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Repairing the long-term damage from Accutane

 
MemberMember
75
(@colinboko)

Posted : 01/04/2018 3:21 pm

43 minutes ago, fiksi said:
Welcome to tane world. Tane affects every hormone there is... from testosterone and thyroid onwards. It is now known it affects pituitary hormones as well. These imbalances could be transient, or permanent.

Have you tested all hormone levels possible?

I need to get testosterone and the whole works done still. My doctor is a pain in the ass and just cause Im 22, he doesnt want to test my hormones...

I truly think my problem is hormone related. I mean I found an article the other day that showed reduced FSH and LH being the cause of vocal weakness and loss of vocal stability. Like I cant talk over crowds anymore, cant even sing in my chest voice without it breaking. I had a vocal coach in high school that lost her voice for a while after pregnancy/postpartum due to the hormonal changes. Idk my story just seems very hormonal.

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MemberMember
60
(@fiksi)

Posted : 01/04/2018 3:25 pm

7 minutes ago, Gladiatoro said:
Its heartbreaking what these derms do to kids and young adults. For a few red spots.

Basically traumatizing them for life and messing up their young bodies.

I will say this- my case was quite tough, years of everything... strong back/scalp acne(interfered with daiyl life)... this is an extremely dangerous drug, which may only be considered in most extreme cases.

However, I will say we see here people with 3 pimples who get 80mg a day. Basically, near 2mg/kg dose for a young girl. Crazy. Majority of people never need to consider accutane.

I also think derms don't warn us properly of all consequences. I was so ill from accutane, man, I thought I might end. Also, FYI, I didn't have much side effects until almost 5th month... then this weakness began. I thought I had ALS or some terminal disease.

6 minutes ago, Colinboko said:
I need to get testosterone and the whole works done still. My doctor is a pain in the ass and just cause Im 22, he doesnt want to test my hormones...

I truly think my problem is hormone related. I mean I found an article the other day that showed reduced FSH and LH being the cause of vocal weakness and loss of vocal stability. Like I cant talk over crowds anymore, cant even sing in my chest voice without it breaking. I had a vocal coach in high school that lost her voice for a while after pregnancy/postpartum due to the hormonal changes. Idk my story just seems very hormonal.

Just pay yourself and do it. Yes... destruction of vocal cords is also an accutane possible effect. Hormonal panel should be done.

It's just, some docs may say you are crazy- they will give you valium and say to calm down. You are young, nothing is wrong. Yes.

I was on mino for quite some time, and while I had sides, nothing so serious, and also... it's like 20 side effects listed in total. tane is like 1000+. It is very systemic- affecting basically every organ and hormone.

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cnb30, Gladiatoro, cnb30 and 3 people reacted
MemberMember
0
(@abi72)

Posted : 01/04/2018 4:32 pm

Not saying lyme has any relevance, just looking further afield to try and understand other conditions and to see what success they might have had. Lyme sufferers also deal with sexual sides.
To understand Lyme doctors are being told to look at inflammation, infection and immune dysfunction.
Note most test come back clear.

I think we all know by now that we are looking at multi organ disorder just like autism brought on by vaccines.
gastrointestinal, neurological and immunological.

The doctor here talks about low white cell count, low platelets count and elevated liver functions with the classical symptoms as markers.
Anyone got any tests results to share.

We really need a wide spectrum of test done including skin biopsies - Uk guys really have no excuse to get all testing done.

We really should get a comprehensive list of tests so that doctors could be advise because as we all know they have no clue.

Is there anyone up for going to the GP and demanding complete testing?
If anyone wants some guidance on what test to ask for please state and we can put our heads together.

Lyme + low T

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MemberMember
60
(@fiksi)

Posted : 01/04/2018 6:29 pm

2 hours ago, hatetane said:

Not saying lyme has any relevance, just looking further afield to try and understand other conditions and to see what success they might have had. Lyme sufferers also deal with sexual sides.
To understand Lyme doctors are being told to look at inflammation, infection and immune dysfunction.
Note most test come back clear.

I think we all know by now that we are looking at multi organ disorder just like autism brought on by vaccines.
gastrointestinal, neurological and immunological.

The doctor here talks about low white cell count, low platelets count and elevated liver functions with the classical symptoms as markers.
Anyone got any tests results to share.

