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Repairing the long-term damage from Accutane

 
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157
(@tanedout)

Posted : 02/09/2017 12:29 pm

4 hours ago, brendan452 said:

I don't see how finasteride will help anyone.
this is a dangerous drug with more serious side effects. are body's are already damaged and taking another drug with proven permanent side effects is not the answer please do not take this

But this sort of thinking is exactly the reason that people are still in this mess. Let's be brutally honest here - the side effects from accutane are basically permanent. There are people who've been in this mess 30+ years - I can think of a few on this thread who are around the 20 year mark. Coming up to 7 years for me.

It's pretty clear that if your body was going to revert back to normal it would've done so by now. It's going to take more than a green leaf smoothie and crossed fingers to get out of this mess unfortunately. Maybe you are happy to live the rest of your life impotent, feeling brain dead, or with chronically dry skin, but even if you are we've got all the markers for being massively more susceptible to chronic diseases. It's absolutely not healthy for our bodies to be in this state.

Ironically the micro-dose finasteride route comes from probably the only actual Doctor to have looked into this is depth (due to him himself being affected, so it was in his interest). And oh, he cured himself. Then so did at least 2 others using this method, so it should not be discounted.

I'm not taking this option off the table, and if I try it it will be at my own risk.

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50
(@ehohel)

Posted : 02/09/2017 4:22 pm

10 hours ago, Justdry said:
I wish we knew why it affects everyone so differently. Even within myself - I have a few areas of my face that do produce some oil and then large, large parts that don't produce any what so ever.

I just want a little bit of oil production back and i'll be fine. The rest of me is 100% healthy.

Just been reading about Taurine, did this help anyone's dry skin?

You could maybe try the low dose AI route. I've had massive oil production on my AI run, more than I had before accutane. Didn't last, but perhaps if you do low dose long enough it will.

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1804
(@truejustice)

Posted : 02/09/2017 4:29 pm

Question: Wasn't Roaccutane initially developed to treat a form of brain cancer?

Apparently during the process Roche discovered that it had a major effect on acne, so my questionis - wouldn't these cancer patients put on it have most of our problems too? Including chronically dry skin, light sensitivity, depression......the list goes on.

I'd consider the finasteride path if it meant a cure, I'm a 20 year sufferer. Don't think time will heal you folks, I had that belieffor so long - oh the body is magical and complex and wants to heal itself - after tane that's bullshit, perhaps it wants to healbut we've had cells altered yeah - that's the truth, as criminal as it is!!

If we'renot out of this mess within say thenext few years, I would start to prepare for the crushing blow,that many of your dreams will be crushed, that's how big an impact it's had on my life,of course I don't wish that on anyone but it's a reality and you're best to prepare yourself for it. Prepare yourself mentally for the disappointment of it all.

Like some articles say about tane, "dying for clear skin" or "lives ruined" - not far from the truth unfortunately for us.

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(@guitarman01)

Posted : 02/09/2017 9:34 pm

5 hours ago, TrueJustice said:

If we're are not out of this mess within next few years, I would start to prepare for the crushing blow that many of your dreams will be crushed, of course I don't wish that on anyone but it's a reality and you're best to prepare yourself for it.

Like some articles say about tane, "dying for clear skin" or "lives ruined" - not far from the truth....

Damn that was bleak. I would say if the mental symptoms seem to be getting the best of anyone, (and that can manifest itself in alot of different ways that a person might not even be aware of)I would seek help outside of this forum. Friends. Family. And for anyone that has insurance a neuropsychologist might be the type of doctor most willing to dive into the mental aspect of accutane sides. Dont think of them as just shrinks, they look at the possible neurological symptoms as well. They might be more willing of ordering test like PET or Spectral scans that maybe would have a higher sensitivity to detect any changes in the brain that might not be detected on a mri.

Accutane as chemo treatment basically reads the same as acne treatment. It says almost all of the side effects are reversible after stopping treatment.

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(@truejustice)

Posted : 02/09/2017 10:58 pm

4 hours ago, guitarman01 said:
Damn that was bleak. I would say if the mental symptoms seem to be getting the best of anyone, (and that can manifest itself in alot of different ways that a person might not even be aware of)I would seek help outside of this forum. Friends. Family. And for anyone that has insurance a neuropsychologist might be the type of doctor most willing to dive into the mental aspect of accutane sides. Dont think of them as just shrinks, they look at the possible neurological symptoms as well. They might be more willing of ordering test like PET or Spectral scans that maybe would have a higher sensitivity to detect any changes in the brain that might not be detected on a mri.

