16 minutes ago, yetanotheraccutanevictim said:

@guitarman01Concerning the possible side effects from using HPBCD, you have to decide for yourself if your accutane side effects are worth living with. I personally am going to try the HP-cyclodextrin. I'll probably do a lower dose just for extra precaution. Maybe 200mg per kg (slow drip).

And I think the above statement you posted means that IV HPBCDcaused moreretinoid release from the liver into the serum than could be handled by the CD (by "handled" I mean grabbed and carried out of the body). That's why the kid being treated with cyclodextrin had symptoms of vitamin A overdose for a while. Some of the stored retinoids were released into circulation and not all of them could be gathered up quickly enough. Still, this is a great method for getting retinoids out of the liver it seems. Maybe we could do even smaller dosages just spread out over longer periods of time.

Edit: Or it means that the CD could not make it water-soluble at the rate at which is was coming out. So some remained fat-soluble. (and perhaps got carried into fat-cells or lymph). Not entirely sure though

Bloody hell guys - be careful here, I wouldn't go ingesting this stuff just in the hope that it will cure you of the bad side effects. Taking this approach with supplements is one thing but do do it with potentially another powerful drug might be insane till we know more.

Arent we still unsure as to what exactly has happened to us?? Half of us still think it's stored in the body ( mainly the liver ) whilst the rest believe it's long past through and has just left its damage on the way through!!?

UntilI know for sure that my liver is full of unwanted retinoids I wouldn't go taking more powerful drugs that might actually cause damage.

Maybe some of these intelligent lab scientists can shed some light on the matter?

Failing that - why don't we all just go knocking at the front door of Roche headquarters asking if they now know the exact mechanism of how Roccutane works....do they have anybody working on it??

Where is their level of responsibility during all this I ask?????

39 minutes ago, guitarman01 said:

 

@TrueJustice

Here's a PM I just sent out that others may want to read:
Eating retinol is a great way to displace the accutane and allow for its removal. However, it can cause symptoms to reappear as it is shuttled into circulation.

provitamin A seems to also help get rid of accutane toxicity:
"However, an excessive intake of beta-carotene appears to have carcinogen effects, possibly through its promotion of the eccentric (or asymmetric) pathway of beta-carotene cleavage, which produces breakdown products that might lead to the destruction of retinoic acid through the activation of the P450 enzyme, which in turn could decrease retinoid signalling leading to enhanced cell proliferation.Therefore dosage seems to be an important factor in beta-carotene action."

I took 36,000,000 IU of synthetic vit A from accutane: That would be MANY years of toxicity if I don't do liver flushing and things..
" Importantly, Vitamin A is a fat soluble vitamin that can be stored in the body, primarily in the liver as retinyl ester. This is highly beneficial in cases of Vitamin A deficiency:a supplement containing 200,000 IU can meet the patients daily requirement for four to six months"

More evidence that vit A can stay in the body for a LONG time
"Recently Stoltzfus et al. (1992,1993) reported thata single 300,000 IU vitamin A (equivalent of 90 mg retinol) supplement administered to mothers within a few weeks of birth was effective in raising milk vitamin A levels and in maintaining an improved level of vitamin A status in the infant for at least six months."

And to prove my argument that retinol helps get rid of accutane:
"Liver retinyl ester concentration can vary widely and still be considered to be in the normal range. In the rat,concentrations exceeding 510 g retinol/g liver support a normal output of retinol on its transport protein, retinolbinding protein (RBP)(Goodman, 1984; Harrison et al., 1987).If liver retinol falls below this level, RBP synthesis continues but secretion is impaired unless additional retinol is provided(Smith et al., 1973).Thus it appears that these last retinol reserves are not readily mobilized for secretion into plasma. The retinol molecule is very well conserved: it is eliminated from the body only after several passages between liver and peripheral tissues (Green et al., 1985)."

Post by Tryingtohelp2014:

"Yeah, i can only prove this anecdotally...like ive said a few times before....i know what i felt after months of extreme exercise and calorie restriction. i felt like i was taking 4x the amount of accutane as opposed towhen i was on the drug itself.... bleeding cracked lips/nose..peeling of the hands and soles of feet...extreme joint pain, hair shedding. i just felt toxic. now when i did this .... it was alreadyyears after having stoppedaccutane! As soon as i stopped exercising, and beganeating fat,putting on weight...the side effects went away by 75%.

taking more vitamin a does not help. no one should do this. I tried a few years ago and still have additional side effects from doing this.
@truejustice this drug appears to be very safe orally at the right dosage,based on studies.

