuMed D3 Cream every night and it has provided great relief for me. I purchased it off of Amazon. I apply it on my knees, arms and wrists before bed.

Im starting to think all this shit on google is making ppl worse

its making me

these natural docs and more are quacks

i dont believe avoiding gluten dairy wheat and nightshades and histamine intolerance

they told me I had mutated mthfr gene and pushed vitamins

then I read vitamins they gave me can cause insomnia severe anxiety and more

im starting to think docs and natural docs are just all fuckin liars

So someone on YouTube said avoid a high beta retinal
bone broth
and fish oil

my body overloaded a
supplememt e

so I guess veggies and eggs Chex cereal and fish oil are contributing to dryness

im gunna see if I avoid 

my levels in 2016 were this 

Retinol 52 range 30-1.20
and retinyl 0.02 0.00-0.10

3 hours ago, Nemesisbrady said:

So someone on YouTube said avoid a high beta retinal
bone broth
and fish oil

my body overloaded a
supplememt e

so I guess veggies and eggs Chex cereal and fish oil are contributing to dryness

im gunna see if I avoid 

my levels in 2016 were this 

Retinol 52 range 30-1.20
and retinyl 0.02 0.00-0.10

Yeah but then there™s examples of doctors putting tane patients on Vit A so which one is it??

I™m thinking we™re showing signs of a deficiency with all the dry skin over say having too much!!

I would just take a nominal amount of retinol in diet (ie from a normal amount of eggs, butter, dairy etc).

Not necessarily try to avoid it all together , and not supplement with it either.

My serum retinol levels were within the normal range. Supplementing with it made me a lot worse.

Nameisbady - what vitamins gave you insomnia, just curious?

What do we do about all the dryness though?

Im almost thinking to go back to a dermatologist, dont mention depression or anything like that, Ill just ask what can be done about this systemic dryness.

Thats the thing not sure whats causing what
the b complex i have
I take for mthfr gene
ans not sure if that causes more issues
i suffer with extreme insomnia anxiety
depression
i never had these issues besides anxiety since accutane

dryness is annoying me

im just avoiding butter
eggs and high beta foods

maybe I need it maybe I dont

i figure my levels were normal 2016
need update
my skin eyes nose scalp so dry
lisig my hair now
dandruff bad
i have no clue what to wash hair with as its always dry and every conditioner is for seb derm mines dry not dandruff

Something Thats the thing not sure whats causing what
the b complex i have
I take for mthfr gene
ans not sure if that causes more issues
i suffer with extreme insomnia anxiety
depression
i never had these issues besides anxiety since accutane

dryness is annoying me

im just avoiding butter
eggs and high beta foods

maybe I need it maybe I dont

i figure my levels were normal 2016
need update
my skin eyes nose scalp so dry
lisig my hair now
dandruff bad
i have no clue what to wash hair with as its always dry and every conditioner is for seb derm mines dry not dandruff

what else is weird is
flax seed supplement use to make my eyes water when yawning
but proboemmis I have high estrogen levels and that can raise it

i feel like Im always pulled cant win

Another weird symptom happening lately
use to get it

its like tiniutis but its crackling fluid noise when I blink heavy its right ear
i also have cysts or polyps my mri said in sinus area

I was trying to sleep yesterday when my hear was shaking feeling and heart beat like sound in ears and could barely open my eyes almost like sleep paralysis feeling
and lightheaded

bern lightheaded all the time lately getting up dizzy Black speckles
like when I took beta blockers

clearly something up
i could be dehydrated as I have cut down fluids because excess urination at night

thanks accutane
nkw afraid of fluid
food and ppl
meds and vitamins !!!!

On 5/23/2017 at 1:13 PM, mariovitali said:

@guitarman01@tanedout

Is there any organization/foundation of Post-Accutane Syndrome sufferers? Who do i contact for research if we have cases of individuals that have reversal of symptoms?

Please see here also regarding Lupus, CFS and Vitamin K. I have searched in this forum for Lupus and there are some hits coming up.

http://forums.phoenixrising.me/index.php?threads/machine-learning-assisted-research-on-cfs.51283/page-3#post-853541

The best person to contact would be Dr Healy and Rxisk. As you probably know they launched a competition aimed at researchers to encourage research and look for cures.
We have long since recognised that we need collaboration - to have a data base re blood tests, what people have tried any recoveries etc. Let me tell you - this is an impossible task for accutane kids for all sorts or reasons but mostly the young age of victims and shame they feel which of course is a travesty!
The shame should be on the heads of the medical profession!