Accutane as chemo treatment basically reads the same as acne treatment. It says almost all of the side effects are reversible after stopping treatment.

I guess it does sound bleak when I read over it. I'm someone who you know, has a pretty good job, lives in a great country etc and I've seen my fair share of psychologists- they're all great for lending a sympathetic ear but nothing more than that. I'm just saying after 20 years, this shit takes its toll - there's a tipping point after 10 - 15 years, most of you aren't there yet and I hope you don't have to go that far with this shit fight.

Theres even been people on this forum who've wound up in a mental institution if I'm not mistaken. So when's the medical establishment going to take some responsibility and show accountability for this crap??
My mind boggles on that fact alone anyway, I can't keep thinking about the whole injustice or I'll fall deeper into a hole.
Maybe I should count my lucky stars that I've never had to go to a psych hospital.

I just hope we're out of the woods soon so you don't have to face that tipping point...

There was an older forum than this one about 10 years ago and I'm pretty sure none of the members contribute to this one, God only knows what happened to some of them??
This one lady Patti Lordes I think her name was, she was like 57 and had suffered for over 30 years - I still wonder what became of her situation......she copped some insane suffering that lady!!

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MemberMember
1804
(@truejustice)

Posted : 02/10/2017 2:18 am

Those who are on or who have tried Methylfolate - are there any side effects? is it ok for the average person to try it?

I've never had the gene test or anything, I'm just treating it as another supplement to try but will it have an effect on someone who doesn't have the gene mutation?

The list of things that methylfolate is responsible for in the body is quite remarkable so I figured why not give it a go.

Pls share info if I should be cautious though!!?

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(@justdry)

Posted : 02/10/2017 3:07 am

10 hours ago, ehohel said:
20 hours ago, Justdry said:
I wish we knew why it affects everyone so differently. Even within myself - I have a few areas of my face that do produce some oil and then large, large parts that don't produce any what so ever.

I just want a little bit of oil production back and i'll be fine. The rest of me is 100% healthy.

Just been reading about Taurine, did this help anyone's dry skin?

You could maybe try the low dose AI route. I've had massive oil production on my AI run, more than I had before accutane. Didn't last, but perhaps if you do low dose long enough it will.

im sorry for my ignorance, but what is AI ? When you say didnt last, you mean once you had stopped it went ?

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MemberMember
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(@justdry)

Posted : 02/10/2017 4:25 am

11 hours ago, TrueJustice said:

Question: Wasn't Roaccutane initially developed to treat a form of brain cancer?

Apparently during the process Roche discovered that it had a major effect on acne, so my questionis - wouldn't these cancer patients put on it have most of our problems too? Including chronically dry skin, light sensitivity, depression......the list goes on.

I'd consider the finasteride path if it meant a cure, I'm a 20 year sufferer. Don't think time will heal you folks, I had that belieffor so long - oh the body is magical and complex and wants to heal itself - after tane that's bullshit, perhaps it wants to healbut we've had cells altered yeah - that's the truth, as criminal as it is!!

If we'renot out of this mess within say thenext few years, I would start to prepare for the crushing blow,that many of your dreams will be crushed, that's how big an impact it's had on my life,of course I don't wish that on anyone but it's a reality and you're best to prepare yourself for it. Prepare yourself mentally for the disappointment of it all.

Like some articles say about tane, "dying for clear skin" or "lives ruined" - not far from the truth unfortunately for us.

Truejustice - i wouldn't say that's entirely true. Although i agree some peoples will be permanent - it will be different for others, for example, i had accutane level dry lips for 4 years post accutane, had to carry Vaseline with me everywhere, however, 2 years ago (after 4 years) they just stopped and now remain moist even in minus temperatures. After 4 years of dry lips i thought it was going to be permanent.

I still hold out some level of hope it will happen for my skin too.

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(@roland1968)

Posted : 02/10/2017 4:42 am

"im sorry for my ignorance, but what is AI ? When you say didnt last, you mean once you had stopped it went ?"

I think it is Aromatase inhibitor

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180
(@roland1968)

Posted : 02/10/2017 7:18 am

14 hours ago, TrueJustice said:

Question: Wasn't Roaccutane initially developed to treat a form of brain cancer?

Apparently during the process Roche discovered that it had a major effect on acne, so my questionis - wouldn't these cancer patients put on it have most of our problems too? Including chronically dry skin, light sensitivity, depression......the list goes on.