31 minutes ago, yetanotheraccutanevictim said:

Potential way of determining if we are toxic with accutane?
https://www.ncbi.nlm.nih.gov/pubmed/19710158
Stable isotope techniques have important public health potential for the classification of VA status, including hypervitaminosis, because no other technique besides invasive liver biopsies, correctly identifies excessive liver VA stores.

unfortunately this wont be a test we will be able to get done for a long time, if ever. probably just at universities for research.

2 minutes ago, guitarman01 said:

taking more vitamin a does not help. no one should do this. I tried a few years ago and still have additional side effects from doing this.
@truejustice this drug appears to be very safe orally at the right dosage,based on studies.

You took more synthetic vitamin A? or from food like liver?

9 minutes ago, yetanotheraccutanevictim said:

12 minutes ago, guitarman01 said:

taking more vitamin a does not help. no one should do this. I tried a few years ago and still have additional side effects from doing this.
@truejustice this drug appears to be very safe orally at the right dosage,based on studies.

You took more synthetic vitamin A? or from food like liver?

synthetic palaimaite. still have calluses right below my fingers and eye floaters from it and many additional wrinkles on my hands. and that was years ago. I wouldnt trust fish liver oil either based on what palaimaite did to me . I would sure as hell take this hpbcd before id take more vitamin a

https://www.lookfordiagnosis.com/cases.php?term=Hypervitaminosis+A&filter=hypervitaminosis&values=24.406706&lang=1&from=10
actual case reports of vitamin a toxicity

and based on studies we read. its all the same. same type of toxicity. accutane was just not suppose to stay in the system. that was the whole point of it.

Anyway to measure LIVER vit A or retinoid metabolites ?

I had my serum measured and of course, came back normal.

1 minute ago, Mike San said:

Anyway to measure LIVER vit A or retinoid metabolites ?

I had my serum measured and of course, came back normal.

Potential way of determining if we are toxic with accutane?
https://www.ncbi.nlm.nih.gov/pubmed/19710158
Stable isotope techniques have important public health potential for the classification of VA status, including hypervitaminosis, because no other technique besides invasive liver biopsies, correctly identifies excessive liver VA stores.

And the blood will never be an accurate representation of total body retinoid levels. It's tightly regulated.

even if they did a liver biopsy does accutane look like vitamin a or would they specifically have to look for accutane?
you could almost lie your way into getting a liver biopsy. but then be like btw look for accutane while your in there as well. lol

1 minute ago, guitarman01 said:

even if they did a liver biopsy does accutane look like vitamin a or would they specifically have to look for accutane?
you could almost lie your way into getting a liver biopsy. but then be like btw look for accutane while your in there as well. lol

It's 13-cis-retinoic acid. But once ingested, most gets converted to all-trans-retinoic acid

those case studies i linked the guy had vitamin a toxicity but normal liver enzymes. I wonder if a liver ultrasound would show anything. Like non alcoholic fatty liver. just no doctor will do a liver biopsy with no clinical symptoms. It is just crazy they cant find one damn thing out of all these blood test. which im still waiting for my results btw. proball normal im sure
We should make it a point between all of us to have every single vitamin and mineral test you can have.
vitamin a check
folic acid good
b12 good
magnesium good
calcium good
vitamin d good

We have clinical symptoms,  just nothing specifically that would warrant them to order a biopsy

Maybe we have to be more trusting of the MDs then... if our liver enzymes are in fact normal,   perhaps there wouldnt be a large store of vit A metabolites there ?

Just would be interesting to see at least some biopsy results post accutane !

12 minutes ago, Mike San said:

We have clinical symptoms, just nothing related to liver disease true.

The thing is, you can always find an open minded GP, but you cant find open minded specialists and those are the guys who do this.

Maybe we have to be more trusting of the MDs then... if our liver enzymes are in fact normal, perhaps there wouldnt be a large store of vit A metabolites there?

https://www.lookfordiagnosis.com/cases.php?term=Hypervitaminosis+A&filter=hypervitaminosis&values=24.406706&lang=1&from=10
liver enzymes normal but still toxic levels of vitamin a in liver. first study

any clues here? that may effect us in a much more minor fashion http://www.dailymail.co.uk/health/article-3330317/Teenager-life-wrecked-controversial-acne-drug-Rare-effect-nearly-killed-15-year-old-lost-hair-diabetic.html
they said the hair loss was from stress. F THAT!

