Same here biotindase was okay but I'm thinking of getting a biotin blood test.not available on NHS so will be paying privately for this test

@homedesigner879
There is a lot of evidence that accutane does affect male hormone levels. In females too. During treatment. I'm not sure this study looked at that: https://www.ncbi.nlm.nih.gov/pubmed/26653640
Looked it up on sci-hub. I wish they published better methods and materials. Is a little interesting what they found when I've read so much to the contrary. They say they tested T/FSH/LH before and after treatment. Not during? How long after? Why don't they show more of their data? Why no all important dht?

Studies on the affects of tane on hormones/steroids/5ar:
http://www.ncbi.nlm.nih.gov/pubmed/7714084
http://www.ncbi.nlm.nih.gov/pubmed/8175961
http://www.ncbi.nlm.nih.gov/pubmed/2965551
http://www.ncbi.nlm.nih.gov/pubmed/9298137
http://www.ncbi.nlm.nih.gov/pubmed/1827343

Anyway, doubt the people of this thread are normal responders. We're outliers.

Got my MRI done today, along with an EMG..

and holy FUCK it was uncomfortable. Definitely do not recommend. My doctor insisted I have it just to make sure we get everything covered..

Been here a decade. Read every Accutane post ever made, seen every pro/con argument ever created.

The medical journals are just confirming what anecdotal evidence I've collected over the years. Accutane is very dynamic. We will see a pattern of patients with low T + FSH with functional (not optimal) sexual organs, and we see some with nominal to high T but complete erectile dysfunction. To be technical, you wouldn't need to affect hormones directly, if the drug has the potential to insult the brain. Whether it be the specific glands (hypothalamus) or just ageneral area (ANS, hippocampus). Neurological trauma is sometimes associated with decreased hormone production, but not always, not in every case.

Anyways, when you said androgen, it reminded me of the infamous India Dermatology excerpt:

Sir,

Isotretinoin is a gold standard drug in the armamentarium of a dermatologist for the treatment of acne vulgaris. It is the only oral drug acting on all the four pathophysiologic factors of acne vulgaris: Androgen-derived overproduction of sebum (seborrhea), ductal hypercornification (closed and open comedones), changes in microbial flora and immunologic processes and inflammation.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4533586/

so guys im probably too soon / paranoid to reply in this thread but i kinda need ur guys help since it seems like you guys are probably the most knowladgable about this thing

so i've been on accutane for 6 months ( started july - january ) and on a realy low dose
i noticed my hair started falling but it wasnt realy that bad , fastfoward too today almost 3 months post accutane i started noticing that my looking pretty thin and losing it from everywhere even on the back of my hair

i didnt lost that much thou ( 5-30 / day includes shower ) but i begin to paranoid about it since im 17 and my hairline got receeded into NW 1.5-2 in just a matter of months because of this lol

i tried minox a couple of weeks ago but my hair started losing like crazy , currently im popping finas but i kinda afraid too continue on it

what should i do guys ?? my dad doesnt even thinned until he's 45 and it was because he realy2 stressfull

im just afraid losing my hair entirely on my 20s , should i just wait for it or should i keep popping the finas ?

I've been trying to cure stop this hair loss for many years now I've tried many things and it's very frustrating I really do feel your pain mate

20 hours ago, Colinboko said:

Got my MRI done today, along with an EMG..

and holy FUCK it was uncomfortable. Definitely do not recommend. My doctor insisted I have it just to make sure we get everything covered..

Ive got a referal for one but keep putting it off. Im actually ok with tight spaces, but reading about the contrast agent has got be a bit paranoid for a few reasons.

What was uncomfortable for you and Im wondering, did they use contrast?

37 minutes ago, mikez said:

Ive got a referal for one but keep putting it off. Im actually ok with tight spaces, but reading about the contrast agent has got be a bit paranoid for a few reasons.

What was uncomfortable for you and Im wondering, did they use contrast?

No. The MRI was totally fine and yes I got with and without contrast. Just close your eyes and just let yourself relax and youll be okay.