I'd consider the finasteride path if it meant a cure, I'm a 20 year sufferer. Don't think time will heal you folks, I had that belieffor so long - oh the body is magical and complex and wants to heal itself - after tane that's bullshit, perhaps it wants to healbut we've had cells altered yeah - that's the truth, as criminal as it is!!

If we'renot out of this mess within say thenext few years, I would start to prepare for the crushing blow,that many of your dreams will be crushed, that's how big an impact it's had on my life,of course I don't wish that on anyone but it's a reality and you're best to prepare yourself for it. Prepare yourself mentally for the disappointment of it all.

Like some articles say about tane, "dying for clear skin" or "lives ruined" - not far from the truth unfortunately for us.

Yes I think those cancer patients suffer from the same sides. But if you have cancer and you face death then you might be willing to accept more permanent side effects. What is acne compared to brain cancer? The risk-reward ratio is just different.

I am 16 years post tane. Many of my dreams have crushed already. Even if I would be cured tomorrow, I lost so many years. So many experiences, that I could not make. And the most likely future is, that my problems will continue. There will be no cure tomorrow. There will be no bright future. Just another 30 years where I die a million deaths before they finally plant me.

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1803
(@guitarman01)

Posted : 02/10/2017 10:57 am

I still think the mental sides might be due to some chronic form of inflammation. Which in turn can cause restricted blood flow which could eventually cause some sort of nerve desensitization.

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(@walden-rev)

Posted : 02/10/2017 2:46 pm

So big news, got an reply from Dr Pezzi who used fin to cure his sides

Yes, I did, and the effects were amazing for a while, but in retrospect, considering the years of negative effects secondary to finasteride (Propecia), I wouldn't do it again because there are other ways to restore sensation (they do nothing for size, but there are other ways to address that).

Kevin

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158
(@accuity_drane)

Posted : 02/10/2017 3:06 pm

3 hours ago, Walden Rev said:

So big news, got an reply from Dr Pezzi who used fin to cure his sides

Yes, I did, and the effects were amazing for a while, but in retrospect, considering the years of negative effects secondary to finasteride (Propecia), I wouldn't do it again because there are other ways to restore sensation (they do nothing for size, but there are other ways to address that).

Kevin

Well, that's interesting because I was doing more research into individuals with Post Finasteride Syndrome. Apparently, studies found individuals with PFS have upregulated androgen receptors. This implies that something has gone awry downstream, as one would THINK that upregulated androgen receptors would cause "hyper-masculine" effects. In fact, these people obviously have quite the opposite effects. Now, reconcile that information with Dr. John Crisler claiming that some men find relief in using HIGH dose testosterone replacement therapy (but not regular dose).

So this is how I make sense of it in my own simple-minded way. Take regular-dose Propecia ----> Upregulation of androgen receptors; downregulation of downstream mechanism----> Take high-dose testosterone ----> (SPECULATION ALERT) Downregulation of androgen receptors; upregulation of downstream mechanisms.

TL;DR: It appears as if "regular-dose" Finasteride /Propecia already has the same effects as we would expect from microdosing, based on the research that shows the drug UPREGULATES androgen receptors. (Yet, symptoms of hypogonadism still happen.)

In light of that email and the research I recently read, I will not be microdosing Accutane or Propecia. But I will likely try microdosing Prozac, as it can upregulate neurosteroids, which are depleted in individuals with PFS. When Accutane/Propecia goes in one direction, I run the other way. lol

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(@tanedout)

Posted : 02/10/2017 3:31 pm

43 minutes ago, Walden Rev said:

So big news, got an reply from Dr Pezzi who used fin to cure his sides

Yes, I did, and the effects were amazing for a while, but in retrospect, considering the years of negative effects secondary to finasteride (Propecia), I wouldn't do it again because there are other ways to restore sensation (they do nothing for size, but there are other ways to address that).

Kevin

Wow great to get a response from him - he doesn't elaborate on what these alternative methods might be though, did you respond to him and ask?

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MemberMember
47
(@walden-rev)

Posted : 02/10/2017 3:41 pm

6 minutes ago, tanedout said:
Wow great to get a response from him - he doesn't elaborate on what these alternative methods might be though, did you respond to him and ask?

