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Repairing the long-term damage from Accutane

 
MemberMember
57
(@doctorcolumbus)

Posted : 11/11/2020 12:27 am

8 hours ago, TrueJustice said:

Thanks for sending

the link reads well Ill admitand it could be good I guess, Id research more though.

still when I google it,all I can see is its for pets??

what brands are best?

Yes some users use the pet versions, it does not matter so much. Personally i get mine from ebay and then i take a nootropic version. So i know the intention of the product. I dont know which brand is best and the consensus is that it should be free of impuritys, thats the most important.

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MemberMember
1804
(@truejustice)

Posted : 11/13/2020 12:13 am

What led you to taking this product in particular?

what are your underlying issues youre trying to resolve? What happens when you stop taking methylene blue? Wont your problems still exist?

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MemberMember
1
(@ronnie99)

Posted : 11/15/2020 1:11 am

On 11/8/2020 at 5:00 PM, TrueJustice said:

Yes they do. I thought that was my issue when I read about HPA dysfunction, we did some correcting about 12 months ago but definitely not my main issue

Kinesiologist can only do so much in the way of stress etc, if your home life sucks or job sucks for example and yourestressed all the time, its up to the individual to manage that. I only make this point because cortisol and stress lvls are a critical component to managing HPA axis

But yes, if they diagnose dysfunction they can definitely help out, help adrenals etc

My biggest obstacle is still with gut - cant completely correct dysfunction and still get acid reflux. Tane at this stage has permanently altered my gut, I would never have admitted this 4years ago but after seeing everyone from gastroenterologist to kinesiologist and not being able to fix it,what else can I conclude....

How did they find out your HPA Axis was working properly ?

Hi Guys,

I beleive our problem stems from the Hypothalamus or the Pitutary gland, there is a dysfunction there and there is a cascade of issues that then downstreams.

If we bring back these to areas close to homestosis then the improvement in symptoms will follow.

One hormone in the hypothalamus is Grow Hormone. I beleive if we run a short course say 4-6 weeks, 80% will see our symptoms improve dramatically.

Also the Gonadotropinreleasing hormone in the hypthalamus is very important for most of our symptoms.

Whats your thoughts ?

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MemberMember
1804
(@truejustice)

Posted : 11/15/2020 2:32 am

I asked kinesiologist and he said weve addressed it already - that was 12 months ago

With what youve suggested above, who will you be seeing to help you diagnose and treat?

For me, after years of treating things and ruling this and that out, Im still thinking theres an autoimmune issue at play, for me its chronic inflammation. In the body I can handle it - keep moving, exercise, eat well...

In the brain is the worse issue - fatigue, depression, bad sleep, light sensitivity and on and on. Take all the fish oil you want, it wont go, take turmeric, it wont go....

Im curious on the methylene blue but I need to know what Doctorcolumbus is addressing specifically??how many years he is post tane, how many other things hes rulled out already.....Id rather not take it if its just another fad supplement that doesnt work

The other thing Im keen to learn more on is the water fasting but again need to know if it can correct autoimmune issues. Lets say our issue is with HPA - would water fasting do anything to help? I doubt it...

See how addressing all this shit is mind boggling.....the years Im owed....

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MemberMember
1
(@ronnie99)

Posted : 11/15/2020 4:34 am

2 hours ago, TrueJustice said:

I asked kinesiologist and he said weve addressed it already - that was 12 months ago

With what youve suggested above, who will you be seeing to help you diagnose and treat?

For me, after years of treating things and ruling this and that out, Im still thinking theres an autoimmune issue at play, for me its chronic inflammation. In the body I can handle it - keep moving, exercise, eat well...

In the brain is the worse issue - fatigue, depression, bad sleep, light sensitivity and on and on. Take all the fish oil you want, it wont go, take turmeric, it wont go....

