On 1/17/2018 at 0:38 AM, ScarRight said:

On 1/16/2018 at 11:25 PM, tanedout said:

Yep exactly what it was like for me, 10mg/day for 30 days. Dry lips was the only issue while I was on it. I was kidding myself with stuff like 'permanent side effects are rare' too.

This is my second time on it. The first occasion was a decade earlier. I know how my body reacts. And the literature does state permanent side effects can happen, but are rare.

Just wondering, the course you did a decade earlier, was it also low dose , or a higher (ie 1mg/kg) dosage?

33 minutes ago, Gladiatoro said:

We need more videos Accuity - your doing a great job.

Great minds think alike. Same post.

18 hours ago, guitarman01 said:

Im 20 years post Accutane. I took a course when I was around 15 for the minimum recommended duration (4 months?) im guessing the dosage was around 40mg a day that I worked up to.

Im going to show you my greatest concerns that may be related to Accutane.
When I talk about blood flow to the brain, I literally felt this when I was younger. (I felt the need to hang upside down from my bed at times to get good blood flow) I also felt heart type symptoms (abnormal skips, abnormal reaction to loud noises like fluttering)
Obviously I wasnt putting it all together as a young teenager, especially with hardly any internet.

So fast foward. These are my greatest concerns as it might relate, or have taken a toll.
MRI BRAIN WO CONTRAST
Volume loss of brain parenchyma is seen, advanced for patient's
age.
There is thinning of the body of the corpus
callosum. This finding is stable compared to prior MRI, 8/10/2013.

EKG 12-LEAD - Details
POSSIBLE LEFT ATRIAL ENLARGEMENT

Are these all my symptoms? no. But they are the most concerning and possibly induced or worsened by Accutane as some evidence might suggest.

Association of left atrial enlargement with left ventricular hypertrophy and diastolic dysfunction: a tissue Doppler study in echocardiographic practice.

Left atrial (LA) enlargement is a powerful risk factor for cardiovascular diseases

Why am I looking at Vitamin K?
There could be a strong antagonistic relationship with retinoids.

Teens who consumed lessvitamin Kfound in leafy greens such as spinach and cabbagewere more than three times more likely to developleft ventricular hypertrophy, the study found. ...Vitamin K, or phylloquinone, is important to blood clotting and healthy bone development, Augusta University explained in a release.Oct 2, 2017

Low vitamin K intake in teens linked to early signs of left ventricular ...

www.cardiovascularbusiness.com/.../teens-low-vitamin-k-intake-showing-early-signs-left...

Ok I appreciate your points on blood flow. Do you mind sharing what your 3 main symptoms are? Do you have sexual symptoms or not?

In the end all accutane theories will fail , it causes systemic dehydration and that is a permanent effect .

It is after all chemotherapy. It changes the way the body functions again permanently.

Permanent side effects include systemic dehydration, joint pain especially lower back , sexual disfunction and personality changes , accutane putting your personality at risk sounds about right .

Most important part about isotretinoin do not mess with your skin. Dont use saunas .

Best comment ever , my skin looks like porcelain I say sure but trust me there are consequences to this look.

5 hours ago, hatetane said:

Keep spreading the word and donating.
Keep reporting to Rxisk and other regulators.
PRAC at this moment is reviewing psychiatric adverse effects so please email them your story. I can provide the email addresses.
Sign up to receive Rxisk newsletters.

We all need to support their efforts so please get involved.

I donated.

If you feel helpless about this condition, sharing a link to their website and video is a good way to help support something that might be able to help.

1 hour ago, flynn said:

I donated.

If you feel helpless about this condition, sharing a link to their website and video is a good way to help support something that might be able to help.

Thank you so much Flynn.
Dr Healy is our best bet at the moment so we all need to support him.
Flynn is right - spread the word as much as you can.
Dr Healy is keen to get every country involved so any ideas you have - act on them.
One member on this forum printed details of the Rxisk ccompetition at his med uni.
Everyone should give details to any health care worker - this will at least create awareness and get the med community talking.
I got Haidut from the Ray Pete forum to communicate with Dr Healy.
Posting now reminds me that I should email Dr Bremner and Melnick - now on my to-do-list!
There is much we could be doing and every little helps,
https://rxisk.org/rxisk-prize-campaign-challenge/?utm_source=January+2018+News&utm_campaign=October+News&utm_medium=email

Dr Healy asks us all to fill out a Rxisk report and he is also trying to gauge how willing your doctors are to report on your behalf
etc so help him out.
Even this small effort helps.
I know that researches will need case histories so takes the time and get writing.
You can send directly to Dr Healy of you prefer - make sure you state that you are providing you case history for the attention of any
researchers. For instance if you had a temporary recovery and have a theory for it - this would be valuable knowledge.