I asked him to have a look a this 460 page forum. Give us some directions on which we can sail some new routes.

if i get an reply ill post it here

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MemberMember
1803
(@guitarman01)

Posted : 02/10/2017 3:50 pm

So alot of us have eye floaters. alot of people with sjogren's also have eye floaters. Has anyone actually had their eye floaters confirmed by a optometrist? apparently there is a test for this. I was looking at some sjogren's symptoms and there is a lactoferrin tear test they use to help diagnosis sjogrens. If accutane was able to permanently affect lactoferrin levels, this might be a very valuable test to take. If this came back abnormal and was the cause of floaters or vision problems, this could be pinned to accutane.

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MemberMember
50
(@ehohel)

Posted : 02/10/2017 4:42 pm

5 hours ago, guitarman01 said:

I still think the mental sides might be due to some chronic form of inflammation. Which in turn can cause restricted blood flow which could eventually cause some sort of nerve desensitization.

I do agree to his, cortisol steroids made me feel 100% normal while taking them. This includes all brainfog going away, memory was 20x better, and instant "processing" was normal. But I'm not interested in taking them forever and getting the massive side effects associated with that.

1 hour ago, ACCUiTy_drANE said:
Well, that's interesting because I was doing more research into individuals with Post Finasteride Syndrome. Apparently, studies found individuals with PFS have upregulated androgen receptors. This implies that something has gone awry downstream, as one would THINK that upregulated androgen receptors would cause "hyper-masculine" effects. In fact, these people obviously have quite the opposite effects. Now, reconcile that information with Dr. John Crisler claiming that some men find relief in using HIGH dose testosterone replacement therapy (but not regular dose).

So this is how I make sense of it in my own simple-minded way. Take regular-dose Propecia ----> Upregulation of androgen receptors; downregulation of downstream mechanism----> Take high-dose testosterone ----> (SPECULATION ALERT) Downregulation of androgen receptors; upregulation of downstream mechanisms.

TL;DR: It appears as if "regular-dose" Finasteride /Propecia already has the same effects as we would expect from microdosing, based on the research that shows the drug UPREGULATES androgen receptors. (Yet, symptoms of hypogonadism still happen.)

In light of that of that email and the research I recently read, I will not be microdosing Accutane or Propecia. But I will likely try microdosing Prozac, as it can upregulate neurosteroids, which are depleted in individuals with PFS. When Accutane/Propecia runs one way, I run the other. lol

I mean I've been strongly considering roiding for anabolic purposes. What kind of doses are you thinking of TRT?

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MemberMember
158
(@accuity_drane)

Posted : 02/10/2017 6:15 pm

3 hours ago, ehohel said:
What kind of doses are you thinking of TRT?
If I recall correctly, it has been noted that sometimes PFS men respond to doses of testosterone 50% higher than normal TRT. So if the average TRT dose is 150 mg per week, we should theoretically shoot for 200 mg - 250 mg per week. So, possibly a "cruising" dose. I wouldn't jump to bodybuilding doses, or you're just asking for more imbalances. In fact, Dr. John Crisler compares the PFS condition to the phenomenon in which someone does a steroid cycle and never quite recovers to normal. If anyone is susceptible to that, it's probably us. So we should keep doses reasonable, especially if short-term treatment is the goal. (In terms of rebalancing androgen receptor activity, who knows if longterm or short term treatment should be the goal.)

There are a few legitimate online clinics that legally prescribe T and monitor blood levels. Living in New York a northeastern state, I'd have to go through those channels because I don't have access to blood testing facilities otherwise. These clinics will hopefully have doctors who have experience in treating PFS.

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1804
(@truejustice)

Posted : 02/10/2017 7:48 pm

4 hours ago, Walden Rev said:
I asked him to have a look a this 460 page forum. Give us some directions on which we can sail some new routes.

if i get an reply ill post it here

He seems to be all about fixing erectile dysfunction correct?

Do his methods extend beyond that into fixing depression, fatigue, light sensitivity etc etc??

If he is all about ED I hope you guys get some benefit- touch wood ( no pun intended :) )
that I never get effected in that region!

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148
(@oli-girl)

Posted : 02/10/2017 9:14 pm

6 hours ago, Walden Rev said:

So big news, got an reply from Dr Pezzi who used fin to cure his sides

Yes, I did, and the effects were amazing for a while, but in retrospect, considering the years of negative effects secondary to finasteride (Propecia), I wouldn't do it again because there are other ways to restore sensation (they do nothing for size, but there are other ways to address that).

Kevin

Glad after all these years, he still responds to Accutane suffers and tries to help!

