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Repairing the long-term damage from Accutane

 
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157
(@chico-esposito)

Posted : 04/23/2013 11:50 am

Things that may address the lack of sebum are high dose biotin 15-20mg of the stuff per day has been known to increase sebum production in the body. The body makes sebum with linoleic acid and oleic acid. Oleic acid is undesirable and is usually used by the body in the absence of linoleic acid, it's partly the reason why people have acne and other skin complaints in the first place. The body wants to use linoleic acid and that creates a healthy skin barrier and healthy sebum.
Sources high in linoleic acid are flax oil, hemp oil, borage oil, evening primrose oil......olive oil is very high in oleic acid so i tend to stay away from that one. These may help you produce more sebum but you may react to flax, it seems to cause some problems with accutane sufferers.
The internal dryness is more about hyaluronic acid, chondroitin sulfate and collagen, which are the lubricating components of the joints. I've heard people reference baxyl liquid for it's hyaluronic acid content as a help. Theres also a very inexpensive way to do it. All you'll need is a slow cooker and some bones, i order mine online, you can use chicken, lamb or beef bones it's really non specific. I have one like this
You put the bones in the slow cooker, then add 2 tablespoons of apple cider vinegar (i use braggs) add water until the bones are submerged then switch the heat on.........you leave it too cook on the low setting for 24 hours or the high setting for about 12 hours. Once it's finished you put the broth into mason jars, i use a sieve to make sure non of the bones or cartliage get through.Then put it in the fridge for the next day. In the morning you'll see that the fat in the broth has risen to the top and formed an almost wax like substance, remove all of that and you should be left with a gelatin rich broth that looks almost jelly like if you've done it correctly.
Empty the broth into a small pan and heat for about 4-5 minutes until it's liquid and warmed through. Then just drink it, it's full of gelatin, collagen, hyaluronic acid and chondroitin sulfate. Bone broth daily maybe adding something like baxyl liquid to the regimen will go some way to helping the internal dryness.
Word of warning if you order chicken carcasses they come with giblets usually wrapped in film in the cavity of the bird, throw them out they contain a lot of vitamin A, just discard them and use the body of the bird. Also make sure to remove the wax on the top of the broth which is fat. If there are any fat soluble vitamins present thats were they'll be so discard. The gelatin is what you want.
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jellyy, jellyy, jellyy and 6 people reacted
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21
(@aharon)

Posted : 04/23/2013 3:18 pm

Yes, gelatin broths are good. You can buy gelatin and add it to some kind of liquid or soup.

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(@camaroz28)

Posted : 04/23/2013 8:25 pm

Theres two types of dryness, most accutane sufferers have both. The first is there is no production of sebum, so the skin on the face / body looks very dry, as does the hair because it's not lubricated. The second is the internal dryness which is the lubrication of the joints, cartilage and bones of the body, which creates joint cracking, pain, weakness.

Yes, but it is also systemic chronic cellular dehydration; it's like our cells can't retain water anywhere near as effectively as they could in the past. We are locked in a permanent diuresis loop for years. I would wake up in the morning, then head out for the day - even on social stuff. I would spend the whole day drinking water (3+ litres), and at the end of the day I would weigh 3 kilos less. I would only recover that lost water weight in my sleep. Of course, I spent the day running to the toilet, because the water would run straight out of me. I suffered from hypotension for 3 years, and that's a nightmare in itself as far as fatigue and all the rest of it. Forget all the androgen receptor damage and what have you.

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148
(@oli-girl)

Posted : 04/23/2013 8:30 pm

Hence the reason why some not all suffers have success with hyluronic acid as it plays a crucial role in hydrating the tissues and a important role with our cells!

 

Hence the reason why some not all suffers have success with hyluronic acid as it plays a crucial role in hydrating the tissues and a important role with our cells!

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35
(@user187201)

Posted : 04/23/2013 8:39 pm

But biotin and hyluronic acid don't work, I can't keep holding onto hope that this will get better I feel like I'm just shrivelling up, my hair is dead my skin is shrivelled, my mouth and nose and lips are so dry I'm really not coping with all this.

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26
(@camaroz28)

Posted : 04/23/2013 8:47 pm

Hence the reason why some not all suffers have success with hyluronic acid as it plays a crucial role in hydrating the tissues and a important role with our cells!

