23 minutes ago, tanedout said:

http://www.pfsfoundation.org/news/clinical-study-of-post-finasteride-syndrome-launched-at-baylor-college-of-medicine/

The results of the study are not out yet, but due soon according to discussions on forums. Search the forums on propeciahelp, solvepfs, swolesource etc if you want more info

This is awesome. Knew about the Harvard study which didnt really provide anything but this one seems very thorough. Even if we do find out something earth shattering, at least doctors can then start finding out therapeutic strategies to treat these damn symptoms and get us functioning closer to normal.

25 minutes ago, TrueJustice said:

Wouldnt banning isotretinoin even the generic version by default indicate that its too unsafe to use?

You & I know it is unsafe but a complete ban might open them up to further lawsuits, I dare say the generic version exits as it kinda protects Roche from more people trying to sue them for lesser issues than say bowel cancer. I can think of so many reasons to sue them - eye floaters, hair loss, sore joints, light sensitivity, depression - all are unacceptable 20 years after taking it, and I was never told about these things.

Pharmaceutical companies sure do have some power, their morals though are disgusting to say the least.....profits before people is their moto!

You took around 14000 mg correct.

Some people micro dose isotretinoin indefinitely crazy right , but people do it , i micro dose whiskey it helps me forget about the long term side effect lol.

One guy said Im not going to complain it kept my acne in check for 20 years , I would say if you look like a beast long term sides might be acceptable key word BEAST second key word MIGHT.

Tell this young man that isotretinoin is safe and effective , I think it messed up his life pretty good .

Notice one side effect listed is.... wait for it reduce blood flow to the brain hmmmm...

4 hours ago, Duperele said:

And how do you know that people will have heart failure or cancer? where the hell did you get that from?

About 10% of the US population have erectile dysfunction, which means that about 10% of accutane users will have erectile dysfunction, not because of accutane.

What are you a corporate spy or just brainwashed? I guarantee you the vast majority of people with the side effects either dont have enough sense to realize whats going on in their own heads or expirience all the side effects in a delayed manner. I have met plenty of people who have noticed something chamge in everybody who touches this murder pill, and if you didnt notice anything happen, that is YOUR issue!

Please get your sick mind away from this forum and go promote your precious life ruining murder-pill somewhere else.

3 hours ago, Gladiatoro said:

I've met several people who now have a form of Intracranial Hypertension (too much cerebrospinal fluid) that was caused by taking Accutane. (I had this condition, but it was idiopathic and it now in remission!) One case was resolved with daily medication and a lumbar puncture to drain fluid, but another had to have a shunt installed to drain the CSF fluid from the brain into the abdomen. The very first question the neurologist asked me was "have you taken isotretinoin for acne?"

I just want people to treat this as the serious medical decision it is. Many people take Accutane with few or easily manageable serious side effects, but some have dangerous side effects- and it should be considered very carefully.

So you tell me how safe it is .... remember kids and young adults are taking this.....

That would explain the hair loss due to intercraneal pressure increase literally chocking off hair folicals.

I agree, this drug is extremely dangerous... worst case is, even if you have no effects straight away, you may develop them long term.

Derms often "minimise" side effects, talk of dry mouth etc. and few if any are properly informed os very severe side effects.

What symptoms did these guys have? Just headache? Behind eyes? I need to get a battery of tests after this.

4 hours ago, tanedout said:

Many of the people raving about accutane on youtube will likely go on to develop serious conditions such as bowl cancer, heart failure, sexual dysfunction etc, and most will probably not link this to having taken the drug. Just look how 'treatment' increases so many of the markers for serious illness.

With increasing awareness of the dangers and side effects it's only a matter of time until statistics start linking things like much higher instances of premature deaths to people who have taken certain drugs like accutane. The pool of data is unfortunately still expanding as people are still trading having acne for a (shortened) life of serious health conditions.

Tbh, there are some cancers where tane works really well... if you have neuroblastoma, even a bad set of side effects is better than death.

