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Repairing the long-term damage from Accutane

 
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(@marshl1)

Posted : 06/30/2018 7:22 am

32 minutes ago, Benjamin94 said:
Yes to the first point. No to the second point.

As I repeatedly keep saying - you can test for Vit A toxicity. You can have your blood Vitamin A level measured. If youre in the UK, you can check out Medichecks. If you're in another country - Im sure the equivalent exists.

I agree with you True Justice - It hits you whilst you take it and causes permenant changes. At the very least: reduced sebaceous output. If it was truly causing long term Vitamin A toxicity - then the teratogenic effect would be long term. But it is safe for women to get pregnant after 1 month of being off it.

As for Genome damage - what do you mean by this - mutations in the DNA? If so I strongly doubt it.

It obviously causes epigenetic changes. From what is known of the mechanism - it binds to the RXR nuclear receptor. So it changes gene expression, but actually changing the genes themselves - I doubt it.

Accutane is mostly taken in massive doses for a period of at least 6 months. It's not the blood where you need to be looking it's the lipids. The way accutane works isby toxifying the lipids to such an extent that the retinoic acid then poisons the bacteria living in those lipids. So, since this accumulation process has repeated millions of times over, clearly accutane persists in the lipids for at least 6 months, or more. Thus, the 30 hour half life is nonsense. Perhaps if we were only talking about the blood this may be true. The retinoic acid is not just poisoning the bacteria living on the skin, it is also poisoning the stem cells.
Since we know accutane accumulates in the skin lipids for long periods of time why wouldn't it accumulate in lipids occuring elsewhere in the body?
I don't think many people agree with this sentiment here but I am a great believer in the bodies natural ability to heal itself if you give it the chance. The question is what's stopping us healing post accutane? I don't think you will find the answer to this question in the researchthat's out there at the moment but you keep referringto it.
I know what makes sense to me and I know what seems to be working for me. A Vitamin A blood level test is not what I need but thanks for the suggestion.

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(@mikez)

Posted : 06/30/2018 10:07 am

7 hours ago, marshl1 said:
@Akos. Don't take fish oil it's extremely high in vitamin A.
Lee

Cod liver oil is high in vitamin A, but regular fish oil from memory, should be very low.

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10
(@marshl1)

Posted : 06/30/2018 11:47 am

1 hour ago, mikez said:
Cod liver oil is high in vitamin A, but regular fish oil from memory, should be very low.

I've only really looked at the premium brands and I was taking Nordic oil which is very high quality. If you could refer me to a brand that is very low vitamin A that would be great. A lot of the Scandinavian brands are aware of the dangers of supplementing high levels of vitmain A. They experience high incidence of Osteoporosis in Sweden in particular and it's thought to be due to the high levels of Vitmain A in the diets. These brands sometimes advertise as low Vitamin A but they aren't low enough for me to consider taking.

Thanks

27 minutes ago, Devolution said:

I was doing some googling as I do and found that Post finasteroid sufferers have been posting before and after images, some of them are truly scary and I won't post the faces as i don't have permission but I will link the page i looked at and you can look yourself. It looks worse than what meth does to some people and causes fat loss and wastage of the body. I say this because what I have been experiencing is kind of wasting of the skin, flexibility, loss of collagen almost, and I genuinely think its now down to epigenetic changes as people stated before, up or down regulated genes and not mutations.

The good news here is that a few actually went back to normal, they have visual proof and one or two look so much better, its just finding how to get the body's balance back and as Flynn's research show's, CRISPR & CAS 9 could be a potential solution if correct, for some this may fix themselves, but for others they may need some help. Just sounds the most likely cause out of everything now to me anyhow, gene mutations would take a neurotoxin, which accutane is not, even as much as people think it is. Just found this link interesting in all honesty, really does take courage to show your face in all this crap.

https://forum.propeciahelp.com/t/photographic-evidence-of-facial-changes-post-your-changes/7429

https://www.ncbi.nlm.nih.gov/pubmed/26247148

Vitamin A and Retinoids have neurotoxic effects in high doses. This is literally the first link that I found, im sure there's plenty more on this

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(@benjamin94)

Posted : 06/30/2018 12:16 pm

@DevolutionDid you take Finasteride?

CRISPR-Cas9 was only discovered in 2013 and i doubt it will have clinical applications for many years yet. It also is a way of altering genetics not epigenetics. The big hope is that we might be able to use it to cure HIV.