I can always advise if anyone needs more info and I am happy to collect data.

Thanks

Anyone ever had hormone levels tested via saliva? Ideally serum and saliva as a comparison?

I didn't realise that apparently when tested via saliva this measures the amount of the hormone actually delivered via the receptors, so with issues seemingly involving up/down regulated receptors (so things look fine on the bloods, but the body evidently can't use the hormones correctly), this could be significant if it shows up abnormalities;

Quote

Saliva testing is proving to be the most reliable medium for measuring hormone levels. Hormone levels in saliva accurately represent the amount of hormone delivered to receptors in the body, unlike serum which represents hormone levels that may or may not be delivered to receptors of the body. Clinically, it is far more relevant to test the amount of hormones delivered to the tissue receptors as this is a reaction of the active hormone levels of the body.

[Edited link out]

This could be massive?! So for example, potentially you could see that serum tests show high DHT in someone, yet the saliva test would show very low levels - the conclusion being the hormone is not being properly delivered due to an issue with the receptors. If this was the case, and we could show this it would be a huge step!

@guitarman01I know you've had tons of tests, have you ever had a saliva hormone panel? My serum DHT is always very high, yet my body acts like it has none. A serum/saliva comparison would be extremely interesting

On 16. 01. 2018. at 3:00 AM, Gladiatoro said:

Can you believe people micro dose isotretinoin, might as well micro dose heroin ...

Today I again feel acu drained but this beer is making me feel a whole lot better.

On 16. 01. 2018. at 7:50 PM, Gladiatoro said:

One of the moderators on this forum , it was her derm. Aye aye is her forum name.

Her derm refused to put her on tan , smart derm. She had mild persistent acne sounds like me , definently NOT warranted for chemotherapy treatment.

I think she is from Australia.

Some derms are obviously OK. Trading your whole future for mild acne, not worth it.

Yes, some seem to take tane all the time just low dose- I can't imagine how old age will look like...

4 hours ago, Gladiatoro said:

In the end all accutane theories will fail , it causes systemic dehydration and that is a permanent effect .

It is after all chemotherapy. It changes the way the body functions again permanently.

Permanent side effects include systemic dehydration, joint pain especially lower back , sexual disfunction and personality changes , accutane putting your personality at risk sounds about right .

Most important part about isotretinoin do not mess with your skin. Dont use saunas .

Best comment ever , my skin looks like porcelain I say sure but trust me there are consequences to this look.

You forgot muscle effects, autoimmune effects, brain damage/pressure, night vision and host of others... I crashed bad on this poison. Real bad.

9 hours ago, Mike San said:

Just wondering, the course you did a decade earlier, was it also low dose , or a higher (ie 1mg/kg) dosage?

The first time was a higher dose. I built slowly to 80mg. Unfortunately it didn't fully cure my acne, but did improve it. I chose not to get a second course back then, because those higher doses did make me feel fatigue at the gym, etc.

All side effects did diminish once stopping the drug. So these posters saying permanent effects are going to get you is rubbish. The literature states they are rare.

So, as you can see, not only does nothing work for my acne, but even Accutane failed for me first time. Accutane does not have 100% success rates.

Not only has the low dose been more effective this time, but no fatigue during exercise.

Where are the peer reviewed studies saying Accutane causes permanent dehydration for everyone. I understand you want to advocate for tighter controls, but saying everyone gets permanent side effects long term will not help your cause without evidence.

11 minutes ago, ScarRight said:

The first time was a higher dose. I built slowly to 80mg. Unfortunately it didn't fully cure my acne, but did improve it. I chose not to get a second course back then, because those higher doses did make me feel fatigue at the gym, etc.

All side effects did diminish once stopping the drug. So these posters saying permanent effects are going to get you is rubbish. The literature states they are rare.

So, as you can see, not only does nothing work for my acne, but even Accutane failed for me first time. Accutane does not have 100% success rates.

Not only has the low dose been more effective this time, but no fatigue during exercise.

Where are the peer reviewed studies saying Accutane causes permanent dehydration for everyone. I understand you want to advocate for tighter controls, but saying everyone gets permanent side effects long term will not help your cause without evidence.