Im curious on the methylene blue but I need to know what Doctorcolumbus is addressing specifically??how many years he is post tane, how many other things hes rulled out already.....Id rather not take it if its just another fad supplement that doesnt work

The other thing Im keen to learn more on is the water fasting but again need to know if it can correct autoimmune issues. Lets say our issue is with HPA - would water fasting do anything to help? I doubt it...

See how addressing all this shit is mind boggling.....the years Im owed....

Im doing some of my own tests here through Nutripath, and then I got a Endocronoligist here, and I got two people in the USA, they are not certified but they know alot about hormones etc.

I beleive you can confirm if you have inflammation through testing the cytokine panelinterlukin bio markers, specificallyinterlukin 6. Have you done a inflammation test ?

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MemberMember
1804
(@truejustice)

Posted : 11/16/2020 2:52 pm

Good luck - I really hope you make great progress working with endocrinologist. I saw one 15 years ago who ran some tests but concluded nothing - ended up putting me on selenium supplement.

Ill double check with kinesiologist that theres no more work to do around HPA. My practitioner I trust and at the end of the day I take their word for it

I wonder if theres an imaging test for HPA dysfunction?? -that would be a good test to take if bloods come back ok

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MemberMember
57
(@doctorcolumbus)

Posted : 11/17/2020 2:47 am

On 11/15/2020 at 8:32 AM, TrueJustice said:

I asked kinesiologist and he said weve addressed it already - that was 12 months ago

With what youve suggested above, who will you be seeing to help you diagnose and treat?

For me, after years of treating things and ruling this and that out, Im still thinking theres an autoimmune issue at play, for me its chronic inflammation. In the body I can handle it - keep moving, exercise, eat well...

In the brain is the worse issue - fatigue, depression, bad sleep, light sensitivity and on and on. Take all the fish oil you want, it wont go, take turmeric, it wont go....

Im curious on the methylene blue but I need to know what Doctorcolumbus is addressing specifically??how many years he is post tane, how many other things hes rulled out already.....Id rather not take it if its just another fad supplement that doesnt work

The other thing Im keen to learn more on is the water fasting but again need to know if it can correct autoimmune issues. Lets say our issue is with HPA - would water fasting do anything to help? I doubt it...

See how addressing all this shit is mind boggling.....the years Im owed....

its for me 12 years ago.

My current problems are mainly energy. Some things like reduced libido were resolved with time, i wake up every morning with morning wood now, so no worries for me there anymore. In the first years i was really skinny, could not gain any weight, did some RSO and now im too fat with no muscles, when i was skinny i lost all my muscles.

So, i tried alot of things, like alot. What my focus now is: I sleep very light, energy through the day.

Im going into the anti-aging route.

Methylene blue is one but now im interested in Dr Sinclair

Nicotinamide mononucleotide (or NR).

Methylene Blue

Metformin (or Berberine)

 

This will be my stack for the next months, Dr Sinclair is pretty far in the anti-aging and also has a podcast with Joe Rogan. I want to fix my head and energy and im all good, it seems that the stack is a pretty good shot at it as i consider the accutane a chemo drug which made me a couple of years older in just 5 months.

 

 

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MemberMember
1
(@ronnie99)

Posted : 11/17/2020 2:57 am

6 minutes ago, Doctorcolumbus said:

its for me 12 years ago.

My current problems are mainly energy. Some things like reduced libido were resolved with time, i wake up every morning with morning wood now, so no worries for me there anymore. In the first years i was really skinny, could not gain any weight, did some RSO and now im too fat with no muscles, when i was skinny i lost all my muscles.

So, i tried alot of things, like alot. What my focus now is: I sleep very light, energy through the day.

Im going into the anti-aging route.

Methylene blue is one but now im interested in Dr Sinclair

Nicotinamide mononucleotide (or NR).

Methylene Blue

Metformin (or Berberine)

 

This will be my stack for the next months, Dr Sinclair is pretty far in the anti-aging and also has a podcast with Joe Rogan. I want to fix my head and energy and im all good, it seems that the stack is a pretty good shot at it as i consider the accutane a chemo drug which made me a couple of years older in just 5 months.