We really need a wide spectrum of test done including skin biopsies - Uk guys really have no excuse to get all testing done.

We really should get a comprehensive list of tests so that doctors could be advise because as we all know they have no clue.

Is there anyone up for going to the GP and demanding complete testing?
If anyone wants some guidance on what test to ask for please state and we can put our heads together.

Lyme + low T

I actually had Lyme man- I really had Lyme. I never knew I ever had a tick... developed malaise, fever, and a rash. Treated with tetras, never done any actual testing because case was clear.

However, Lyme often quiets down, and then becomes silent striking later things liek brain, heart, nerves, years later. It can be a chimera disease. Lyme does have an active spirochette at work.

Roaccutane damage, I think, is cumulative and then it alters body systems. Everyone gets damaged by tane, the question is how much, and when this will show(or if). Unfortunately, the death of glands like those lubing eyes can be permanent, as can night vision changes etc.

The damage from tane is from period of taking, and perhaps some time after. The problems appearign later are just the result of altered functioning taking its toll.

I think tane panel should include thyroid and ANA tests, and all hormones + CK. At minimum.

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MemberMember
75
(@colinboko)

Posted : 01/04/2018 6:50 pm

3 hours ago, fiksi said:
I will say this- my case was quite tough, years of everything... strong back/scalp acne(interfered with daiyl life)... this is an extremely dangerous drug, which may only be considered in most extreme cases.

However, I will say we see here people with 3 pimples who get 80mg a day. Basically, near 2mg/kg dose for a young girl. Crazy. Majority of people never need to consider accutane.

I also think derms don't warn us properly of all consequences. I was so ill from accutane, man, I thought I might end. Also, FYI, I didn't have much side effects until almost 5th month... then this weakness began. I thought I had ALS or some terminal disease.
Just pay yourself and do it. Yes... destruction of vocal cords is also an accutane possible effect. Hormonal panel should be done.

It's just, some docs may say you are crazy- they will give you valium and say to calm down. You are young, nothing is wrong. Yes.

I was on mino for quite some time, and while I had sides, nothing so serious, and also... it's like 20 side effects listed in total. tane is like 1000+. It is very systemic- affecting basically every organ and hormone.

I had them looked at. Its not destruction necessarily. The hormones just control the amount of muscle.

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MemberMember
60
(@fiksi)

Posted : 01/04/2018 7:00 pm

10 minutes ago, Colinboko said:
3 hours ago, fiksi said:

I had them looked at. Its not destruction necessarily. The hormones just control the amount of muscle.

Accutane is a known myotoxic drug, and it can destroy/damage muscles(sometimes with elevated CK). So cords can be affected in this way as well. Pure muscle destruction is possibly mostly reversible, but altered hormonal glands may not be.

There are known death cases from this. A young guy had tane cause extreme stress on muscles, and he hiked and exerted very high effort as well. He collapsed and died later. In absence of tane the stress on his muscles would not have caused this. Cause of death? We coudl say, accutane.

Your case may be different, but tane does affect muscles(and joints) directly.

However, now when you say this, I also noticed my voice became "hoarser", so to say, on tane.

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MemberMember
70
(@whackutane)

Posted : 01/04/2018 7:13 pm

feeling pretty backed up after allochol. I suppose I didnt quite reach the bile expulsion stage and Im waiting my liver is waiting stagnantly for it now, although I stopped taking the allochol over a week ago. Trying psyllium husk to get things moving. Will get the remainder allochol tablets I have and see what another week does. Also will try malic acid capsules I have to open things up.

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MemberMember
75
(@colinboko)

Posted : 01/04/2018 7:17 pm

17 minutes ago, fiksi said:
Accutane is a known myotoxic drug, and it can destroy/damage muscles(sometimes with elevated CK). So cords can be affected in this way as well. Pure muscle destruction is possibly mostly reversible, but altered hormonal glands may not be.

There are known death cases from this. A young guy had tane cause extreme stress on muscles, and he hiked and exerted very high effort as well. He collapsed and died later. In absence of tane the stress on his muscles would not have caused this. Cause of death? We coudl say, accutane.

Your case may be different, but tane does affect muscles(and joints) directly.

However, now when you say this, I also noticed my voice became "hoarser", so to say, on tane.