That said, docs have mostly nto been honest with us around this drug. Some people will be permanently disabled.

The statistics don't link because we don't report properly. The chance of severe problems is far more than eg 1%.

5 minutes ago, fiksi said:

I agree, this drug is extremely dangerous... worst case is, even if you have no effects straight away, you may develop them long term.

Derms often "minimise" side effects, talk of dry mouth etc. and few if any are properly informed os very severe side effects.

What symptoms did these guys have? Just headache? Behind eyes? I need to get a battery of tests after this.
Tbh, there are some cancers where tane works really well... if you have neuroblastoma, even a bad set of side effects is better than death.

That said, docs have mostly nto been honest with us around this drug. Some people will be permanently disabled.

The statistics don't link because we don't report properly. The chance of severe problems is far more than eg 1%.

Most teens and young adults dont have cancer sorry just a few red spots.

2 minutes ago, Gladiatoro said:

Most teens and young adults dont have cancer sorry just a few red spots.

Exactly. That was my point. There are very few cases where benefits outweigh extreme risks of this drug. Which means even most who take it for acne, shouldn't have done so.

What kind of symptoms for brain pressure did guys you know had?

1 hour ago, Gladiatoro said:

You took around 14000 mg correct.

Some people micro dose isotretinoin indefinitely crazy right , but people do it , i micro dose whiskey it helps me forget about the long term side effect lol.

I can't imagine the horrible diseases this will inevitably invite... trading acne for lifelong diseases. I'd like to hear form micro dose guys when they are 50. If they even make it so far.

10 hours ago, Gladiatoro said:

So you have to ask yourself punk what kind of debilitating side effect are you going to have down the road.

Oh wow, calling me a punk.

Um.. This is my second time on Accutane. The first regime was over ten years ago. There were no long term side effects. They all stopped when ceasing the drug.

I only have dry lips. I'm sure that would stop too.

Care to provide any actual statistics? Quoting Emma Stine, a celebrity, doesn't really count? Any peer reviewed studies?

As an academic, when you need to call people things like 'punk' you generally know they have a weak argument on offer.

I did say I am sorry to hear your body reacted bad to Accutane. However, most patients, under the care of their dermatologist, have no long time side effects.

Going up to 80mg on your second month, after starting on 40mg, is extremely high. Normally it is a much slower build up than that.

Keeping in mind also I'm on 10mg a day. My derm will never go higher. I actually have a dermatologist who respects the power of the drug. I would never get to 14000mg when I finish hopefully by July. More like 3600-4000mg

6 minutes ago, ScarRight said:

Oh wow, calling me a punk.

Um.. This is my second time on Accutane. The first regime was over ten years ago. There were no long term side effects. They all stopped when ceasing the drug.

I only have dry lips. I'm sure that would stop too.

Care to provide any actual statistics? Quoting Emma Stine, a celebrity, doesn't really count? Any peer reviewed studies?

As an academic, when you need to call people things like 'punk' you generally know they have a weak argument on offer.

I did say I am sorry to hear your body reacted bad to Accutane. However, most patients, under the care of their dermatologist, have no long time side effects.

Going up to 80mg on your second month, after starting on 40mg, is extremely high. Normally it is a much slower build up than that.

Most patients never report problems they have...

Accutane can kill the eye lubing gland, this, and things like bad night vision- are often permanent. However, ofc, keep trying your luck...

" Currently, there is no definitive method to restore the structure and function of damaged meibomian glands; thus, treatment options for isotretinoin-associated meibomian gland dysfunction are primarily palliative to manage patient symptoms. "

14 minutes ago, ScarRight said:

Oh wow, calling me a punk.

Um.. This is my second time on Accutane. The first regime was over ten years ago. There were no long term side effects. They all stopped when ceasing the drug.

I only have dry lips. I'm sure that would stop too.