 

 

based on your symptoms, I would do a Thyroid extensive test measuring all thyroid markers, as GPs just do a TSH test, and if you come within range they say your thyroid is good. But there are many instances were a person can have Hperthyroidism or Hypothyroidism and there TSH is still in range, its what is getting in the cells thats more important, check T3, T3, Free T3, Free T4, Reverse T3, that would give you a better picture.

But from your symptoms I would suspect a form of Hypothyrodism.

 

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MemberMember
1804
(@truejustice)

Posted : 11/17/2020 4:25 pm

Ronnie99

what about water fasting?

why wouldnt that work? That video sounds convincing enough - the guy who conducts them states hes helped tane victims

trying to determine next path some of us might take

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MemberMember
1
(@ronnie99)

Posted : 11/17/2020 10:01 pm

5 hours ago, TrueJustice said:

Ronnie99

what about water fasting?

why wouldnt that work? That video sounds convincing enough - the guy who conducts them states hes helped tane victims

trying to determine next path some of us might take

Yes that could work, though ive heard a few times longwater fasting can make things worse or bring on new problems.

 

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MemberMember
3
(@quinc)

Posted : 11/18/2020 3:50 am

On 11/1/2020 at 3:34 AM, TrueJustice said:

It could be argued it has indeed left the system long ago

That the reason we dont get acne any more is that it has dried out the sebaceous glands hence less oil.

Would have been good thoughif this was all worked out 40 years ago before it was ever put on the market - unfortunately weve all just been guinea pigs really

We need to reverse that process then. Since Accutane shrinks the sebaceous glands, how do you increase/proliferate them? Ive found this:

ARARantagonist calledCD 2665.

https://www.sciencedirect.com/science/article/pii/S0022202X15407754

Weve all explored the early on setgeneticbaldness route, and the diffuse loss of hair is inconsistent with that. And with those who dont have family patterns that match our hair loss. Plus girls all over this thread face the same exact issues and they rarely genetically bald.

The immune system might be affected by Accutane but this clearly isnt the case for everybody. Is scarring alopecia was a problem, a bunch of us would have been diagnosed. Unless your scalp is red and itchy constantly, I dont think its that.

So what does that leave? the sebaceous glands are way more important to hair growth than we realize. We need to explore this route. Find ways to increase production of sebum and activate the sebaceous glands

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MemberMember
120
(@pido)

Posted : 11/18/2020 5:52 am

How about just testosterone or some other androgen to get sebum back? This is what I've been thinking about, but I don't want to jump on it right yet.

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MemberMember
2
(@isojim)

Posted : 11/18/2020 11:20 am

On 11/15/2020 at 9:41 AM, Ronnie99 said:

How did they find out your HPA Axis was working properly ?

Hi Guys,

I beleive our problem stems from the Hypothalamus or the Pitutary gland, there is a dysfunction there and there is a cascade of issues that then downstreams.

If we bring back these to areas close to homestosis then the improvement in symptoms will follow.

One hormone in the hypothalamus is Grow Hormone. I beleive if we run a short course say 4-6 weeks, 80% will see our symptoms improve dramatically.

Also the Gonadotropinreleasing hormone in the hypthalamus is very important for most of our symptoms.

Whats your thoughts ?

I am using HGH right now. Brain fog and fatigue improved. but libido and sleepgot better very slight.

 

For few days my skin get oily and then came back to normal.

 

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MemberMember
3
(@quinc)

Posted : 11/18/2020 5:18 pm

Just curious. In all this time and this entire thread, no ones figured out why hair loss, joint pain, etc occurs? I read about taurine and copper and all that crap but did nothing come from it?

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MemberMember
1
(@ronnie99)

Posted : 11/18/2020 5:22 pm

6 hours ago, isojim said:

I am using HGH right now. Brain fog and fatigue improved. but libido and sleepgot better very slight.