The EMG was terrible! For the EMG they were literally poking and prodding needles into my muscles and it was horribly uncomfortable. Like toe/foot cramp times 20000

Will the MRI and EmG hopefully give us the answers we need

1 hour ago, brendan452 said:

Will the MRI and EmG hopefully give us the answers we need

Couldnt tell ya. My EMG was normal.. but practically all EMGs are deemed normal unless youre wheelchair bound. Its a pretty barbaric test and even my neuro doesnt like doing it. She just wanted to make sure nothing was attacking my limbs. The MRI on the other hand might..

3 hours ago, Colinboko said:

5 hours ago, brendan452 said:

Will the MRI and EmG hopefully give us the answers we need

Couldnt tell ya. My EMG was normal.. but practically all EMGs are deemed normal unless youre wheelchair bound. Its a pretty barbaric test and even my neuro doesnt like doing it. She just wanted to make sure nothing was attacking my limbs. The MRI on the other hand might..

What are they looking for specifically with these tests? Chemo brain damage?

I know what you mean by being uncomfortable, I went to have one, an MRI about 13 years ago and couldnt go through with it - way too claustrophobic for me and I ended up moving around too much and the reading wasnt accurate. The lady said you can be sedated for this procedure but I moved on and never came back to doing it.

I totally get why some of us are looking at these procedures- the biggest issues for me are head related....brain fog, generalised pressure in the brain, light sensitivity etc etc

Could be just inflammation but the age old question, what to do about it??
I just dont know what to take? Turmeric perhaps if you want the natural stuff but what else for inflammation??

1 hour ago, TrueJustice said:

What are they looking for specifically with these tests? Chemo brain damage?

I know what you mean by being uncomfortable, I went to have one, an MRI about 13 years ago and couldnt go through with it - way too claustrophobic for me and I ended up moving around too much and the reading wasnt accurate. The lady said you can be sedated for this procedure but I moved on and never came back to doing it.

I totally get why some of us are looking at these procedures- the biggest issues for me are head related....brain fog, generalised pressure in the brain, light sensitivity etc etc

Could be just inflammation but the age old question, what to do about it??
I just dont know what to take? Turmeric perhaps if you want the natural stuff but what else for inflammation??

No, the MRI was totally fine. The emg was uncomfortable.

And no not looking for chemo brain damage. Looking for lesions, shrinkage (although dont really have anything to compare it to), encephalitis, inflammation in general etc.

These can be indicative of MS.. So I need to rule it out.

My left vocal cord is paralyzed. Something is attacking my nervous system. And Im sure whatever is attacking it is also attacking several other things. Propeciahelp has several threads focusing on autoimmune and I really think we need to start zoning in on it. Lets be honest... corticosteroids have been the ONLY medications to bring people back from this 100%. (Or at least close)

We think its androgen insensitivity? I think our androgens are constantly blocked by some weird antibody that went haywire. Our 5AR replenishes.... what happens when it replenishes? It gets blocked and then the cycle starts over again. The only way to stop it for now, is to suppress the immune system.

We wont know until we try.

Hey guys something happened where I think Im starting to maybe hopefully figure out this mess some of us are in
in terms of dryness still

so earlier someone recommended keto diet
i read symptoms of that and it was insomnia
dryness
and more
so I said ok low carbs dry eyes
restricted calories

now I know before tane I ate whatever
but since sick I eat strict

this also lead to eating disorders and starvation and look up the symptom of that

now I know with this diet and depression
I sometimes dont eat 16 hours a day Im in bed

no fluid
water

now I stumbled upon how this also can cause mucin deficiency
which is basically constipation
dryness in body

guess what causes mucin defeicny most times

vitamin a deficency
now i know we seem toxic and deficient

could be receptor issues
or maybe some of us got whacked too much and are now deficient or toxic

again I know this is frustrating

but its weird keto lead me to dryness
which lead me to starvation and diets
(clear skin diets???)
lead me to glucose and mucin issues
which lead to vitamin a

hey its the first thing thats made me feel hopeful as to answers

so for anyone with sjorgens like issues
this could be something

enjoy your weekend

Oh I missed the bit about EMG. I had one last year for a shoulder issue..was very uncomfortable.