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(@mikez)

Posted : 06/30/2018 1:01 pm

8 hours ago, marshl1 said:
I've only really looked at the premium brands and I was taking Nordic oil which is very high quality. If you could refer me to a brand that is very low vitamin A that would be great. A lot of the Scandinavian brands are aware of the dangers of supplementing high levels of vitmain A. They experience high incidence of Osteoporosis in Sweden in particular and it's thought to be due to the high levels of Vitmain A in the diets. These brands sometimes advertise as low Vitamin A but they aren't low enough for me to consider taking.

Thanks
https://www.ncbi.nlm.nih.gov/pubmed/26247148

Vitamin A and Retinoids have neurotoxic effects in high doses. This is literally the first link that I found, im sure there's plenty more on this

Interesting. Personally, I've never seen a product I used list vitamin A. I also buy the higher quality brands for peace of mind. The source of oil I think is the important aspect here. If sourced from liver, it will be high in vit A naturally.

It could be that Scandinavian brands labeling 'low Vit' is to appease to a vit A conscious market, but doesn't automatically mean other fish oils (non liver sourced) are higher in vit A. Rather, other brands may just chose not to market that aspect.

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(@benjamin94)

Posted : 06/30/2018 1:08 pm

Yes reading that page, I think he knows more biochemistry than me.

But Ive been thinking about this 5-AR theory. It should be testable. If 5-AR has been downregulated as they are suggesting, it should lead to decreased DHT synthesis. You can measure DHT level in the blood reasonably easily.

In fact, im atm looking at Dubyas results on the PAS forum and theyre normal.

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(@jason3)

Posted : 06/30/2018 2:02 pm

As I said before, isotretinoin doing damage to some while they are taking it is the only plausible explanation in my mind. Hypervitaminosis A stops after you stop taking the retinoid. It doesnt stay with you forever, stored in your fat or whatever else. I just had a Retinol test last week for fun as part of my annual nutrition testing and I was middle of the range normal.

Retinoids bind to RXR and can switch things on and off potentially affecting the genome which in turn can makethese side effects permanent. That is what stays with you for the rest of your life, not the drug or some bacteria.

New ideas like CRISPR hold promise but are not there yet. It would be extremely unwise at this point to try it. No one fully understands the long-term effects or dangers. Example: It was recently used to cure HIV. Only it didnt work. Instead, the virus mutated DNA further to repair what the CRISPR treatment changed and it became even more resistant to known and possibly future treatments. Not exactly what they were going for.

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(@brendan452)

Posted : 06/30/2018 2:14 pm

I think those photos are bollox why would they take finesteride when they all have a full head of hair in the before photos

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359
(@dubya_b)

Posted : 06/30/2018 3:10 pm

12 hours ago, Benjamin94 said:
But you did have severe acne, so your health wasnt perfect before taking this drug. I say this to you just to prove the point that your body isnt infallible - it can break without accutane.

My source for recognized side effects is the BNF. If you google BNF, open the first link and then you can search for whichever drug you want to look up.

Ive never and will never say that your symptoms are not real.

To those saying that I dont know what Im doing taking this. I have acne all over my chest, back, shoulders and forearms. I watched it spread for years and didnt ask to take this drug, because I knew what this drug was. Only when Iit spread onto my forearms did I finally give up.

Its brothers Tretinoin and Bexarotene are used to treat APML and Cutaneous Lymphoma respectively. Believe me I do not underestimate Isotretinoin as a drug.

I didn't have severe acne. It could be considered moderate at worst, yet was prescribed Accutane. And I felt great with acne before Accutane. If some spots constituted ill health, then 1/5 teenagers are sick.

We are in strong disagreement on many points, but still, thanks for the info on the BNF. Will check that out next time I am home.

Please tread carefully during your treatment.

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1804
(@truejustice)

Posted : 06/30/2018 3:16 pm

3 hours ago, marshl1 said:
I've only really looked at the premium brands and I was taking Nordic oil which is very high quality. If you could refer me to a brand that is very low vitamin A that would be great. A lot of the Scandinavian brands are aware of the dangers of supplementing high levels of vitmain A. They experience high incidence of Osteoporosis in Sweden in particular and it's thought to be due to the high levels of Vitmain A in the diets. These brands sometimes advertise as low Vitamin A but they aren't low enough for me to consider taking.

Thanks
https://www.ncbi.nlm.nih.gov/pubmed/26247148

Vitamin A and Retinoids have neurotoxic effects in high doses. This is literally the first link that I found, im sure there's plenty more on this

Ok, so youre coming from the angle that if you cut out all Vit A, this will give your body the best chance of healing, is this correct?

youd surely need to chuck in a few supplements too yeah to repair the cells like Vit B3 or something yeah?