A recent poster here at 17 is basically losing hair completely from tane... what do you tell such a person?

Since there are literally 100 of things that accutane can cause, it's a very big risk, as even 1 or 2 permanent effects could be tough.

Destruction of eye lubing gland, night vision changes etc. and many more are recognised now to be irreversible in many cases.

We don't know how tane works. If risk is taken, only in very extreme cases, and only small dosage IMO. You don't know what effects tane will have on you, and which effects are transitory, and which permanent. Once taken, it coudl be too late.

4 months in and now I'm reading all these side effects and stuff, I read all of this before I started my course but went on it still. I have terrible bad cystic acne on cheeks and literally all over my back, my back is practicallycompletelyred from the pimples on it that bleed with the slightest aggravation, and no other meds worked for me so that's why I started Accutane. My mindset now is, whatever happens, happens. If I get permanentside effects then so be it, there's no way I'm going to be dealing with this painful bloody acne anymore. So far my only side effects are dry eyes and lips.

3 hours ago, ScarRight said:

So these posters saying permanent effects are going to get you is rubbish.

No, it's a warning. Its suppose to scare people to think twice if they don't have cystic acne and are considering Accutane.
Because of some of these stories and forums young adults are much more aware of what some dermatologists and doctors have completely downplayed as being 100 percent safe, and that any side effect will be temporary.

New Warnings With Accutane Use - ABC News

Megan McKinley, 19, had been an honors student until she took Accutane, the popular acne drug.

Once on Accutane, she began experiencing fatigue and memory loss, and her mother, a psychotherapist, asked the doctor if her symptoms might be connected to the drug. The doctor said the drug and her feelings were unrelated.

Megan improved after she stopped taking Accutane, but when placed back on it for another course of treatment, she had a big meltdown, and never quite recovered. Today, the young woman often spends days crying, cannot concentrate and cannot attend classes at school. She is finishing her education at home.

The Food and Drug Administration had to pressure the drugs manufacturer, Roche Pharmaceuticals, of Nutley, N.J., to issue new warning labels about how it is prescribed.

Girl loses most of her pancreas to acne medicine - BBC News - BBC.com

The teenager whose life was wrecked by controversial acne drug: Rare side effect nearly killed 15-year-old who lost all her hair and is now diabetic

• Elin Rowlands wanted treatment for acne after being targeted by bullies
• Her dosage was increased from 30mg to 70mg a day in five months
• Parts of her pancreas started to die after inflammation stopped blood flow
• She is now diabetic and reliant on enzyme pills after four operations
• Her hair fell out through stress and she might not be able to have children

The guy that just posted above me, his situation I understand.

On 1/18/2018 at 7:20 AM, tanedout said:

Anyone ever had hormone levels tested via saliva? Ideally serum and saliva as a comparison?

I didn't realise that apparently when tested via saliva this measures the amount of the hormone actually delivered via the receptors, so with issues seemingly involving up/down regulated receptors (so things look fine on the bloods, but the body evidently can't use the hormones correctly), this could be significant if it shows up abnormalities;

[Edited link out]

This could be massive?! So for example, potentially you could see that serum tests show high DHT in someone, yet the saliva test would show very low levels - the conclusion being the hormone is not being properly delivered due to an issue with the receptors. If this was the case, and we could show this it would be a huge step!

@guitarman01I know you've had tons of tests, have you ever had a saliva hormone panel? My serum DHT is always very high, yet my body acts like it has none. A serum/saliva comparison would be extremely interesting

I don't understand how this works though or makes sense? Delivered to which receptors in the body?

1 hour ago, tanedout said:

@guitarman01I know you've had tons of tests, have you ever had a saliva hormone panel? My serum DHT is always very high, yet my body acts like it has none. A serum/saliva comparison would be extremely interesting

I see this medically validated for cortisol only.

6 hours ago, flynn said:

Ok I appreciate your points on blood flow. Do you mind sharing what your 3 main symptoms are? Do you have sexual symptoms or not?

neurologic dysfunction (dysautonomia), musculoskeletal (muscle weakness) and vascular. I believe all three of these are intertwined.
my dentist also told me I had an abnormal jaw structure, so maybe bone abnormalities as well, or lack of growth.
Yes, but not complete dysfunction.

Lets take a look at this.
Accutane documented Birth defects
abnormalities of the face, eyes, ears, skull, central nervous system, cardiovascular system, and thymus and parathyroid glands.