Mine isnt hoarse. Its weak.. has no strength. Im having problems with proper closure. Hoarse has to do with the actual mucosa of the cords being affected. My mucosa is fine (been examined by the best ENT in the country) its the muscle that is the problem.

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MemberMember
60
(@fiksi)

Posted : 01/04/2018 7:30 pm

3 minutes ago, Colinboko said:
20 minutes ago, fiksi said:
Accutane is a known myotoxic drug, and it can destroy/damage muscles(sometimes with elevated CK). So cords can be affected in this way as well. Pure muscle destruction is possibly mostly reversible, but altered hormonal glands may not be.

There are known death cases from this. A young guy had tane cause extreme stress on muscles, and he hiked and exerted very high effort as well. He collapsed and died later. In absence of tane the stress on his muscles would not have caused this. Cause of death? We coudl say, accutane.

Your case may be different, but tane does affect muscles(and joints) directly.

However, now when you say this, I also noticed my voice became "hoarser", so to say, on tane.

Mine isnt hoarse. Its weak.. has no strength. Hoarse has to do with the actual mucosa of the cords being affected. My mucosa is fine (been examined by the best ENT in the country) its the muscle that is the problem.

I understand. How are your other muscles though?

The effects of tane are multifold, and through many channels. We may each have a different set of effects, where some overlap. In your case, it could be hormonal. even the dose effect on each person differs(even people of same sex/weight/age etc).

My biggest fear is that some are now known to be possibly irreversible.

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MemberMember
223
(@gladiatoro)

Posted : 01/04/2018 7:36 pm

The drug leaves the system in a couple of months derms say of course it does LIARS. I say do NOT insult my intelligence.

We all know it permanently alters the human body . No question.

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MemberMember
1803
(@guitarman01)

Posted : 01/04/2018 7:42 pm

On 1/5/2018 at 8:00 AM, fiksi said:

However, now when you say this, I also noticed my voice became "hoarser", so to say, on tane.

weaker. not as sharp. like when trying to read a book aloud at a fast articulate pace.

On 1/5/2018 at 8:30 AM, fiksi said:

I understand. How are your other muscles though?

yes this could easily be systemic and people might not even be aware.A weak muscle in your neck or jaw for example could trigger headaches.
I'm looking at muscles possibly affecting blood flow as well. Maybe problems with the sinuses and ear fullness are muscle related. I remember someone coming on here saying they were diagnosed with "collapse of the sinus structure"
Muscle drives bone strength as well.

Heres muscles you dont think about

Sternocleidomastoid Muscles

[Edited image out]

SCM muscle pain can affect many areas in the head, face, and neck. Along with pain and stiffness, dizziness can be a symptom of SCM dysfunction.

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MemberMember
223
(@gladiatoro)

Posted : 01/04/2018 7:55 pm

Someone explain to why beer and isotretinoin dont mix ??? What is the mechanism behind that.

My theory is it dehydrates a person even more but why the joint pain ?

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MemberMember
75
(@colinboko)

Posted : 01/04/2018 8:07 pm

On 1/5/2018 at 8:42 AM, guitarman01 said:

weaker. not as sharp. like when trying to read a book aloud at a fast articulate pace. yes this could easily be systemic and people might not even be aware.A weak muscle in your neck or jaw for example could trigger headaches.
I'm looking at muscles possibly affecting blood flow as well. Maybe problems with the sinuses and ear fullness are muscle related. I remember someone coming on here saying they were diagnosed with "collapse of the sinus structure"
Muscle drives bone strength as well.

Heres muscles you dont think about

Sternocleidomastoid Muscles

[Edited image out]

SCM muscle pain can affect many areas in the head, face, and neck. Along with pain and stiffness, dizziness can be a symptom of SCM dysfunction.

My cord closure is the issue. The muscle isnt strong enough to keep the mucosa vibrating, therefore my voice breaks/gives out like Im going through puberty again. Rather embarrassing

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MemberMember
1753
(@truejustice)

Posted : 01/04/2018 8:21 pm

Weak muscles are for me systemic, not just head area but the whole body.

This makes for hard going as you enter your 40s, things like yoga and playing the drums are hard going as the body feels like its full of inflammation, stiff, weak and unresponsive.

Is this all just fibromyalgia?? Or is theresomething else at play?