Glad to hear the MRI and contrast gave you no side effects.

20 hours ago, Colinboko said:

No. The MRI was totally fine and yes I got with and without contrast. Just close your eyes and just let yourself relax and youll be okay.

The EMG was terrible! For the EMG they were literally poking and prodding needles into my muscles and it was horribly uncomfortable. Like toe/foot cramp times 20000

https://www.drugwatch.com/accutane/lawsuits/

wont fix us or anything

but they never had a class action lawsuit??

Why dont we all come together

since docs wont figure it out too scared to say truth

lets all march down and take a fuckin stand

this drug is reason I will end up blowing my brains out eventually
and reason I cant enjoy life or even time now with family

and have to spend 1000s for eye treatments and more

with little help

fuck this chemo company raping kids

17 hours ago, Nemesisbrady said:

https://www.drugwatch.com/accutane/lawsuits/

wont fix us or anything

but they never had a class action lawsuit??

Why dont we all come together

since docs wont figure it out too scared to say truth

lets all march down and take a fuckin stand

this drug is reason I will end up blowing my brains out eventually
and reason I cant enjoy life or even time now with family

and have to spend 1000s for eye treatments and more

with little help

fuck this chemo company raping kids

I have asked plenty of times for victims to come together. I get that young men don't want to go public
or show their faces but there are many other ways that they can help. I can't just print personal stories of the forums because they are anonymous so worthless. But if I had a case history by email I would have something to fight with. The email address can be anonymous but it must be valid for verification. I don't know about you but hardly anyone on this forum has ever bothered to report their side effects and they don't recognise that they are part of the problem. If every person who ever suffered sexual sides had reported it many of us would not be in this situation now.
Many of the victims on this forum say that they have nothing to gain by reporting their sides because for them the damage is done - pathetic! This whole attitude is why accutane is still being prescribed so easily and without informed consent.
You have to get the side effects recognised and then you fight for research for cures and then compensation.

Some guys came through for me when we were pushing for sexual sides to be added to the PIL - I know we
were not 100% successful because although the PIL has been updated it only says the sexual sides are
temporary. This is where many of you could help. I would like to be able to walk into the regulators office and throw 100 case histories on the table but it's never going to happen because no one can be asked to type an email!!
By some guys I mean mostly Dubya and Accuity - they are always helping me out.

Indigo to this day has never reported his side effects - don't you all agree that he is really letting himself down and many others - what about all the future victims - don't any of you care about them?
I could easily arrange a march or a protest - parents and victims did this back in 2013 - we do it again and again if we have to until we get heard. The trouble in no one will listen to one voice or even a small group - we need hundreds to turn up.

@namesisbrady - where are you from? - for some reason I am thing you are Irish!

On 5/4/2018 at 4:03 PM, marcosgunawan said:

so guys im probably too soon / paranoid to reply in this thread but i kinda need ur guys help since it seems like you guys are probably the most knowladgable about this thing

so i've been on accutane for 6 months ( started july - january ) and on a realy low dose
i noticed my hair started falling but it wasnt realy that bad , fastfoward too today almost 3 months post accutane i started noticing that my looking pretty thin and losing it from everywhere even on the back of my hair

i didnt lost that much thou ( 5-30 / day includes shower ) but i begin to paranoid about it since im 17 and my hairline got receeded into NW 1.5-2 in just a matter of months because of this lol

i tried minox a couple of weeks ago but my hair started losing like crazy , currently im popping finas but i kinda afraid too continue on it

what should i do guys ?? my dad doesnt even thinned until he's 45 and it was because he realy2 stressfull

im just afraid losing my hair entirely on my 20s , should i just wait for it or should i keep popping the finas ?

anyone fam ? any advice please

14 hours ago, marcosgunawan said:

On 5/4/2018 at 5:03 AM, marcosgunawan said:

 

anyone fam ? any advice please 

You are asking a thread full of permanent side effect sufferers what you should do? What do you personally think you should do?
 