 

For few days my skin get oily and thrn came back to normal.

 

 

How long are you using it ?

What is your dosage and what brand are you using ?

 

 

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MemberMember
57
(@doctorcolumbus)

Posted : 11/19/2020 12:55 am

On 11/17/2020 at 8:57 AM, Ronnie99 said:

based on your symptoms, I would do a Thyroid extensive test measuring all thyroid markers, as GPs just do a TSH test, and if you come within range they say your thyroid is good. But there are many instances were a person can have Hperthyroidism or Hypothyroidism and there TSH is still in range, its what is getting in the cells thats more important, check T3, T3, Free T3, Free T4, Reverse T3, that would give you a better picture.

But from your symptoms I would suspect a form of Hypothyrodism.

 

If it was that easy.

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MemberMember
3
(@quinc)

Posted : 11/19/2020 3:15 am

[Edited link out]

created a forum to specifically talk about Accutane sides. Not sure if against the rules but I thought it would be helpful if we focused our efforts somewhere tailored to the cause.

 

well the link was edited out but please message me if you need it

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Pido, Pido and Pido reacted
MemberMember
3
(@quinc)

Posted : 11/19/2020 6:11 pm

I did some research into what exactly Accutane does to the body and came across this really interesting study about the effects of some antagonists on retinoic acids, including isotretinoin.

https://www.sciencedirect.com/science/article/pii/S0022202X15409649

this led me to this study which mentions how RAR antagonists may be of potential use as topical agents in preventing or treating mucocutaneous toxicity associated with oral retinoids like isotretinoin.
https://booksc.xyz/book/5093905/b369fd

They used AGN 193109, a pan antagonist of retinoic acid to actually reverse and treat the toxicity caused by isotretinoin.

 

Here is a study done on the toxic effects of isotretinoin and how a lot of it stems from the mucocutaneous toxicity that it creates.

https://www.karger.com/Article/PDF/248878

From what Ive read in this thread weve been focusing on eliminating existing vitamin A in our body that mimics the effects of vitamin A toxicity or the other extreme, were trying to repair the long term damage thats been inflicted by Accutane,which is not in the body anymore, andits effects on our cell functions.

I cant say whats more valid unfortunately, but what I can say is that theres proof in the RAR antagonist study that a topical formula of AGN 193109 can treat or reverse the effects of isotretinoin. Reverse. Thats huge. So even if we have Accutane stuck in our bodies or just left over damage, it can be treated.

Some of those lucky enough to have it reverse on its own probably go through a healing process. That processcan beaccelerated by anRAR antagonist. The unlucky ones like us are years into the side effects with minimal improvement. Dry lips, dry skin, hair loss, joint pain, stomach issues, etc. maybe we are healing but its so slow it doesnt matter. At this point, why not try something new that has actual evidence behind it unlikesupplements and liver detoxes?

Anyways, I think more research needs to be done on what is the safest and most effective RAR antagonist topical that can do the most against isotretinoin.

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MemberMember
1804
(@truejustice)

Posted : 11/20/2020 12:13 am

These are the sort of documents you pull out when yourGP claims Accutane didnt cause any issues

Like bullshit it didnt, check these reports out!!

Good stuff, thanks for sharing, Ill show my kinesiologist the last one and see what he says. Hes found issues with my Vit A before but weve jumped all over the place and worked on addressing other things over the time Ive seen him

Might be good to get back to checking Vit A and D and how they might be working....or not working

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MemberMember
3
(@quinc)

Posted : 11/20/2020 9:17 am

8 hours ago, TrueJustice said:

These are the sort of documents you pull out when yourGP claims Accutane didnt cause any issues

Like bullshit it didnt, check these reports out!!