 

Hence the reason why some not all suffers have success with hyluronic acid as it plays a crucial role in hydrating the tissues and a important role with our cells!

Yes, its utility in the setting is self evident, but it isn't going to stop the diuretic effect. At the very least, all DHT inhibitors and anti-androgens should be off the table. There are going to be chaps out there who are going to drive around town in their faux Stangs with saw palmetto scented car air freshners, because they know it all; but what are you going to do?

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91
(@josephbuchignani)

Posted : 04/23/2013 9:07 pm

"Yes, but it is also systemic chronic cellular dehydration; it's like our cells can't retain water anywhere near as effectively as they could in the past. We are locked in a permanent diuresis loop for years. I would wake up in the morning, then head out for the day - even on social stuff. I would spend the whole day drinking water (3+ litres), and at the end of the day I would weigh 3 kilos less. I would only recover that lost water weight in my sleep. Of course, I spent the day running to the toilet, because the water would run straight out of me. I suffered from hypotension for 3 years, and that's a nightmare in itself as far as fatigue and all the rest of it. Forget all the androgen receptor damage and what have you."
This is fascinating Camaroz. Now that I've fixed the dominating gut problems, I'm noticing this. Sometimes dizzy when rising, dehydration easy to happen. What is the solution? It's not a terrible problem for me, but maybe room for improvement.
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148
(@oli-girl)

Posted : 04/23/2013 10:06 pm

Livetoregret & Camaroz28 - Note that is why I said some and NOT ALL! If you have autoimmune diseases (like myself) and they are flaring or not undercontrol then I can take as many supplements I want with no sucess on my dryness, but there are some suffers without autoimmune diseases in which H.A., GLA and biotin has helped.

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26
(@camaroz28)

Posted : 04/23/2013 10:41 pm

OliGirl: There was no mix up; we got the point; it is self-evident that water comes before all else in the body - that was my point! You have to accept you are longer dealing with a pot, but a sieve. Liveto: It will get better after years; I know it is not what you want to hear, but it will let up. Even those with no apparent autoimmune markers don't respond; I was one of them.

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(@camaroz28)

Posted : 04/23/2013 11:00 pm

 

"Yes, but it is also systemic chronic cellular dehydration; it's like our cells can't retain water anywhere near as effectively as they could in the past. We are locked in a permanent diuresis loop for years. I would wake up in the morning, then head out for the day - even on social stuff. I would spend the whole day drinking water (3+ litres), and at the end of the day I would weigh 3 kilos less. I would only recover that lost water weight in my sleep. Of course, I spent the day running to the toilet, because the water would run straight out of me. I suffered from hypotension for 3 years, and that's a nightmare in itself as far as fatigue and all the rest of it. Forget all the androgen receptor damage and what have you."
This is fascinating Camaroz. Now that I've fixed the dominating gut problems, I'm noticing this. Sometimes dizzy when rising, dehydration easy to happen. What is the solution? It's not a terrible problem for me, but maybe room for improvement.

It's not really fascinating at all to me; because it was so apparent it was by biggest problem at the beginning. That probably also tells where we are with severity in relation to one another. I only developed digestion issues after years of fighting every other symptom with liver tonics; at the end, I was just pushing too hard. The liver tonics would keep upright for 10 hours a day so I could work.

Isaac Brock of Modest Mouse once sang that: "The one thing you taught me about human beings, is that they aren't made of anything other than water and sh*t." Perhaps a crude point, and perhaps a little anti-humanistic, but it was still genius. It is water that forms ALL of the biological matter that we think of as the solid vessel containing the fluid. I am not going to pretend to have the answer on resetting default settings in this regards. That is why we need research. You can be sure that impeded hormone expression is a big player.

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91
(@josephbuchignani)

Posted : 04/24/2013 12:03 am

"That probably also tells where we are with severity in relation to one another."

I don't think that alone is enough, because symptoms can be quite different. Mine rendered me unable to work for 3.5 years, and I'm hard to stop. Most of that time was spent horizontal, out of necessity. It sounds like you had a similar effect for different reasons.

You tried a lot of things. Is your only useful recommendation to drink more water?

Did you try B-vitamins? There's an interesting DNA connection there.

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223
(@gladiatoro)

Posted : 04/24/2013 1:12 am

 

Hence the reason why some not all suffers have success with hyluronic acid as it plays a crucial role in hydrating the tissues and a important role with our cells!