On 5/6/2018 at 1:43 PM, Nemesisbrady said:

this drug is reason I will end up ***** eventually

fuck this chemo company raping kids 

Can you plz edit your comment or use the other forum (lastingsides.org) for venting, this is a 3rd party website and comments like that will derail the thread and we'll end up losing all of the valuable information over the years (granted its only a few pages worth buried in 500 pages of chaos). If you really have nothing to lose then you'd be trying all sorts of alternative medicine and therapies you can get your hands on.

My current alternative treatment for depression/brain fog is going well. I'm only 4 days into it, but so far so good. My current protocol is 5ml (2.5 morning/2.5 night) of Cerebrolysin a day for 30 days in conjunction with 1 hour of hyperbaric oxygen therapy for 2 months at 30kPA (month 1) and 40kPA (month 2) with o2 setting at (2LPM) and then (3LPM), respectively.

For the UK folks:
 

You just do the injections yourself I gather?

Id have a hard time doing that but I guess thats where we are at these days arent we!!

Nothing else has worked so experiment with this sort of treatment.

I wish you continued success, would also be good to know which you feel is working better for you....the injections or the hyperbaric therapy?Be good if you could keep a progress report with all that youre experiencing.

thanks

I too hope you have continued success. Are you using Cerbrolysin for brain fog only and depression only and no other somatic symptoms (eg headaches)? Thanks!

@guitarman01Did you ever have a cytokine panel done? Would you even consider it helpful ?

Hi all - it's been some time since I've looked through this thread, I'm probably about 50 pages behind at this point, but I wanted to provide an update. I recently saw a urologist who focuses on sexual issues in NYC who did not dismiss my claims that accutane has caused sexual dysfunction.

She prescribed me Addyi which is a drug thats meant to help with low libido issues. It's currently only FDA approved for women, but she seems to think it could help for men. If its covered by my insurance, I'm going to check it out.

What was most exciting was that she said after our visit she looked more into accutane and sexual side effects and says she is looking to do a research study with the hospital she works out of. Will keep you posted as I hear more on this.

Hello there. Stumbled upon this thread out of sheer Google-fu, and thought that I'd give my two cents, as ultimately I like this thread and I'm curious to see if anything ever comes of it.

Like most of you here I took tane as well, back in 2001 for 6 months when I was 15. During that time, I had joint/back pain, dry eyes, lips, light sensitivity, anxiety, and some bouts of nausea. While lucky for me the acne cleared up, I didn't exactly enjoy living like a vampire.

Approx. 1mo after stopping is when I noticed that my lips were no longer dry. The rest of the symptoms never really truly went away. It was soon after that I quit all HS sports due to pain, switched from contacts to glasses so that I'd stop cutting my eyes up, and went on my merry way.

Fast-forward 12 yrs, and I get diagnosed with Celiac Disease. Correlation? Well, lets just say that when that class action lawsuit was in progress, I was contacted by an attorney who, at the time was looking for Chrons sufferers, indicated that they were considering adding Celiacs to the list. Unfortunately, since there was no real tangible proof that one caused the other, they decided to leave them out. The origins of Celiac are still relatively unknown, but researchers believe that it can sit dorment in your DNA and get activated under traumatic conditions. Perhaps a cycle of tane can elicit this in some individuals?

So getting back to the OPs question for truth, I think the first most important thing that needs to be considered would be Vit-A toxicity. If any of those symptoms can explain the cause of something long-term, we might have a documented way to combat the detrimental effects on our body. One source ( https://www.healthline.com/health/hypervitaminosis-a#symptoms ) lists out just about every symptom reported when on tane.

Interestingly enough, the same reference also mentions that long-term toxicity can cause permanent changes, such as a diminished gut microflora. Once the good guys in our intestines get modified or wiped clean by antibiotics, it can take years for it to fully recover, and sometimes they never do.

While its not a solution by any stretch of imagination, I suggest trying three supplements that you did not list.