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MemberMember
23
(@perene)

Posted : 01/04/2018 8:26 pm

On 03/01/2018 at 2:36 AM, ailaeshiz said:
On 03/01/2018 at 1:18 AM, Gladiatoro said:

For people who have sexual disfunction after istotretinoin exposure , here is a re-cap .
https://rxisk.org/accutane-30-years-of-trading-our-sex-lives-for-clear-skin/

The worst part of all this is no matter how many people come forward with their symptoms the medical community still refuses to acknowledge it as a problem.

What is more odd about this is that one year after treatment my libido increased more than ever before + I had depression to a point I was acting like I never did and even cried for days. And this from a guy who was always stoic and not interested in relationships. The thing was so annoying that I had an erection in public while directly looking at a girl, it was embarrassing in a level that even a blind person would have noticed that day.

This was June 9, 2012, and the treatment took most of 2011. Then from 2012 onwards my libido decreased 90% from what it was (to a point I don't even care about sex/fap/women) and the depression is totally gone. I always thought this was psychological, and the fact I had this massive change in 2012 completely disguised what was happening at the time.

The only place where I found some explanation about what happened with me was in the Dr. Pezzi book, but I still have not grasped fully what he tried to explain. Here's a quote:

Sensory Fidelity

This is a new concept, so I will carefully explain it. Most people are familiar with fidelity as it applies to sound systems. In this context, fidelity refers to the degree to which the system accurately reproduces the input signal. If you are an engineer, or just a music buff, you likely know about Total Harmonic Distortion (THD), which is one way of quantifying how the system distorts the signal.

In addition, there are various types of sensory fidelity. You™ve probably heard that Viagra can cause blue-tinged vision as a side effect. Thus, Viagra can distort vision, or alter visual fidelity. Various drugs can affect taste and smell, altering gustatory fidelity and olfactory fidelity, respectively. Some drugs and a number of diseases alter auditory fidelity by distorting the perception of sound. The type of sensory fidelity that is most important in sexuality is tactile (touch) fidelity. This applies to both genital and nongenital sensation, but this discussion will center on genital sensation.

Before we resume discussing sensory fidelity, I will present a stereo analogy to make the subsequent material easier to understand. Stereo systems have two basic controls: a volume control to regulate the sound amplitude, and a tone control (which may be replaced by a graphic equalizer that allows you to fine-tune the tone by adjusting the bass, treble, and midrange sounds). 

Thus, to optimize your listening pleasure, you can adjust volume and tone. In regard to optimizing their sexual pleasure, most people assume that they just need to turn up the volume, so to speak (to use the stereo analogy). While it is true that many people have diminished sexual sensation and could benefit from more of it, cranking up the volume is not the only way to enhance pleasure. Sometimes, tweaking the tone (to resurrect the stereo analogy once more) is the best way to intensify pleasure. To understand this, consider how Accutane affects sensation.

While its long-term effect can be to reduce sexual sensation (analogous to having the stereo volume control freeze at a low setting), Accutane can significantly increase the intensity of sexual sensation in the short run. Unfortunately, this increase in sensation is not pleasurable; it can feel like your œfunny bone (ulnar nerve at the elbow) was hit with a hammer.

Therefore, intense sensation is not always pleasurable sensation. Genital tactile fidelity is rarely that off, or out of tune, but milder disturbances in fidelity are common so that sex just doesn™t feel as good as it should. When fidelity is optimized, pleasure is heightened. If people were to think of this in terms of stereo controls, they would likely assume that the volume control was turned up, when in fact the tone control was adjusted.

If you wish to maximize sexual pleasure by adjusting fidelity (œtone), knowing what to do is not a simple process, for reasons that will soon become clear. To use the stereo analogy, do you turn the tone control toward more bass, or more treble? Not an easy decision, is it? (It may be for music, but not for sensation.) Here is the reason for this difficulty. Perception of sensation is extremely complex. Nerve receptors feed information to nerves, which transmit information to the brain via the spinal cord. Various brain cells work in concert to interpret the incoming signals, and produce a sensation. The sensation is purely a creation of the brain. If you analyzed the neural signals, the voltage spikes would look something like this (and the book goes on...)

In the short run?

What?