Excellent thank you... printing that off. I wonder what prompted them to do a biopsy given normal liver enzymes AND asymptomatic.

4 minutes ago, Mike San said:

Excellent thank you... printing that off. I wonder what prompted them to do a biopsy given normal liver enzymes AND asymptomatic.

idk maybe told dr he took a shit load of vitamin a and had all these symptoms

Ill ask my doc next time I see him about getting one done.... do you know the equivalenyof 80mg accutane to vitamin A IU ?

Telling him in "millions of IU" (something he can relate) vs 'oh I took 80 mg accutane every day', will be more alarming to him.

11 minutes ago, Mike San said:

Ill ask my doc next time I see him about getting one done.... do you know the equivalenyof 80mg accutane to vitamin A IU ?

Telling him in "millions of IU" (something he can relate) vs 'oh I took 80 mg accutane every day', will be more alarming to him.

Thanks!!

Looks like I cant really compare the 2 after all  

http://www.acne.org/messageboard/topic/276123-how-many-iu-s-of-vitamin-a-are-needed-to-have-an-accutane-dose/

"  when you take vitamin A it gets converted to tretinoin (acctuane),   BUT it also gets converted to a shitload of other chemicals that are even more toxic than accutane and have no effect on your skin.   Accutane is an isolated form of tretinoin, so when you take it you're body is fully absorbing what works and isn't converting it into other stuff that is toxic for your liver. thats why it is considered a vitamin A derivative. "

I doubt they do biopsy to test for isoretinoin anyway

2 minutes ago, Mike San said:

Thanks!!

Looks like I cant really compare the 2 after all  

http://www.acne.org/messageboard/topic/276123-how-many-iu-s-of-vitamin-a-are-needed-to-have-an-accutane-dose/

"  when you take vitamin A it gets converted to tretinoin (acctuane),   BUT it also gets converted to a shitload of other chemicals that are even more toxic than accutane and have no effect on your skin.   Accutane is an isolated form of tretinoin, so when you take it you're body is fully absorbing what works and isn't converting it into other stuff that is toxic for your liver. thats why it is considered a vitamin A derivative. "

I doubt they do biopsy to test for isoretinoin anyway

no youd have to lie a little bit or say it was vitamin a.its still considered surgery though but pretty safe. but i would take this hpbcd before id get a biopsy thats prob alot of money too. I believe at least me and yetanotheraccutane victim are going to try it. I will take it orally and let people know if any results.

25 minutes ago, guitarman01 said:

31 minutes ago, Mike San said:

Thanks!!

Looks like I cant really compare the 2 after all  

http://www.acne.org/messageboard/topic/276123-how-many-iu-s-of-vitamin-a-are-needed-to-have-an-accutane-dose/

"  when you take vitamin A it gets converted to tretinoin (acctuane),   BUT it also gets converted to a shitload of other chemicals that are even more toxic than accutane and have no effect on your skin.   Accutane is an isolated form of tretinoin, so when you take it you're body is fully absorbing what works and isn't converting it into other stuff that is toxic for your liver. thats why it is considered a vitamin A derivative. "

I doubt they do biopsy to test for isoretinoin anyway

no youd have to lie a little bit or say it was vitamin a.its still considered surgery though but pretty safe. but i would take this hpbcd before id get a biopsy thats prob alot of money too. I believe at least me and yetanotheraccutane victim are going to try it. I will take it orally and let people know if any results.

 Where do you purchase this from?

Are you going to get basic bloods done before or after or just go off of feel.  

thanks for the advice.     Cant wait to hear your feedback on it.

On 1/1/2016 8:25:52, IndigoRush said:

I'm really struggling at the moment. As soon as I realise all my issues were started because of this drug I get so stressed out knowing I don't have a clue what is going on. 10 years and counting. I just don't know how to go on from here. I can't deal with this chronic fatigue for the rest of my life. Happy 2016 :/

HEY PLEASE CHECK YOUR INBOX MESSAGES !!

On 19.6.2015, 03:49:40, MonsterDiesel said:

I have. Everything is within the normal range. LH, FHS, prolactin, SHBG, DHEA, IGF-1, thyroid all normal..well, low normal. But Doctor's see nothing wrong with it. Testosterone hovers around the 200's. If there was a problem with the testicles, LH would be high. If the problem was in the pituitary or hypothalamus, LH would be very low. But everything reads as "normal." Doctors don't know what to do, other than use TRT.