Care to provide any actual statistics? Quoting Emma Stine, a celebrity, doesn't really count? Any peer reviewed studies?

As an academic, when you need to call people things like 'punk' you generally know they have a weak argument on offer.

I did say I am sorry to hear your body reacted bad to Accutane. However, most patients, under the care of their dermatologist, have no long time side effects.

Going up to 80mg on your second month, after starting on 40mg, is extremely high. Normally it is a much slower build up than that.

Back then high dose was standard treatment hit it hard and fast they said . Apologies for the punk word it sounded cool.

Some people take 120 mg to 180 mg per day the body builder on you tube comes to mind so 80 not that much really , what stopped me was the severe hair loss and dizziness good thing I might be in a wheel chair if continued.

1 minute ago, Gladiatoro said:

Back then high dose was standard treatment hit it hard and fast they said . Apologies for the punk word it sounded cool.

Some people take 120 mg to 180 mg per day the body builder on you tube comes to mind so 80 not that much really , what stopped me was the severe hair loss good thing I might be in a wheel chair if continued.

Which means they have no idea at all... not even today- how this drug works.

Horrible side effects are possible even with low doses. Important to note- there is NO SAFE dose of accutane.

4 minutes ago, Gladiatoro said:

Back then high dose was standard treatment hit it hard and fast they said . Apologies for the punk word it sounded cool.

Some people take 120 mg to 180 mg per day the body builder on you tube comes to mind so 80 not that much really , what stopped me was the severe hair loss good thing I might be in a wheel chair if continued.

I agree with you 100% on this. There is simply no need to go that high, with recent studies showing these high doses make very little difference in clearing acne.

Many derms still go that high and there is no need. It is a powerful drug that needs to be taken with caution and only for severe or persistent acne.

Is it a risk? Of course it is, but on 10mg a day, I have accepted the risk. Will I be on this long term? No, as I do agree, putting this into your body long term can't be a good thing.

Should there be heavier restrictions on prescription and closer monitoring? Absolutely!

Future generations WILL thank us on the work done here.

14 hours ago, ScarRight said:

The vast majority of patients have their side effects cease once Accutane has been stopped. The vast majority on this forum would tell you that. Sorry to hear if you had a bad experience. Starting on 40mg is a very high starting dose.

40mg per day used to be the low dosage. People that initially took this drug in the early 80s were literally guinea pigs. You are fortunate to be living in a much more informed time.This drug was probably being researched in the 70s. Those were very primitive times compared to today.
Doctors were the ones that had to report the birth defects when they started happening.

6 minutes ago, ScarRight said:

I agree with you 100% on this. There is simply no need to go that high, with recent studies showing these high doses make very little difference in clearing acne.

Many derms still go that high and there is no need. It is a powerful drug that needs to be taken with caution and only for severe or persistent acne.

Is it a risk? Of course it is, but on 10mg a day, I have accepted the risk. Will I be on this long term? No, as I do agree, putting this into your body long term can't be a good thing.

Should there be heavier restrictions on prescription and closer monitoring? Absolutely!

There are at least several very well researched, permanent side effects- meaning roaccutane has robbed of your health- permanently.

We still don't know even how it works exactly...

In very extreme acne cases, when all else fails, perhaps this is to be considered... but majority who take it, don't fall into this category.

Docs give this too easily, often not being honest on side effects.

Thos who take it, should be more carefully monitored, and as you say- on far lower doses.

I took 30 mg for 6 months and 20 mg for 2 months and have abnormal long-term side effects. My derm doesn't know about it and the other doctors haven't reported the side effects because they denied that it caused by Accutane. I think there is high number of undetected cases.

Did anyone try Progesterone? I think it could help....

11 minutes ago, guitarman01 said:

40mg per day used to be the low dosage. People that initially took this drug in the early 80s were literally guinea pigs. You are fortunate to be living in a much more informed time.This drug was probably being researched in the 70s. Those were very primitive times compared to today.
Doctors were the ones that had to report the birth defects when they started happening.

we are still all guinea pigs, since effects keep being added, and we don't even know how it works.