The PFS guys have much better networks given that they are older and probably find it harder to hide when they have wives and longterm girlfriends.

49 (UK)cases of accutane induced erectile dysfunction reported - anyone believe we don't have more cases than this?
My guess is that probably all of the 77 suicides were suffering from sexual dysfunction. Some we know definitely were and for the others it most likely led to their suicides. Having said that some committed suicide during psychosis and maybe were never aware of the damage that was being done to mind and body.

I can only keep repeating that you must report your side effects. If you resent you regulators report to Rxisk - they are independent and want to help victims.

We are strongly considering launching a group legal case and we need case histories.
I would consider including anyone from the UK who seriously wants to get involved but you would have to come forward now - no coming on board later.

For anyone in the US i have the contact details of lawyers who are at this very moment considering
legal action so if you want their details PM me.
Thanks for your hard work Mario

@hatetane

Thank you, much appreciated.

Regarding David Healy : We spoke through E-Mails many times and i cannot say anything but nice words about him.

I also wanted to give you all a short update. I have very positive feedback from 3 Professors of Medicine, mentioning this work as "very interesting".

I do not believe that at this point it is necessary to say who these Professors are. But the fact that not one of them suggested that whatever i write on a 33-page document is nonsense but was mentioned as "very interesting", gives me a great boost that whatever Machine Learning found could be be a significant help to sufferers of all of these Syndromes.

One interesting paper i found lately is from Professor Maureen Hanson. Please read below :

Quote

Primary bile acids such as sulfoglycolithocholate (13) are synthesized in the liver and the major bile salts result from its conjugation with taurine (28) and glycine, forming taurochenodeoxycholate and glycochenodeoxycholate (21), respectively, which are all numbered metabolites found to be significantly reduced in ME/CFS patients. Reduction in these compounds is suggestive of damage to the liver. A study from the FDA National Center for Toxicological Research (NCTR) was able to identify liver injury biomarkers as the result of drug-induced hepatotoxicity in rats²⁵. Strikingly, several other metabolites identical to our findings were also identified in their report, namely 5-guanidino-2-oxopentanoic acid (12, also named 2-oxoarginine), sebacic acid (60), along with energy metabolites from the glyoxylate and dicarboxylate metabolism. These biomarkers could be used to define a serum metabolic signature by creating a panel for hepatotoxicity prediction

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5365380/

I will let you know as soon as i have more news

s://www.cell.com/immunity/fulltext/S1074-7613(15)00392-1

Has anyone looked at this?

I have been looking at central nervous system treatments and healing - has anyone got ideas about this?

Will it bring back moisture????

ive got no oil production it would appear...,

5 hours ago, hatetane said:

Has anyone looked at this?

I have been looking at central nervous system treatments and healing - has anyone got ideas about this?

Yes I do.
I have literally just been looking at this.
Maybe it's something we can look into as a group.
I'll get back to you.

Dietary Fatty Acids Directly Impact Central Nervous System Autoimmunity via the Small Intestine

https://www.cell.com/immunity/fulltext/S1074-7613(15)00392-1

@guitarman01

This chart paints the picture quite well i believe  :

Ive been interested in the nervous system ever since my vocal cords start having problems. It would only make sense considering all of our problems are widespread throughout the body.

This is what im looking at. I will probably get this tested at some point in the near future. I'm sure this will be something that could evolve with time.
it reminds me of the 23andme of microbiome testing. Im not sure if this is available outside of the states.

[Edited link out]

From just one gut sample, you get a comprehensive breakdown of your microbiome, how its functioning, and how it compares to others.

Not only that, you can test multiple body sites. It gets more pricey though.

Why might this be important? We took a drug that killed antibiotic resistant bacteria.
https://www.huffingtonpost.com/entry/childhood-antibiotics-gut-health-inflammation_us_58e3c168e4b03a26a3667198

Antibiotic Use In Young Mice Linked To Inflammatory Disease

Here is where I am going to be posting the majority of my information for the time being.

On 5/1/2018 at 8:09 AM, guitarman01 said:

This is what im looking at. I will probably get this tested at some point in the near future. I'm sure this will be something that could evolve with time.
it reminds me of the 23andme of microbiome testing. Im not sure if this is available outside of the states.

[Edited link out]

From just one gut sample, you get a comprehensive breakdown of your microbiome, how its functioning, and how it compares to others.

Not only that, you can test multiple body sites. It gets more pricey though.