PRE- and PRO- biotic combo
The PRE part is crucial. You want to really prime your system here and try to restore as much as possible

Psyllium Husk
Insoluble fiber that works really well with the prebiotics to regulate and maintain healthy bowels

Gamma/Delta tocopherol and Gamma/Delta tocotrienol Complex
The proper Vit-E subset, not that bogus synthetic 400UI alpha-tocopherol nonsense

In addition to the supplements, one more thing is very important for detox: sweating. Work out, sweat A LOT, and get all of your energy out as often as you can. As obvious and as silly as it may seem, exercising has some of the best overall effects on your health. And just in regards to the Low T, if you remember to incorporate full compound lifts, such as squats and deadlifts, into your routine as well, you will surely bring those HGH, IGF, and androgen hormones up to their proper homeostasis.

Stay positive, eat healthy, and most importantly: don't forget to sleep!!!

Best of luck.

Trying every excuse in the book to get a prednisone taper. If my symptoms subside then I know autoimmunity is the route and if not then... onto the next solution.

I hear docs prescribe prednisone for migraines... may try telling my neurologist Ive been having really bad migraines and need a stronger anti-inflam.

22 hours ago, hyperlogger said:

Hello there. Stumbled upon this thread out of sheer Google-fu, and thought that I'd give my two cents, as ultimately I like this thread and I'm curious to see if anything ever comes of it.

Like most of you here I took tane as well, back in 2001 for 6 months when I was 15. During that time, I had joint/back pain, dry eyes, lips, light sensitivity, anxiety, and some bouts of nausea. While lucky for me the acne cleared up, I didn't exactly enjoy living like a vampire.

Approx. 1mo after stopping is when I noticed that my lips were no longer dry. The rest of the symptoms never really truly went away. It was soon after that I quit all HS sports due to pain, switched from contacts to glasses so that I'd stop cutting my eyes up, and went on my merry way.

Fast-forward 12 yrs, and I get diagnosed with Celiac Disease. Correlation? Well, lets just say that when that class action lawsuit was in progress, I was contacted by an attorney who, at the time was looking for Chrons sufferers, indicated that they were considering adding Celiacs to the list. Unfortunately, since there was no real tangible proof that one caused the other, they decided to leave them out. The origins of Celiac are still relatively unknown, but researchers believe that it can sit dorment in your DNA and get activated under traumatic conditions. Perhaps a cycle of tane can elicit this in some individuals?

So getting back to the OPs question for truth, I think the first most important thing that needs to be considered would be Vit-A toxicity. If any of those symptoms can explain the cause of something long-term, we might have a documented way to combat the detrimental effects on our body. One source ( https://www.healthline.com/health/hypervitaminosis-a#symptoms ) lists out just about every symptom reported when on tane.

Interestingly enough, the same reference also mentions that long-term toxicity can cause permanent changes, such as a diminished gut microflora. Once the good guys in our intestines get modified or wiped clean by antibiotics, it can take years for it to fully recover, and sometimes they never do.

While its not a solution by any stretch of imagination, I suggest trying three supplements that you did not list.

PRE- and PRO- biotic combo
The PRE part is crucial. You want to really prime your system here and try to restore as much as possible

Psyllium Husk
Insoluble fiber that works really well with the prebiotics to regulate and maintain healthy bowels

Gamma/Delta tocopherol and Gamma/Delta tocotrienol Complex
The proper Vit-E subset, not that bogus synthetic 400UI alpha-tocopherol nonsense

In addition to the supplements, one more thing is very important for detox: sweating. Work out, sweat A LOT, and get all of your energy out as often as you can. As obvious and as silly as it may seem, exercising has some of the best overall effects on your health. And just in regards to the Low T, if you remember to incorporate full compound lifts, such as squats and deadlifts, into your routine as well, you will surely bring those HGH, IGF, and androgen hormones up to their proper homeostasis.

Stay positive, eat healthy, and most importantly: don't forget to sleep!!!

Best of luck.

Thanks for the info, so yeah it is known that Vit E can help with combating Vit A toxicity.

Having said that, why are certain Doctors putting Accutane patients with toxic side effects on Vit A?? Its as if this crappy synthetic Vit A ( Accutane ) is best combated by taking real Vit A, but why is that? Im not hearing Doctors put anyone on Vit E....

So given that we continue to run around in circles cause no one in the medical community can shed any light, are we still dealing with Vit A toxicity even 20 years later? Is it stored in the liver etc?