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(@marshl1)

Posted : 06/30/2018 4:19 pm

1 hour ago, TrueJustice said:
Ok, so youre coming from the angle that if you cut out all Vit A, this will give your body the best chance of healing, is this correct?

youd surely need to chuck in a few supplements too yeah to repair the cells like Vit B3 or something yeah?

Yes pretty much. I actually still take quite a few supplements, im just in the habit after so many years of experimenting. I take NAC in the morning, TUDCA, activated charcoal and vitamin C but you don't necessarily need these things

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(@truejustice)

Posted : 06/30/2018 5:52 pm

Yep Im back on the Tudca too.

also, Vit C, Calcium d Glucarate and MSM

No change at all just yet, albeit its only been a week of going back on these.

Keep in mind Im 20 years post tane - if after say 6 weeks of taking these supplements nothing changes- Ill conclude theres absolutely nothing to detox, the cells or something have been damaged or altered somehow......end of story.

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(@jason3)

Posted : 06/30/2018 7:55 pm

1 hour ago, Devolution said:
5 hours ago, Jason3 said:

As I said before, isotretinoin doing damage to some while they are taking it is the only plausible explanation in my mind. Hypervitaminosis A stops after you stop taking the retinoid. It doesnt stay with you forever, stored in your fat or whatever else. I just had a Retinol test last week for fun as part of my annual nutrition testing and I was middle of the range normal.

Retinoids bind to RXR and can switch things on and off potentially affecting the genome which in turn can makethese side effects permanent. That is what stays with you for the rest of your life, not the drug or some bacteria.

New ideas like CRISPR hold promise but are not there yet. It would be extremely unwise at this point to try it. No one fully understands the long-term effects or dangers. Example: It was recently used to cure HIV. Only it didnt work. Instead, the virus mutated DNA further to repair what the CRISPR treatment changed and it became even more resistant to known and possibly future treatments. Not exactly what they were going for.

You seem to be having some good success so "permenant" may be more long term for a lot of people rather than anything else. As for genome changes can you back it up or is it a theory? I'm just curious is all, I certainly hope it doesn't change it permeantly if it's the case.

It is still "permanent" with me, I've just found a way to treat my symptoms and mitigate it. If I were to stop the hormones and supplements then I would be right back to where I was.

I cannot back up the fact that this is caused by isotretinoin - no one can do that. There is zero research and there probably never will be because this is an old drug (and a generic now) and no one is going to spend tens of millions to look into "new" side effects.

But another poster recently mentioned RAR and RXR, I can back up that retinoids do in fact affect gene expression. That topic is well-studied and proven. The more you read about retinoids, the more you will come to appreciate just how extremely powerful they are.
https://www.ncbi.nlm.nih.gov/pubmed/2826265
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3315372/
https://www.sigmaaldrich.com/technical-documents/articles/biofiles/retinoic-acid-and.html

Just Google "retinoids affect genome". So think about it - you ingest a massive amount of retinoic acid - capable of changing the way that many things work - and of course you are going to get some people with strange (bad) side effects.

Now, this analogy isn't quite right, but it's easy to understand. Who knows what iisotretinoin does - we may never know (because again there is no money in finding out). Picture all of these molecular "switches" flipping back and forth like some kind of slot machine spinning while you are taking Accutane - and you (and I) didn't land on lucky 777 when it stopped.

So this does beg the question - could you take it again the hope that you end up with a more favorable result next time, or would it be even worse? I don't think I would take that chance to be honest.

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(@truejustice)

Posted : 06/30/2018 8:11 pm

Ive done a lot over the years - shit loads of time/money and effort.

I studied yoga full on for 10 years and applied myself but continued to get worse with sore joints etc so Ive minimised yoga these days - mainly just do restorative postures to ease back and help relax. Im grateful for what I learnt in yoga.

As much as I suffer fatigue I do about 4 X 40 minute exercise bike activity and Im back into jogging lightly and do light weights. Regardless of issues Ill always recommend exercise as it improves sleep and helps with depression- for me anyway

I dont smoke, do very little alcohol.
Diet isnt perfect and I do watch what I eat more so these days. Havent done any extensive water fasting, maybe a few days of fasting as part of liver detox but not over a week.

Ive done the Moritz liver/gallbladder cleanse by the book about 5 times. Got results and then started to see none of the stones on the last 2 so figured my liver was clean.

Ive done kinesiology plenty of times which has provided relief for my brain fog issues but nothing has brought back my health - its all a bandaid up till now I hate to say. Having said that Im going back for some more this week after having not done it for 3-4 years. My brain fog and irritability are just too acute at the moment to do nothing.