1 minute ago, sirhc30 said:

I took 30 mg for 6 months and 20 mg for 2 months and have abnormal long-term side effects. My derm doesn't know about it and the other doctors haven't reported the side effects because they denied that it caused by Accutane. I think there is high number of undetected cases.

Did anyone try Progesterone? I think it could help....

Exactly. It is difficult to report, and many will say "you are crazy, take valium" etc.

What effects do you have? There is no safe dose of tane, but it's true likelihood of very bad effects is higher on high doses.

it looks like 40 to 80 mg is still the standard dosage for an average weight male.
This is wrong. It should be minimum effective dosage.
How do you determine this?
How do you know how long to take it?
My derm insisted I continue to finish my course even after my acne had cleared up.
What type of guideline is followed for duration?

This is what was last submitted to the FDA by Roche. January 2010.
CLINICAL PHARMACOLOGY Isotretinoin is a retinoid, which when administered in pharmacologic dosages of 0.5 to 1.0 mg/kg/day (see DOSAGE AND ADMINISTRATION), inhibits sebaceous gland function and keratinization. The exact mechanism of action of isotretinoin is unknown.

6 minutes ago, fiksi said:

we are still all guinea pigs, since effects keep being added, and we don't even know how it works.
Exactly. It is difficult to report, and many will say "you are crazy, take valium" etc.

What effects do you have? There is no safe dose of tane, but it's true likelihood of very bad effects is higher on high doses.

Fatigue
Muscle Pain
Anxiety
Visual Snow/After Images/Double Images
IBS
Dry Skin
Dry Eyes/inflamed eyes

The symptoms get better very slowly. I took accutane 11 years ago...

10 minutes ago, guitarman01 said:

it looks like 40 to 80 mg is still the standard dosage for an average weight male.
This is wrong. It should be minimum effective dosage.
How do you determine this?
How do you know how long to take it?
My derm insisted I continue to finish my course even after my acne had cleared up.
What type of guideline is followed for duration?

This is what was last submitted to the FDA by Roche. January 2010.
CLINICAL PHARMACOLOGY Isotretinoin is a retinoid, which when administered in pharmacologic dosages of 0.5 to 1.0 mg/kg/day (see DOSAGE AND ADMINISTRATION), inhibits sebaceous gland function and keratinization. The exact mechanism of action of isotretinoin is unknown.

You're right, this is still used. But they're studies out there showing my low dose regime is just as effective. It has cleared my skin and I have stopped getting breakouts. My dermatologist said this will be the way of the future and the higher doses are slowly going out of style.

Hey people on this forum said my low dose regime was silly and too low and I should get a second opinion. I actually did ask my dermatologist after three months should I increase my dose to 20mg? He simply said no, it will make no difference to your acne.

My derm is an older man too. But he follows current research and trends and does care about patient safety.

12 minutes ago, sirhc30 said:

Fatigue
Muscle Pain
Anxiety
Visual Snow/After Images/Double Images
IBS
Dry Skin
Dry Eyes/inflamed eyes

The symptoms get better very slowly. I took accutane 11 years ago...

Remember dont mess with your skin NOT a good idea you will litteraly be going backwards.

3 minutes ago, ScarRight said:

You're right, this is still used.

Thats my point. Are they still using guidelines developed from the 70s?
That's how outdated this is. Just like the drug itself, and the fact they still don't know how it works as of the last decade.
Or at least they're not telling us.This is a closed case for them, it's going to take someone else to discover this now.
Their biggest concern is probably lost profit and any more disclosure of its mechanism of action could mean just that.

One really good poster on acne.org is alternative vista her long term sides are as usual dry everything in the end she eliminated citrus fruit from here diet something 3 rounds of tan couldnt do for her to get rid of her severe cystic acne.

Personally I think the antibiotics caused her long term health problems.