I saw an endo. He went as far as to say that a total T of 230 something was perfectly normal.

Edit: I wanted to add something. People here have been asking if anyone has gotten a liver biopsy. Well, I have. I took accutane in 2001. The biopsy was done in...2008 or 2009. I was seeing a diagnostician. He called him the Doctor House of this place. Anyways, he agreed I had some sort of systemic disease because I was all fucked up. Mind you, at this time, I still didn't think Accutane had any play here, but I suspected it. Doctor was guessing hemochromatosis or maybe copper overload. All they found was Hydropic change in the hepatocytes or vacuolar degeneration. Just means something had damaged the liver but there was no necrosis or fibrosis. What did the damage? Accutane I suspect.

He has done a biopsy

http://www.ncbi.nlm.nih.gov/pubmed/14978883

6 hours ago, vianello said:

He has done a biopsy

http://www.ncbi.nlm.nih.gov/pubmed/14978883

Quote

A twenty year old, foreign-born sportsman visited the Out-patient Clinic of our Hospital with complaints of progressive arthralgia, hepatomegaly and increasingly abnormal liver function tests of six months duration. Tests for virus hepatitis were negative, alcohol abuse or drug addiction could be excluded. An open needle biopsy of the liver was performed and the tissue was examined with the light and electron microscope. On routine light microscopy no abnormality was recognized. Electron microscopic examination revealed changes characteristic of vitamin A toxicity: hyperplasia of the perisinusoidal (Ito) cells with evidence of their activation and transformation, increased storage of lipids and vitamin A, perisinusoidal fibrosis, damage of the sinusoidal wall, partial necrosis in hepatocytes and an increased number of lysosomes, megalysosomes and smooth endoplasmic reticulum (SER), the signs of cholestasis as well as an increased number of Kupffer cells in the lobules etc. Histochemical examination showed a high content of vitamin A in the transitional (Ito) cells and in hepatocytes. These data led to further questioning of the patient who disclosed that he had acne conglobata which had been treated with Isotretionin, 20 mg/day, for more than half a year. After the therapy was stopped, the symptoms of polyarthralgia improved and after a few months they ceased entirely, however, the laboratory data returned to normal only after a long period of time. This case indicates that electron microscopic examination of the liver biopsy may play an important role in the recognition of vitamin A intoxication. It also illustrates that symptoms of joint disease may be caused by long-term retinoid treatment. The authors have presented the latest clinical and experimental data concerning the changes in the liver, joints and skeleton caused by retinoid intoxication.

This is a really interesting study! I've often wondered what a liver biopsy results for someone post-accutane would be like (I've had a couple of ultrasounds on my liver due to 'pain under the right lower rib', like the feeling of a swollen liver, and I still get this) but nothing showed abnormal on the scans, liver panel blood tests within range too). So this liver biopsy confirms a few things would have been speculated on already, namely;

• increased storage of lipids and vitamin A
• fibrosis (excessive accumulation of scar tissue that results from ongoing inflammation and liver)
• signs of cholestasis (condition where bile cannot flow from the liver to the duodenum)

Would be good to see some other biopsy results, but obviously this at least gives us something to go on. On the assumption we have the above conditions, and those others mentioned in the study, then taking supplements to tackle those things would seem like an obvious direction to take (many have already been touched upon, taurine, NAC, TUDCA, also SAMe - which seems to come up a lot - something I've got but have yet to try)

And maybe liver flushes should be given more credit (Im quick to write them off as a waste of time due to lack of firm evidence to support them, but I did try one once), but some people seem to be pretty convinced theyve helped..

http://www.ncbi.nlm.nih.gov/pubmed/25081735
Do antihistamines make accutane and vitamin a more water soluble after being released from the liver and in circulation?

16 hours ago, guitarman01 said:

16 hours ago, Mike San said:

 

I believe at least me and yetanotheraccutane victim are going to try it. I will take it (HPB-cyclodextrin) orally and let people know if any results.

17 minutes ago, yetanotheraccutanevictim said:

The response to me:
I am not a physician, I cannot give medical advice nor do I intend to. My thoughts come from my extensive experience with the medical use of Trappsol HPB.

Oral will not be efficacious. Acute treatment IV with long term continuous subcutaneous administration until the underlying cause is corrected seems to me to be the best plan.

well that is discouraging I really dont feel like iv'ing this stuff at all. I just cant image it wouldnt have a effect. will probably still try a amount orally as long as I got the stuff and knowing the safe dosages.