Sample all five sites:your gut, mouth, nose, genitals and skin.

Learn about all five microbiome sites.

You find some correlations amongus or some bacteria populations that have drastically changed compared to a healthy control group, and there might be part of your answer.

Why might this be important? We took a drug that killed antibiotic resistant bacteria.
https://www.huffingtonpost.com/entry/childhood-antibiotics-gut-health-inflammation_us_58e3c168e4b03a26a3667198

Antibiotic Use In Young Mice Linked To Inflammatory Disease

Disrupting the early development of a healthy gut microbiome can do serious yet reversible damage, a study finds.

Researchers have long known that childhood antibiotic use can impede the normal growth and development of gut bacteria. This, in turn, affects the function of the immune system around 70 percent of which is contained in the gut.

The gut is home to trillions of bacteria that play a crucial role in our physical and mental health, including the digestive system, brain and immune system. One side effect of antibiotics is that they can indiscriminately kill off important strains of healthy bacteria alongside the bad bacteriathey aim to target.

@Jorcruz24

As always I appreciate this sort of info, having said that can we just assume this is indeed what happened to us.

So what next???

A Gastroenterologist who found nothing sinister in me was only able offer iberogast and probiotics - clearly they arent enough to fix our issues in the gut.

Ive raised on this forum years ago that doing the gut thrive in five program could be very promising in restoring gut health, no one responded. Isnt this program easy for you guys in the US to do??
Easy to get all the products etc that are involved!!!

In my opinion we basically get an accutaned form of MS....

3 hours ago, Colinboko said:

In my opinion we basically get an accutaned form of MS....

Yep, thats a good way of putting it!!

love the help we get from Roche, so much integrity from this company, really have the patients best interest at heart.

On 5/7/2011 at 11:07 AM, IndigoRush said:

Hello.

 

First of all, don't get too excited if you're in a similar situation to me and were hoping this post would hold the fix for long-term (Ro)accutane damage. I just wanted to express my situation and see if anyone can help.

 

I'm bored of reading depressing no-way-out answers and I refuse to give up and stop trying to fix myself. I'm also not inviting those who say the side effects aren't caused by this drug - I am 100% sure, and have read enough posts from others to know that Accutane isn't simply 'out' of your system after a month. I've read several theories into why things like IBS, Erectile Dysfunction and knee problems can occur months or years after stopping treatment. I'm talking about the liver storing the high-levels of Vitamin A, Accutane staying in the colon, and even something - which if it's true means only bad news - to do with DNA change and 'Telomere' shortening, which means a slow but sure decrease in health(This has been written by Nathan Carr, who you may of heard of).

But I'm not writing to find out which of these theories, if any, is true. I want to see if anyone can actually give good advice on supplements/diet, or whatever else, to repair damage from this poison.

Below, I will list the details of when I took this drug and what side effects I have + how I cope with life. One last thing - Anyone saying that these side effects are rare, i.e 1%, forget it. 1% reported. Since taking this drug, my life has been limited and difficult. I'm not in that 1% statistic because I haven't reported it directly to the manufacturer. I expect the figure is a lot higher.

 

As I said, side effects can come on AFTER taking this, so people could be ignorant to the cause. However, I know better, and after watching my health drop dramatically while/after taking Accutane, I can firmly say it's the cause. Let's begin ...

 

Basics: I'm 21 at the end of this month. It's now 5 years since I touched Ro-accutane (Ro-accutane is just the British name for it). I took it from December 2005 - May 2006. I was meant to finish in June, but stopped due to feeling very depressed/suicidal (because of the drug). My problems are below...

 

- Dry Eyes (Severe)

- E.D/ Low Libido (Started last year and has gone on consistently since)

- Hair-loss (Including eyebrows, facial hair 'gaps' and body hair)

- Slow Healing (Shaving is a pain now - No, it's not my technique)

- Lack of sebum (oil)

- Brain Fog/ Memory problems - Somewhat minor

- Anxiety (mainly because of the other side effects - i.e. dry eyes causing me to feel embarassed about eye contact)

- Excessive hair (Not related to head, but my beard grows high up on cheeks and even on the outside of my nose)

- I believe I look older than I should due to lack of oil

- Joint/Muscle problems - Aches/ Slow recovery

- Excessive sweating.. Terrible if I go running at the gym, for example.

- Dry mouth

- Nosebleeds more than I should

- Fatigue

- Overall depression and confusion (*Rhetorical question* Is this a direct symptom or am I like it because of all the other side-effects stressing me out?)