Documented external abnormalities include: skull abnormality; ear abnormalities (including anotia, micropinna, small or absent external auditory canals); eye abnormalities (including microphthalmia); facial dysmorphia; cleft palate. Documented internal abnormalities include: CNS abnormalities (including cerebral abnormalities, cerebellar malformation, hydrocephalus, microcephaly, cranial nerve deficit); cardiovascular abnormalities; thymus gland abnormality; parathyroid hormone deficiency.

So this is basically lack of development.
This is basically what young adults endure (exposure) that a fetus can not.
So could Accutane stop/slow development in some susceptible young adults or teenagers?
Is my mild cerebral atrophy from lack of development?

That critical parts of the brain involved in decision-making are not fully developed until years later at age25or so.

Brain Maturity Extends Well Beyond Teen Years : NPR

I thought I remembered this math looking worse. Didn't someone else post some numbers comparing Accutane (13-cis) to retinol?
Just looking at weight, 40mg Accutane equals 133,000iu vitamin A.
This cant be too far off, their structures look very similar.
https://en.wikipedia.org/wiki/Retinoid

Vitamin A (as retinol)

133000 IU = 39.90 mg

36 minutes ago, TrueJustice said:

Can all those advocating Accutane or currently taking it Piss Off from this forum!!!

Youre insulting our intelligence and its offensive to us victims......go post somewhere else please!!!

Show some respect and piss off from this forum.

Most of them are probably either sadists or psychopaths, obsessed with harming other people. They probably got that way after accutane messed with their heads but were too unintelligent/unaware to even notice major changes in theor OWN BRAIN. Thats why I have VERY LITTLE respect for anybody who took this murder pill and saw it as a positive. I know plenty of people outside of here who have seen a negative change in the personality of everybody who took accutane.

Considering how much more thie pill has been prescribed as of lately, I think society might have a mental crisis on our hands in the next few years, similar to what the Romans had with lead pipes. (although there are a lot of other messed up things in the post industrial world that are probably going to lead to societys downfall)

2 hours ago, ScarRight said:

It's a prescription acne medication forum you know. There should be some balanced debate. Lots of misinformation around here. I would still love to see those peer reviewed studies of all of these permanent effects of Accutane? Because I would love to be informed.

But this is a specific thread and it's not a pro/con accutane debate thread. A mod just posted a couple pages back and made it clear what the deal here was.

The great thing about the internet is you can search for whatever information you want. www.pubmed.gov So have at it.

Accutane is a teratogen, a chemotherapy adjunct medication, capable of genetic transcription which is why it has success vs. cancer and success with the exocrine glands in the dermis. These are called facts, backed by information that is free to search on the web. If you want to advocate that Accutane is completely safe, that is your prerogative, just don't do it in this particular thread.

I think a couple of members tried to address your "lots of misinformation here" argument with a few posts, you haven't really provided any counter arguments, and aside from gladiatoro and his off topic rants, you don't really have much of a point...

2 hours ago, ScarRight said:

I was replying to Gladiatoro in regards to his belief that Accutane is as harmful as heroin. The other members on here do raise and discuss some valid concerns.

We don't know how accutane works, and we do know how heroin does... so it might be worse long term dep on dosage?

Gladiatoro is angry because the drug is given too easily, and we aren't properly warned. There are people who have now lost almost all hair, derms just tell them, no this is not permanent... make no mistake- most wouldn't have taken if they fully knew this risk.

Accutane does miracles for eg neuroblastoma, and may be to choose in extreme acne, but most patients don't fall into this category. Yet, they are given this.

I have managed to link some of my side effects to studies, and even gave few links here- but now it's not easy to fix this. I have made natural recovery to soem extent.

9 hours ago, bigburd24 said:

4 months in and now I'm reading all these side effects and stuff, I read all of this before I started my course but went on it still. I have terrible bad cystic acne on cheeks and literally all over my back, my back is practicallycompletelyred from the pimples on it that bleed with the slightest aggravation, and no other meds worked for me so that's why I started Accutane. My mindset now is, whatever happens, happens. If I get permanentside effects then so be it, there's no way I'm going to be dealing with this painful bloody acne anymore. So far my only side effects are dry eyes and lips.

You appear to be a very tough case, so maybe considering tane is ok... when acne becomes a disability/true pain, then you need to weigh. But, most cases are not like this.