Good stuff, thanks for sharing, Ill show my kinesiologist the last one and see what he says. Hes found issues with my Vit A before but weve jumped all over the place and worked on addressing other things over the time Ive seen him

Might be good to get back to checking Vit A and D and how they might be working....or not working

Thanks for following up on this. I think our biggest problem is that no one really knows how isotretinoin works so we run into the issue of figuring things out to counter its mechanism and effects. But slowly we can figure it out with enough people asking their doctors.

to add, isotretinoin doesnt solely bind to RAR or RAX receptors, theres speculation about FOXO1 interacting with isotretinoin and causing the adverse effects were all familiar with. Isotretinoin seems to upregulate expression of FOXO. Ive looked into compounds that downregulates it and found that metformin could potentially help here. Might be something to look into. Here are the relevant articles:

https://pubmed.ncbi.nlm.nih.gov/30240097/

https://www.researchgate.net/publication/327812061_Effects_of_metformin_on_the_PI3KAKTFOXO1_pathway_in_anaplastic_thyroid_Cancer_cell_lines

 

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MemberMember
1804
(@truejustice)

Posted : 11/20/2020 6:02 pm

Does Metformin decrease lactic acid does anyone know?

recently the kinesiologist picked up on some of my head pressure is lactic acid related

Some days though when my whole body feels tired etc,it feels like lactic acid fatigue all over coupled with inflammation

good articles!!

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MemberMember
19
(@anna-nim)

Posted : 11/21/2020 12:58 am

Today I myson finally sawa Urologist at the fancy pants Urology Partners of North Texas(to diagnose, not "cure"). Head Dr told my son it was probably in his head.. refused to do ANY blood work or tests of ANYkind. Cursory glance at old bloodwork. Said his penis/testicleswere normal size (he lost a good 2 inches from this). Dr said henever heard of ANY patients with ED from ISO (or Finn for that matter). Couldn't recommend any otherUro to diagnose him. Nothing, but a script of Cialis..My son said he literally almost beat the man up. Livid. Said the only he got from the visit was a 'cold dick' from the man touching it. LOL. MFkR.

(As a reminder, my son was given a VERY high dose of Accutane, has been off over a year, has an assortment of health issues from this drug. When I first found out about this, I hoped he would improve, and a few things did, but not enough.)

His T has slightly improved from 471 to 523. (Not enough, clearly), still has a hoist of erectile dysfunction related issues, ALWAYS tired,working at Petco for a mere8 hours shift leaves him exhausted the ENTIRE next day, easily injured, fatigue, anxiety, easily angered, poor attention span (he is failing online school), eye issues (optic neuritis), photosensitivity, easily injured body, stomach issues (one area that did improve), tinitus, high Calcium, low alkaline phosphatase. IDK about autoimmune issues yet, intrusive thoughts...etc

I am also trying to spread the word about theno-quite-enough, but anything helpsMHRA UK inquiry that was resurrected.

(Fill it out here: https://www.surveys.mhra.gov.uk/5fa2caf33414eb1dd21958ad ) They are only considering more warnings/checklists. No ban on under 18's, no stricter requirements for prescribing. Nothing. Defeating as hell. Depressing as knowing there is little that can be done for the victims-the most important to me being my perfectly healthy prior to this ONLY SON.

There is not stopping the pharma monster.

No end to the machine of the industry. It is designed to protect itself. It's need to feed on money and people.

There is no end to greed. No end to the denial.

Our children's LIVES mean nothing.

The damaged lives mean NOTHING.

This drug has been out since the 80's, ironically why I thought it was mostly safe-it just proves how forsaken we are all. 38 years on the market, in 38 years I will be dead. No cutting out carrots and magical herb from Mars is going to fix it. Medical studies mean nothing. Roche pulled out of the US for a reason, they knew the deal..but yet, they let generics in the USA and sell this POSION elsewhere. They will be damaging young adults brains and bodies until I am dead and gone, and my son will suffer the effects long after I am gone.

A Plague on both their houses...