Ive given the body every chance possible including letting time heal it but its not happening Im afraid to say. You just learn to cope.

oh yeah - Ive also seen world leading gastroenterologist that didnt find anything nasty going on in gut or bowel. Although he did find herniated esophagus for which I take patriot to control stomach acid - it works and Ill probably be on it for life.

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(@guitarman01)

Posted : 06/30/2018 10:09 pm

Anyone had this fully investigated?
The last one, tear film debris could go hand in hand with dry eyes. I'm also looking at microbial changes on the conjunctiva or mucus membrane that cover the eyes.

Floaters

  • Ophthalmic
    • Vitreous syneresis
    • Vitreous haemorrhage
    • Posterior vitreous detachment
    • Retinal detachment
    • Vitritis
    • Tear film debris
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(@truejustice)

Posted : 07/01/2018 3:21 am

Acid reflux product is Pariot not Patriot : )

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(@benjamin94)

Posted : 07/01/2018 4:45 am

@DevolutionHere is a link to chemo regimen for APML which includes Tretinoin (ATRA). In Britain, isotretinoin is not used in chemo - so I took Tretinoin as the closest comparison.

[Edited image out]

It is dosed per Body surface area rather than weight. BSA is calculated from weight and height. You can find charts to make the conversion on google. If you google BSA Chart - you get up a good one. Im 6ft 2 and weight 70kg, so my BSA is around 2m^2. So my daily dose of Tretinoin would be 90mg. So the doses arnt that much bigger than those used of Isotretinoin. Obviously it is a different drug, so theyre not directly comparable. But it gives you some idea.

What i will also say is that Tretinoin is not a classic chemotherapy drug. If you look at the other drugs: Idarubicin and Mitoxantrone - those are true chemo drugs, i.e. phenomenally cytotoxic poisons which kill cells that try to divide. The retinoids are cleverer - they alter gene expression and can induce apoptosis in certain cancers. Corticosteroids are often included in chemo regimens (For instance R-CHOP, VTD, etc) for the same reason - they also alter gene expression and induce apoptosis in certaincancers. Proper chemotherapy agents (mitoxantrone, idarubicin) can simply kill any cell that tries to divide.

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(@marshl1)

Posted : 07/01/2018 9:50 am

11 hours ago, guitarman01 said:

Anyone had this fully investigated?
The last one, tear film debris could go hand in hand with dry eyes. I'm also looking at microbial changes on the conjunctiva or mucus membrane that cover the eyes.

Floaters

  • Ophthalmic
    • Vitreous syneresis
    • Vitreous haemorrhage
    • Posterior vitreous detachment
    • Retinal detachment
    • Vitritis
    • Tear film debris

Are you saying that you have these eye conditions post accutane?
Accutane and/or high dose vitamin A/retinoids is very bad for the eyes in my opinion.
I have had severe dry eyes post accutane and also still have loads of vitreous floaters. Vitreous floaters are often caused by posterior vitreous detachment which is a natural deterioration in the ageing process. Perhaps Accutane speeds this process up. Both of the aforementioned conditions are benign but can be extremely bothersome.
Retinal detachment is entirely more serious and requires emergency attention. There is a genuine risk of blindness if retinal detachment is not treated surgically

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1803
(@guitarman01)

Posted : 07/01/2018 10:37 am

48 minutes ago, marshl1 said:

Are you saying that you have these eye conditions post accutane?

I have eye floaters,dry eyes, eye inflammation and light sensitivity.
Im saying has anyone had their eye floaters formally diagnosed asvitreous floaters?
This would probably involve dye colored eye drops to dilatethe pupils then examine.

Do your floaters respond to blinking?

Finally, whereas most floaters are found in the vitreous fluid, it is important not to overlook another, simpler cause of the problem. You could be suffering from debris in the tear film. Many people, especially those prone to allergies, blepharitis (eyelid inflammation) or styes can accumulate makeup, mucus and other material within their tears. Floaters due to tear-film debris move when you blink, whereas vitreous floaters respond more to eye movements than to blinking.

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(@marshl1)

Posted : 07/01/2018 11:00 am

20 minutes ago, guitarman01 said:
I have eye floaters,dry eyes, eye inflammation and light sensitivity.
Im saying has anyone had their eye floaters formally diagnosed asvitreous floaters?
This would probably involve dye colored eye drops to dilatethe pupils then examine.

Do your floaters respond to blinking?