 

Hence the reason why some not all suffers have success with hyluronic acid as it plays a crucial role in hydrating the tissues and a important role with our cells!

Yes, its utility in the setting is self evident, but it isn't going to stop the diuretic effect. At the very least, all DHT inhibitors and anti-androgens should be off the table. There are going to be chaps out there who are going to drive around town in their faux Stangs with saw palmetto scented cars air freshners because they know it all, but what are you going to do?

Funny Z28 lol , it is actually , you do have a sense of humor after all and I though you were just a dull chap ha.

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35
(@user187201)

Posted : 04/24/2013 2:52 am

It's already been over 2 years now and it's only gotte worse over time, the drying out kicked in over a year after being off it. April 2012 the whole game changes for me and its been nothing bit down hill since..

 

Rheumatoid factor alone is not enough to diagnose an auto immune diease with no ana antibodies present and everything else within normal range (so I'm told)..

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26
(@camaroz28)

Posted : 04/24/2013 3:21 am

@Joseph:

No my only recommendation is not more water; I made that clear with the pot and sieve analogy I employed with Oligirl. I also made it clear, that the only thing that worked in a notable way was liver tonic: first at recommended doses, and then a bit higher. Effects wane after that. Ive tried everything. Waning is universally reported as one of the principal limitations with any treatment, after modest initial success.

When I spoke of my side effects severity, I was not trying to challenge you to a peeing competition, although it fits brilliantly literally and metaphorically in this setting. When LivetoRegret or I speak about the persistence and the fundamentality of the dryness, we are talking code, in that we are talking about a hormonal root which is impelling those changes. The dryness severity and longevity are just symptoms that make the suffering tangible, palpable and quantifiable in discourse. Super dryness is obviously related to a greater degree of androgen ablation. That is abundantly clear; inhibition of DHT and IGF-1; sebaceous gland death; changes to many of the genes governing and associated with the androgen receptor; changes to transcription factors, etc. all equal dryness and dehydration. In any case, you yourself said that gut problems were a dominating factor: enough said, I feel. I could go into more details about my sides, but that ultimately wont accomplish anything.

@Gladiola: You are a cheeky little trickster; you love to get one up on me (you'll get there one day). I promise that if we ever do go out to a celebration for a cure, I am going to buy you a jumbo scrapbook so you can draw and write till your little heart is content, while all the adults are talking. I am taking a break; everyone, please be civil.

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(@user187201)

Posted : 04/24/2013 6:28 am

Hahaha Gladiola is my favourite bloom.

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(@josephbuchignani)

Posted : 04/24/2013 7:05 am

Ok, the reason I'm confused is "liver tonic" is a very broad term. I believe I've used liver herbs with little or no negative side effects but no radical improvement either. What did you use?
The best way to measure dehydration is urine color, I assume. I quite rapidly fluctuate from clear to dark yellow and don't seem to drink enough regularly. It seems to be correlated to dizzyness when rising. Can you comment on this?
Do you think that Tongkat Ali or sublingual Deer Antler Spray would improve dryness? They target testosterone and growth factor respectively. Have you tried B-vitamins? A description of your sides would be interesting.
Also, for those with GI trouble I note that I seem to have moderate trouble with storebought yoghurt and/or kefir. It is not consistent and a bit ambiguous, I haven't isolated the cause, mostly due to experimental hygeine, But the additional milk protein solids added for thickening may be a cause, and maybe kefir is inherently irritating. Only homemade yoghurt is proven to work consistently for me, so far.
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180
(@roland1968)

Posted : 04/24/2013 8:16 am

I have given up the hope, that there is a cure for the long term accutane damage. The damage on the body is so complex, that it can not be fixed with drinking lots of water or vitamin supplement. It is more than 10 years ago that I took accutane and nothing is getting better. The opposite is the case. It is getting worse and worse. It haunts me every day, every single day, that I took this drug. It ruined my life.

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26
(@camaroz28)

Posted : 04/24/2013 9:29 am

@Joesph:

Even though I am from Australia and you are from the USA, I can attest that your basic run of the mill liver supplement at a health food store is not dissimilar to what we have here. You know how it goes: Milk Thistle, Globe Artichoke, Turmeric, Alpha Lipoic Acid, NAC, etc. At first they worked at the recommended doses, but then I had to double and triple the doses; and, obviously that wasnt going to be sustainable. I started to show elevated liver markers. The relief would come in the form of the lessening of brain fog, hypotension would lift for half a day; and, I would get a bit of relief from the fatigue. What got me into trouble was beta carotene; I had taken it for years, without incident after two courses of Accutane, that I escaped from completely unscathed.