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183
(@monsterdiesel)

Posted : 02/10/2017 10:59 pm

Retinoic acid receptors are interesting in that they upregulate when stimulated. I thinking of this the other night. Why do even small amounts of vitamin A cause symptoms? Is it because our receptors are upregulated to even small doses of vitamin A are perceived as toxic?

In this case, would a RA receptor antagonist help? Beta-carotene in high doses is converted to both ATRA and RA antagonists so this could be one avenue.

Another theory is that our livers cannot store any vitamin A so any amount we eat spills into the circulation unbound to RBP and thus, cause toxicity effects.

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MemberMember
960
(@tryingtohelp2014)

Posted : 02/11/2017 12:36 am

Accutane = FOXO in the nucleus causing all of the epigenetic problems

Our goal is to get FOXO OUT of the nucleus.

you can do this by promoting IGF-1 or Insulin..... eat a tub of ice cream... shoot some hormones or peptides that promote IGF-1....  ONLY 3 minerals are capable of promoting PI3k/AKT they are copper, zinc or cadmium... with CU+2 being the most potent.     copper also has that inverse relationship with vitamin A in the liver.  it  raises the serum retinol, while lowering the liver esters.

These two pictures are almost scary....

2017-02-08_0652.png

2017-02-10_2333.png

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MemberMember
183
(@monsterdiesel)

Posted : 02/11/2017 12:53 am

23 minutes ago, tryingtohelp2014 said:

Accutane = FOXO in the nucleus causing all of the epigenetic problems

Our goal is to get FOXO OUT of the nucleus.

you can do this by promoting IGF-1 or Insulin..... eat a tub of ice cream... shoot some hormones or peptides that promote IGF-1....  ONLY 3 minerals are capable of promoting PI3k/AKT they are copper, zinc or cadmium... with CU+2 being the most potent.     copper also has that inverse relationship with vitamin A in the liver.  it  raises the serum retinol, while lowering the liver esters.

These two pictures are almost scary....

2017-02-08_0652.png

2017-02-10_2333.png

In picture B, you can see that turning on FOXO is mediated by retinoic acid receptors (RAR) induced by isotretinoin.  In my opinion, our continued ingestion of vitamin A and/or liver stores are maintaining that activation going after we stopped accutane.  Hence the idea of using a RAR antagonist to put the brakes on the whole thing.

I used IGF-1 injections for a few weeks in an attempt to fix my joints.  I can assure you it did nothing.  I also started drinking a lot of milk thinking I could turn foxo off again.  I still eat yogurt/kefir all the time with this in time.  Mind you, dairy has vitamin a so i keep poisoning myself.  I really should stop.

Copper always makes me.feel bad.  If it raises serum retinol levels, then that explains why.

How do you guys react to copper?

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MemberMember
183
(@monsterdiesel)

Posted : 02/11/2017 1:12 am

FOXO1 activation is persistant in vitamin D deficiency so taking Vit D might make you feel a little better. It does for me anyway.

https://www.ncbi.nlm.nih.gov/pubmed/26462119

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MemberMember
960
(@tryingtohelp2014)

Posted : 02/11/2017 1:59 am

1 hour ago, MonsterDiesel said:
In picture B, you can see that turning on FOXO is mediated by retinoic acid receptors (RAR) induced by isotretinoin. In my opinion, our continued ingestion of vitamin A and/or liver stores are maintaining that activation going after we stopped accutane. Hence the idea of using a RAR antagonist to put the brakes on the whole thing.

I used IGF-1 injections for a few weeks in an attempt to fix my joints. I can assure you it did nothing. I also started drinking a lot of milk thinking I could turn foxo off again. I still eat yogurt/kefir all the time with this in time. Mind you, dairy has vitamin a so i keep poisoning myself. I really should stop.

Copper always makes me.feel bad. If it raises serum retinol levels, then that explains why.

How do you guys react to copper?

so many things are inter-related here. i believe there is something acting on the FOXO for sure... be it stored in the liver, or in the adipose tissues... or micro amounts stuck to the skin receptors. i think the main thing is to make sure its bio-available copper. maybe the zinc with keep the retinol bound to RBP. maybe a cocktail.

eat a shit ton of cashews...sesame seeds... something with a higher amount of copper than zinc. get it in the circulation and then bind it or destroy it... taurine...vitamin D etc

the very end of this video is what we need to do... so our cells stop getting destroyed. Cu also stimulate the RAS pathway

A Novel Role for Copper in Ras/Mitogen-Activated Protein Kinase Signaling

http://mcb.asm.org/content/32/7/1284.full

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