 

That's what I can think of for now. Of course, I wasn't told about half of these being a possibly problem and I was told any side-effects will be temporary. I was 15, so I had no reason not to trust the Doc's word.

 

I've tried lots of different supplements (a lot of which I still take just incase they are helping/slowing down the problems) including Omega 3, Biotin, B-Complex, Vitamin E, Vitamin D, Vitamin C, Collagen, Hyaluronic acid, Aloe Vera Juice, MSM, Colostrum, Garlic, Acetyl L-Carnitine, Acetyl L-Cysteine, Milk Thistle, Dandelion Root, Quercetin, Tumeric.

 

So, yeah, I've tried a lot of things. The Milk Thistle and Dandelion Root are recent additions because despite having my liver test results come back as positive, I've heard your liver can still not be functioning correctly and people are given liver tests monthly while taking this drug for a reason, right? I'm starting to eat better foods as this sh*t taught me that Natural is the way to go. I still binge on cakes and that occasionally - Mainly for comfort. I'm average weight and height, but want to cut out processed foods to support my body.

 

I don't want to make this EXTREMELY long, so I'll cut it short. I'm currently seeing a Homeopathy about these problems. And Yes, I know "Science says it's boll*cks", and I don't understand how it's supposed to work, but sometimes you have to think outside the box and give things a go. I don't have high hopes for things getting better these days, but I'm not giving up. There is so much more I could say, but let me know your thoughts. I don't want to hear negative and hopeless responses. What HAS helped you? Acne.org seems to be the biggest place to speak about this, but we NEED the word out, so the 'experts' can do the research instead of hoping for someone else to fix us.

 

Thanks for reading,

 

Indy.

Oh my goodness! I'm sorry that you've had such prolonged and severe effects from taking Accutane. Please let me know what you have done since this post to deal with your side effects and if they're better now. I've taken Accutane twice with beautiful results and no side effects, but that's not what you want to hear! Here's something you may want to read about though:
https://www.ncbi.nlm.nih.gov/pubmed/26653640
This article from the National Institutes of Health shows that Accutane improves male fertility without affecting male hormone levels. So, as many negative side effects as you've had, maybe your future children will be healthier! Your hair loss is not a result of male hormone levels, so hopefully the cause (probably vitamin A toxicity) will gradually alleviate itself over time. Cheers!
As a side note, it's possible that your dermatologist should've prescribed you a lower dose. I'd advise going back through your records and seeing if your dermatologist may've accidentally prescribed you too much Accutane. As you can see in this article from the National Institutes of Health, 120-150mg medication/kg of body weight is advised:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3970835/
My dermatologist actually miscalculated my dosage and gave me a dosage that was TOO LOW, which is why I had to take Accutane again. I knew this by reviewing my medical records. My dermatologist then confirmed that a dosage mistake had been made.
I'd also advise requesting your blood tests from your dermatologist, as I assume you had to have your blood drawn every month while taking Accutane (as required by law at least in the US). You may want to file a complaint with your dermatologist if signs of vitamin A toxicity were in the blood records and ignored or missed. Vitamin A toxicity from Accutane is so uncommon that your dermatologist may've made some mistakes:
https://www.ehealthme.com/ds/accutane/vitamin-a-toxicity/

You say Vit A toxicity and other posts suggest Vit A deficiency post tane.....which one is it???

we cant even decide on this?

@guitarman01

You didnt display any lesions when you had your MRI did you?

no

On 4/22/2018 at 3:34 AM, brendan452 said:

Has anyone tested for biotin deficiency and been found to be deficient if just one of you could confirm for me
thanks

I have tested forBiotinidase deficiency. It came back in range. I have not tested actual blood levels of biotin.
Biotin is something that is produced by bacteria though, just like some other nutrients.
I have read enough though that in a case of dysbiosis bacteria can "steal" and repurpose some nutrients for further growth.
So maybe there is a catch 22 where even though you need some nutrients, supplementationmight do more harm than good.
As you have mentioned this quite a few times yourself.

1 hour ago, guitarman01 said:

no

I have tested forBiotinidase deficiency. It came back in range. I have not tested actual blood levels of biotin.
Biotin is something that is produced by bacteria though, just like some other nutrients.
I have read enough though that in a case of dysbiosis bacteria can "steal" and repurpose some nutrients for further growth.
So maybe there is a catch 22 where even though you need some nutrients, supplementationmight do more harm than good.
As you have mentioned this quite a few times yourself.

What did they see again? I know you had abnormalities