And about the red/sore penis I reported, I believe mine (since this treatment) became a lot more sensitive to common soaps, I am not even fapping for days and it's red all of sudden, in the glans. I read that I need a more expensive (and liquid) soap that has a pH of 4-5. Will try that now to see if things improve. Always thought it was some kind of STD or lack of hygiene, yet this is not my case AT ALL. It must be another side effect (dry skin?) from using this poison (and this one also appears to be permanent). I never had to concern myself with soap. :smileys_n_people_95:

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MemberMember
1803
(@guitarman01)

Posted : 01/04/2018 8:33 pm

9 minutes ago, Perene said:

What?

And about thered/sore penis I reported, I believe mine (since this treatment) became a lot more sensitive to common soaps, I am not even fapping for days and it's red all of sudden, in the glans.I read that I need a more expensive (and liquid) soap that has a pH of 4-5. Will try that now to see if things improve.Always thought it was some kind of STD or lack of hygiene, yet this is not my case AT ALL. It must beanother side effect from using this poison (and this one also appears to be permanent).I never had to concern myself with soap

When you think of skin thinning effects of accutane, this could be systemic as well, and not just on the outside but also internally. Example, erosion of the lining of the stomach. Someone that goes on oral steroids, It can thin the skin.It could also worsen the symptoms of hemorrhoids because of its skin thinning ability. Same could maybe apply to the throat, esophagus, they become more susceptible or sensitive.

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MemberMember
1753
(@truejustice)

Posted : 01/05/2018 1:33 am

4 hours ago, guitarman01 said:
When you think of skin thinning effects of accutane, this could be systemic as well, and not just on the outside but also internally. Example, erosion of the lining of the stomach. Someone that goes on oral steroids, It can thin the skin.It could also worsen the symptoms of hemorrhoids because of its skin thinning ability. Same could maybe apply to the throat, esophagus, they become more susceptible or sensitive.

I'd agree, it is Retinoic Acid we took after all, "Acid" being the operative word - the oxidative stress brought on is chronic system wide!!

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MemberMember
75
(@colinboko)

Posted : 01/05/2018 2:20 am

46 minutes ago, TrueJustice said:
I'd agree, it is Retinoic Acid we took after all, "Acid" being the operative word - the oxidative stress brought on is chronic system wide!!

Our body makes retinoic acid though.. maybe not in such extreme amounts but Im not really sure what youre getting at

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19
(@justdry)

Posted : 01/05/2018 3:47 am

1 hour ago, Colinboko said:
2 hours ago, TrueJustice said:
I'd agree, it is Retinoic Acid we took after all, "Acid" being the operative word - the oxidative stress brought on is chronic system wide!!

Our body makes retinoic acid though.. maybe not in such extreme amounts but Im not really sure what youre getting at

Well said - Gotta be honest, I kind of face-palmed at most of the posts on this page (585).

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MemberMember
1
(@08kx250f)

Posted : 01/05/2018 3:52 am

I've been suffering with dry skin, dry eyes, and red eyes (worst part) for about 10 years since my last pill. My eyes are always red and I can't figure out why. It's left me severely depressed as I can't even look at people anymore. All I want to do is lock myself in my room and just hide.

I do not have any other side effects other than what's listed above. I do live a healthy lifestyle, eat healthy, work out regularly. I just started taking Hyaluronic acid and biotin. I've taken omega 3 fish oils on and off for years and doubt they've done anything. I've tried restasis for a year and it didn't do anything. I clean my eyelids regularly (was diagnosed with blepharitis.)

I feel as if my life is over. Can anyone help?

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MemberMember
19
(@justdry)

Posted : 01/05/2018 4:09 am

Thought i'd give an update since I've now been back on Vitamin A for a few weeks.

Skin turnover seems vastly improved, wound healing is so much better than it was before, for the first time in years every little cut i get isn't turning into a scar. My face is now the best it's been in a long time, the redness from previous damage is still there but its nowhere near as bad as it's been, i feel a lot more confident now.

Further to this, I feel like i want to bang all the time lately, having not had much sex drive for around a year (i didn't have ED, just very low sex drive).

The only things i'm doing is VItamin C in a morning and 1 softgel of Cod Liver oil in the evening with Greek Yoghurt.