Hi I heard that someone on this forum made a fully recovery from sexual side effects using Finasteride? Can anyone give me the persons username or link me to the pages where he talk about the recovery.

If there is any evidence of people recovering from sexual side effects from accutane, I think it's a huge positive as it shows condition is reversible. However also don't want false hope, so I'd like to check it out myself.

Also if anyone has any links to forums of other users reporting recoveries could you send them over please

6 hours ago, fiksi said:

We don't know how accutane works, and we do know how heroin does... so it might be worse long term dep on dosage?

Gladiatoro is angry because the drug is given too easily, and we aren't properly warned. There are people who have now lost almost all hair, derms just tell them, no this is not permanent... make no mistake- most wouldn't have taken if they fully knew this risk.

Accutane does miracles for eg neuroblastoma, and may be to choose in extreme acne, but most patients don't fall into this category. Yet, they are given this.

I have managed to link some of my side effects to studies, and even gave few links here- but now it's not easy to fix this. I have made natural recovery to soem extent.
You appear to be a very tough case, so maybe considering tane is ok... when acne becomes a disability/true pain, then you need to weigh. But, most cases are not like this.

Correct severe cystic nodular acne it might have a use then again I read about a woman taking sea salt baths for her severe body facial acne so there are alternatives. Diet etc ....

Also expect to loose most of your hair it is after all chemotherapy. For some it grows back for some it does not.

Just giving update...

saw a top rheum he said my high igg and speckled Ana wasn™t high enough to suggest disease
he will do lip biopsy to finally rule out sjorgens as the ssb ssa were negative
and my mouth isn™t really dry
jjst eyes nose skin scalp

he did say me urinating 15-20x a day could possibly be contributing to this extreme dryness 
and suggested diabetes insipidous 
not sure if anyone has been checked for this or urinates so much

my high estrogen was brushed off

did just do 2 24 hour urine tests 
for carcinoid and adrenal gland tumor

was hoping to see some progress on this site

best of luck to everyone

heres my
skin currently 
still no clue what I have and not sure what to do

This is it just normal
no washing 
no heat
no sex
no sun

had v beam after tane a decade ago
never went back
so maybe need it

Currently wash with water before bed and moisturizer with organic thing

i avoid dairy gluten wheat sugar fast frozen processed 
candy soda bs

drink about 2.5 liters water somedays only 3 bottles
i piss so much afraid to drink more

i wake up every 2 hours no matter what 

omega 3-2,000
vitamin d-5,000
probiotic
vitamin c raw
b complex pure
blaxk urgent seed 2x
magensium glycinate

close to just giving up

2 hours ago, Gladiatoro said:

Correct  severe cystic nodular acne it might have a use then again I read about a woman taking sea salt baths for her severe body facial acne so there are alternatives. Diet etc ....

Also expect to loose most of your hair it is after all chemotherapy. For some it  grows back for some it does not.

As you know, I didn't lose much hair, though this may yet happen- with tane you don't know. But, I have a host of other side effects, which are pretty bad. 

Doctors downplay these, and you don't know if they will fully recede, and when. 

10 minutes ago, Nemesisbrady said:

Just giving update...

saw a top rheum he said my high igg and speckled Ana wasn™t high enough to suggest disease
he will do lip biopsy to finally rule out sjorgens as the ssb ssa were negative
and my mouth isn™t really dry
jjst eyes nose skin scalp

he did say me urinating 15-20x a day could possibly be contributing to this extreme dryness 
and suggested diabetes insipidous 
not sure if anyone has been checked for this or urinates so much

my high estrogen was brushed off

did just do 2 24 hour urine tests 
for carcinoid and adrenal gland tumor

was hoping to see some progress on this site

best of luck to everyone

heres my
skin currently 
still no clue what I have and not sure what to do

This is it just normal
no washing 
no heat
no sex
no sun

had v beam after tane a decade ago
never went back
so maybe need it

Currently wash with water before bed and moisturizer with organic thing

i avoid dairy gluten wheat sugar fast frozen processed 
candy soda bs

drink about 2.5 liters water somedays only 3 bottles
i piss so much afraid to drink more

i wake up every 2 hours no matter what 

omega 3-2,000
vitamin d-5,000
probiotic
vitamin c raw
b complex pure
blaxk urgent seed 2x
magensium glycinate

close to just giving up

What are your vasopresin levels? Tane messes up the pituitary gland... this urination/thirst might come from this?