Everyone knows a course of Accutane is extremely unpleasant; but, when things went pear shaped after the beta carotene, I learnt what real pain was. My joints ached so much and my chest hurt so much; the brain fog was so bad I couldnt count my money properly at a store, if I had bought some jumpers. Shop assistants would get frustrated, and I would get them to count it for me. I would forget where I parked my car at the shopping center. It was relentless and incredibly, so dissimilar to what I had experienced on the Accutane itself. I admit that I never really believed the extreme depression stories and I couldnt understand the suicides; but, I was shown firsthand what things are like when all the sides get ratcheted up to maximum. I couldnt go through that again. The liver supplements got me through that period; otherwise I would not have made it. Ultimately, I tried the liver tonics from Sensible Health, and I felt that they were the best. I cant explain any better than that how they alleviated things: the pain is not demonstrable.

Urine colour works as a crude marker when you are in good health: it should always be clear; but that is too simplistic to really work when you are facing the dehydration I experienced. You can feel it because you go to the toilet every thirty minutes. My lips were embarrassingly red for years; that didnt even happen with the Accutane. I would also have big trouble when they attempted to draw blood; they would stick a needle in me and nothing would come out. Blood lacked volume; obviously wasnt getting around the body with the same efficacy that biological processes demanded. You sound like you have orthostatic hypotension; blood is pooling in the lower part of your body and isnt responding promptly enough to your bodily changes. Again, the water weight loss which was impossible to restore during waking hours was a dead giveaway.

Tonkat Ali ticks all the boxes on paper, but that is if you have clear hormonal anomalies that are showing on your bloods. You may, I did not; and, it didnt help me. IGF-1 supplements are again great on paper; but, this syndrome is insidious, in that even when clearly marked deficiencies are seemingly met with herbs or serious pharmaceuticals, results are only felt for a very short while, before it all falls away. We all start out thinking that we can out smart this thing with infinite subtle tweaks, but it shows you whose boss.

Buddy, I have tried B vitamins and every other perceived quick fix you care to name, but it doesnt budge for long. I have been lactose intolerant for the past 5 years, so I cant comment on the diary component. We need research. I am off to the Pro-touring forum for a change of pace.

I have given up the hope, that there is a cure for the long term accutane damage. The damage on the body is so complex, that it can not be fixed with drinking lots of water or vitamin supplement. It is more than 10 years ago that I took accutane and nothing is getting better. The opposite is the case. It is getting worse and worse. It haunts me every day, every single day, that I took this drug. It ruined my life.

You are absolutely right, and you have not misspoken at all. I get tired of all the tree hugging hippie propaganda here too, at times. You are not alone; I am going through the exact same thing.

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148
(@oli-girl)

Posted : 04/24/2013 10:26 am

It's already been over 2 years now and it's only gotte worse over time, the drying out kicked in over a year after being off it. April 2012 the whole game changes for me and its been nothing bit down hill since..

 

Rheumatoid factor alone is not enough to diagnose an auto immune diease with no ana antibodies present and everything else within normal range (so I'm told)..

So thoose stupid doctors tell you! I am sure you researched this and know they are full of sh*t!

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157
(@chico-esposito)

Posted : 04/24/2013 11:16 am

 

"Yes, but it is also systemic chronic cellular dehydration; it's like our cells can't retain water anywhere near as effectively as they could in the past. We are locked in a permanent diuresis loop for years. I would wake up in the morning, then head out for the day - even on social stuff. I would spend the whole day drinking water (3+ litres), and at the end of the day I would weigh 3 kilos less. I would only recover that lost water weight in my sleep. Of course, I spent the day running to the toilet, because the water would run straight out of me. I suffered from hypotension for 3 years, and that's a nightmare in itself as far as fatigue and all the rest of it. Forget all the androgen receptor damage and what have you."
This is fascinating Camaroz. Now that I've fixed the dominating gut problems, I'm noticing this. Sometimes dizzy when rising, dehydration easy to happen. What is the solution? It's not a terrible problem for me, but maybe room for improvement.