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MemberMember
1
(@ronnie99)

Posted : 11/21/2020 7:02 pm

On 11/20/2020 at 10:11 AM, Quinc said:

I did some research into what exactly Accutane does to the body and came across this really interesting study about the effects of some antagonists on retinoic acids, including isotretinoin.

https://www.sciencedirect.com/science/article/pii/S0022202X15409649

this led me to this study which mentions how RAR antagonists may be of potential use as topical agents in preventing or treating mucocutaneous toxicity associated with oral retinoids like isotretinoin.
https://booksc.xyz/book/5093905/b369fd

They used AGN 193109, a pan antagonist of retinoic acid to actually reverse and treat the toxicity caused by isotretinoin.

 

Here is a study done on the toxic effects of isotretinoin and how a lot of it stems from the mucocutaneous toxicity that it creates.

https://www.karger.com/Article/PDF/248878

From what Ive read in this thread weve been focusing on eliminating existing vitamin A in our body that mimics the effects of vitamin A toxicity or the other extreme, were trying to repair the long term damage thats been inflicted by Accutane,which is not in the body anymore, andits effects on our cell functions.

I cant say whats more valid unfortunately, but what I can say is that theres proof in the RAR antagonist study that a topical formula of AGN 193109 can treat or reverse the effects of isotretinoin. Reverse. Thats huge. So even if we have Accutane stuck in our bodies or just left over damage, it can be treated.

Some of those lucky enough to have it reverse on its own probably go through a healing process. That processcan beaccelerated by anRAR antagonist. The unlucky ones like us are years into the side effects with minimal improvement. Dry lips, dry skin, hair loss, joint pain, stomach issues, etc. maybe we are healing but its so slow it doesnt matter. At this point, why not try something new that has actual evidence behind it unlikesupplements and liver detoxes?

Anyways, I think more research needs to be done on what is the safest and most effective RAR antagonist topical that can do the most against isotretinoin.

Yes agree, what is the best antagonist we could tryat low dosage, most probably has to come from China from a very good rated lab.

 

 

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MemberMember
3
(@quinc)

Posted : 11/22/2020 1:36 am

6 hours ago, Ronnie99 said:

Yes agree, what is the best antagonist we could tryat low dosage, most probably has to come from China from a very good rated lab.

 

 

The AGN topical seems promising. A bit pricey but worth a try.

Another thing of interest I found for those of the opinion that Accutane is stored in the liver and remains stuck because of lack of bile flow:

 

https://www.hindawi.com/journals/crihep/2019/9270827/

Specifically this part:

 

By contrast, when14C-isotretinoin was administered to two patients with t-tube drainage of bile, there was a trend towards shortened half-lives, suggesting enterohepatic circulation of isotretinoin metabolites [15]. Our case is unique as the sequestering agent, cholestyramine, was administered to reduce isotretinoin toxicity (Figure1, arrow 4), associated with the potential accumulation of toxic metabolites recycling in the enterohepatic system. Serum ALT levels subsequently dropped by almost 50% within 2 weeks of starting cholestyramine (Figure1). The association between normalized liver function tests (LFTs) and cholestyramine therapy remains uncertain; however, ALT levels no longer decreased after discontinuation of cholestyramine 2 months later (Figure1, arrow 5).

If this study is right, isotretinoin metabolites may be circulating through a recycling process in the enterohepatic system, and who knows for how long they remain?

Take a look at this chart:

https://imgur.com/gallery/AQPTUBD

 

It was only the addition of cholestryamine that ALT leveled off. From number 3 to number 4, approximately hundred days past and yet ALT remained high. Up until the addition of cholestryamine.

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MemberMember
57
(@doctorcolumbus)

Posted : 11/22/2020 1:42 am

6 hours ago, Ronnie99 said:

Yes agree, what is the best antagonist we could tryat low dosage, most probably has to come from China from a very good rated lab.

 

 

What about dosage?

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