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MemberMember
1753
(@truejustice)

Posted : 01/05/2018 4:12 am

1 hour ago, Colinboko said:
2 hours ago, TrueJustice said:
I'd agree, it is Retinoic Acid we took after all, "Acid" being the operative word - the oxidative stress brought on is chronic system wide!!

Our body makes retinoic acid though.. maybe not in such extreme amounts but Im not really sure what youre getting at

Thats true but in large amounts it must be detrimental....

I was responding to the thinning of gut lining, weve also talked about lack of collagen, thin skin, thinning hair etc.

Im no doctor but its the Retinoic Acid yeah thats causing these things?

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MemberMember
1
(@08kx250f)

Posted : 01/05/2018 4:13 am

3 minutes ago, Justdry said:

Thought i'd give an update since I've now been back on Vitamin A for a few weeks.

Skin turnover seems vastly improved, wound healing is so much better than it was before, for the first time in years every little cut i get isn't turning into a scar. My face is now the best it's been in a long time, the redness from previous damage is still there but its nowhere near as bad as it's been, i feel a lot more confident now.

Further to this, I feel like i want to bang all the time lately, having not had much sex drive for around a year (i didn't have ED, just very low sex drive).

The only things i'm doing is VItamin C in a morning and 1 softgel of Cod Liver oil in the evening with Greek Yoghurt.

Did you ever have dry eyes?

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MemberMember
60
(@fiksi)

Posted : 01/05/2018 6:10 am

On 1/5/2018 at 3:20 PM, Colinboko said:
On 1/5/2018 at 2:33 PM, TrueJustice said:
I'd agree, it is Retinoic Acid we took after all, "Acid" being the operative word - the oxidative stress brought on is chronic system wide!!

Our body makes retinoic acid though.. maybe not in such extreme amounts but Im not really sure what youre getting at

There are many retinoids, and the one in is not exactly the same. Btw, do you know 0.00000001% or whatever cyanide in body is ok, but a 1g powder will kill you? This does not make tane safe at all.

On 1/5/2018 at 8:42 AM, guitarman01 said:

weaker. not as sharp. like when trying to read a book aloud at a fast articulate pace. yes this could easily be systemic and people might not even be aware.A weak muscle in your neck or jaw for example could trigger headaches.
I'm looking at muscles possibly affecting blood flow as well. Maybe problems with the sinuses and ear fullness are muscle related. I remember someone coming on here saying they were diagnosed with "collapse of the sinus structure"
Muscle drives bone strength as well.

Heres muscles you dont think about

Sternocleidomastoid Muscles

[Edited image out]

SCM muscle pain can affect many areas in the head, face, and neck. Along with pain and stiffness, dizziness can be a symptom of SCM dysfunction.

My extreme muscle weakness was together with swallowing problems, headache, ataxia and such. This may be related.

I actually thought I got ALS or something very nasty.

On 1/5/2018 at 4:52 PM, 08kx250f said:

I've been suffering with dry skin, dry eyes, and red eyes (worst part) for about 10 years since my last pill. My eyes are always red and I can't figure out why. It's left me severely depressed as I can't even look at people anymore. All I want to do is lock myself in my room and just hide.

I do not have any other side effects other than what's listed above. I do live a healthy lifestyle, eat healthy, work out regularly. I just started taking Hyaluronic acid and biotin. I've taken omega 3 fish oils on and off for years and doubt they've done anything. I've tried restasis for a year and it didn't do anything. I clean my eyelids regularly (was diagnosed with blepharitis.)

I feel as if my life is over. Can anyone help?

Unfortunately, dry eyes could be permanent. Tane can completely or mostly destroy this gland, and there is no going back. Eye drops can help. Night vision changes can also be irreversible.

BTW, this effect is recognised to be permanent. It really sucks, yes.

If it hasn't gone by now, likely it won't. It sucks... I know. It ha snothign with your healthy life, it's accutane that damaged your body.

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MemberMember
60
(@fiksi)

Posted : 01/05/2018 6:34 am

2 hours ago, TrueJustice said:
Thats true but in large amounts it must be detrimental....

I was responding to the thinning of gut lining, weve also talked about lack of collagen, thin skin, thinning hair etc.

Im no doctor but its the Retinoic Acid yeah thats causing these things?

Isotretinoin is not retinoic acid- it is only similar in molecular structure. RA is a natural vit A derivative.

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