Finally, whereas most floaters are found in the vitreous fluid, it is important not to overlook another, simpler cause of the problem. You could be suffering from debris in the tear film. Many people, especially those prone to allergies, blepharitis (eyelid inflammation) or styes can accumulate makeup, mucus and other material within their tears. Floaters due to tear-film debris move when you blink, whereas vitreous floaters respond more to eye movements than to blinking.

20 minutes ago, guitarman01 said:
I have eye floaters,dry eyes, eye inflammation and light sensitivity.
Im saying has anyone had their eye floaters formally diagnosed asvitreous floaters?
This would probably involve dye colored eye drops to dilatethe pupils then examine.

Do your floaters respond to blinking?

Finally, whereas most floaters are found in the vitreous fluid, it is important not to overlook another, simpler cause of the problem. You could be suffering from debris in the tear film. Many people, especially those prone to allergies, blepharitis (eyelid inflammation) or styes can accumulate makeup, mucus and other material within their tears. Floaters due to tear-film debris move when you blink, whereas vitreous floaters respond more to eye movements than to blinking.

Oh yeah for sure, several times. As well as taking accutanne i've had LASIK. I was followed up intensively after surgery because of these floaters. I have also had several second opinions. I was told by every eye doctor, including the impartial ones that I had vitreous floaters but they could not be caused by LASIK because this procedure is performed on the outer surface of the eye and couldn't affect the vitreous humor

Just now, marshl1 said:
Oh yeah for sure, several times. As well as taking accutanne i've had LASIK. I was followed up intensively after surgery because of these floaters. I have also had several second opinions. I was told by every eye doctor, including the impartial ones that I had vitreous floaters but they could not be caused by LASIK because this procedure is performed on the outer surface of the eye and couldn't affect the vitreous humor

I've also experienced pretty severe photophobia for years but it's improving now. Oh and night blindness.

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(@marshl1)

Posted : 07/01/2018 12:37 pm

1 hour ago, Devolution said:
Your photophobias improving thats very interesting to say the least, Im more interested in getting my cones and rods tested as accutane has been show to reduce light bleeching of the photoreceptors, so how quickly they adapt to light etc, I do have some slack I can use with optamologist because at least I can show them my floaters, which happened overnight and I believe mine where caused by accutane messing with my collagen. Its good photophobia is improving for you, has the night vision issues remained a constant?

Ive been looking more at the propeciahelp forum and its scary how identical my accutane issues are with theirs, I can find more people who used finasteroid than accutane with my issues so I definitely think a cure for finasteroid or at least treatment will fix most of us over on the accutane side of things if its truly a 5ar issue. Skin strechiness I also found to be caused by finasteroid, exactly like theway my skin has gone so defiantly similaritys which I find exciting. A person also said he saw his night vision and visual snow go back to normal while water fasting but once he ate again it reverted so Im eager to try this myself as it would indicate a reversible change.

Oh man I wrote you a really long reply but must of forgotten to submit it sorry

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(@guitarman01)

Posted : 07/01/2018 12:41 pm

1 hour ago, marshl1 said:

I have also had several second opinions. I was told by every eye doctor, including the impartial ones that I had vitreous floaters

so was this a conclusion based on a certain test?
Or based on described symptoms?
Could they literally see the floaters after dilating your eyes?

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(@marshl1)

Posted : 07/01/2018 1:29 pm

45 minutes ago, guitarman01 said:
so was this a conclusion based on a certain test?
Or based on described symptoms?
Could they literally see the floaters after dilating your eyes?

Yes they could see the floaters after dilating my pupils and performing a simple slit lamp test. They were floating around inside the vitreous

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359
(@dubya_b)

Posted : 07/01/2018 8:41 pm

On 6/29/2018 at 5:15 PM, hatetane said:
https://www.quora.com/Should-I-take-Accutane-Is-it-safe
what the professional are saying is so uneducated.
Kudos to Mark Dunn though! https://www.quora.com/Should-I-take-Accutane-Is-it-safe
what the professional are saying is so uneducated.
Kudos to Mark Dunn though!

Actually, Mr. Croft's answer is on the more precautions side of what the professionals say online and falls in line with the misinformed general consensus on Accutane among the medical community. He at least mentioned possible liver problems, "severe" dryness, including "down there" [vaginal?] dryness, and ended by saying acne will probably clear for most if left untreated. Most of what I have read regarding "ask-a-doctor" Q/A is dermatologists advising that Accutane is very safe and "don"t believe the horror stories".

Yes, kudos to Mark Dunn. He appears to be an advocate for anti-depressant safety.

.

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(@truejustice)

Posted : 07/01/2018 9:03 pm

What do you mean by advocate for anti-depressant safety??

pls elaborate.....

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