It's not really fascinating at all to me; because it was so apparent it was by biggest problem at the beginning. That probably also tells where we are with severity in relation to one another. I only developed digestion issues after years of fighting every other symptom with liver tonics; at the end, I was just pushing too hard. The liver tonics would keep upright for 10 hours a day so I could work.

Isaac Brock of Modest Mouse once sang that: "The one thing you taught me about human beings, is that they aren't made of anything other than water and sh*t." Perhaps a crude point, and perhaps a little anti-humanistic, but it was still genius. It is water that forms ALL of the biological matter that we think of as the solid vessel containing the fluid. I am not going to pretend to have the answer on resetting default settings in this regards. That is why we need research. You can be sure that impeded hormone expression is a big player.

I agree about the systematic dehydration. Hyaluronic acid holds up to 1000 times it's weight in water. it can plump cells and hydrate from within. Of course you'll have to drink lots of water as well to see the benefit. Some people have claimed success with a supplement called baxyl which is basically liquid hyaluronic acid. I chose to eat alot of bone broth as my source because it contains alot of hyaluronic acid as well as other components relative to it.

 

But biotin and hyluronic acid don't work, I can't keep holding onto hope that this will get better I feel like I'm just shrivelling up, my hair is dead my skin is shrivelled, my mouth and nose and lips are so dry I'm really not coping with all this.

How much did you take? and for how long?

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91
(@josephbuchignani)

Posted : 04/24/2013 11:48 am

Interesting, thanks. Camaroz, I'm quite familiar with the one step forwards, two steps back game. I played it a long time. I think a zero inflammatory diet might be the key to avoiding that game. It's worked for me. Perhaps from there, one can begin to stack lasting benefits from supplements.
I will prioritize trying low fat bone broths and liver tonics.
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148
(@oli-girl)

Posted : 04/24/2013 2:25 pm

Camaroz28- Are you the same person who posted on the Roaccutane Action Group????

Well I don't usually vent, and not to be a downer, but today was the begining of $36,000 dollars worth of work on my teeth that should be completed in the next year or 2! Yep Crowns on every tooth as my mouth is so dry from the Accutane induced Sjrogren's and now that I am a type 1 diabetic I am tired of going to the dentist all the time to have them temp fixed, so just another lovely gift from Roche angry.png

I guess I should note that in the past year I have gotten some of my saliva back, so my mouth isn't the sahara desert at least!

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27
(@sbowlchica)

Posted : 04/24/2013 3:16 pm

Ok, quitting spiro. I don't think it's going to help. DHEA is my main issue, which I don't think can be fixed, but I can try and knock out the side effects. Going to start on hyaluronic acid to take care of this awful dehydration and dryness. I have wrinkles at 21 and my eyes sting all the time.

Also: tea and ACV scalp treatments are magic! For the first time, I left tea and ACV on my scalp for one hour. And when I washed it, boom! no shed! no dandruff! I guess inhbiting DHT topically helps. And caffeine stimulates hair growth, which is a plus.

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223
(@gladiatoro)

Posted : 04/24/2013 3:55 pm

BAXYL does work , as I have repeated many times on this forum but one has to take this supplement for at least two months to see lasting

benefits, a few years ago I found this product and I was pleasantly surprised when I tried it out , it's the best hyaluronic acid on the market it's not

made with rooster comb as others and it's not in pill form as others which is useless I tried those , it is made with vegan (vegetables) is in liquid

form and it works , many people have benefited from this supplement including me , it really does help with the dryness , bone broth is something I

haven't tried as it does contain hyaluronic acid too amongst other nutrients.

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157
(@chico-esposito)

Posted : 04/24/2013 5:49 pm

On 4/25/2013 at 3:25 AM, oli girl said:

Camaroz28- Are you the same person who posted on the Roaccutane Action Group????

Well I don't usually vent, and not to be a downer, but today was the begining of $36,000 dollars worth of work on my teeth that should be completed in the next year or 2! Yep Crowns on every tooth as my mouth is so dry from the Accutane induced Sjrogren's and now that I am a type 1 diabetic I am tired of going to the dentist all the time to have them temp fixed, so just another lovely gift from Roche [Edited image out]

I guess I should note that in the past year I have gotten some of my saliva back, so my mouth isn't the sahara desert at least!

Thats the sjrogen's that causes that isn't it? obviously accutane was the cause, good luck with that oil girl.

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