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Repairing the long-term damage from Accutane

vitamin d vitamin a vitamin e biotin garlic milk thistle depression

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#2641 sbowlchica

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Posted 18 March 2013 - 04:55 PM

Let us know when it's up! Maybe we can have individual topics for the things we're trying.



Recovering from Accutane-related hair loss.

(over a year and a half after stopping...)


#2642 camaroz28

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Posted 18 March 2013 - 07:14 PM

Let us know when it's up! Maybe we can have individual topics for the things we're trying.

 

Yes perhaps; but, maybe we should recognize that no one with real life threatening and debilitating side effects is going to Iherb their way out of this, despite protestations to the contrary by self-confessed Google experts. I mean, it’s only been 30 years with essentially no real inroads made; and, no, liver flushes and colonic irrigations aren’t inroads into anything tangible except your midsection. The best docs who have had the decency to concede their precious meds can ruin peoples’ lives (only a handful) have essentially no idea what has transpired. It may be time to accept that we can’t dog paddle our way to shore. Perhaps we need a foundation with donations so that real research can begin. At the very least, donations could be used to bolster those amassed by the Propecia group; I understand there was some interest by that group.    


"Fret not fellas. I've got a 145 IQ, zen pain tolerance, the resilience of a cockroach, the survival instincts of a rat. I'll win; it's what I do. And then I'll help all of you, forgetting no one; I swear."

 

"I did get some fatigue and minor cramps from taste testing spicy food I was cooking. Even though I didn't swallow and rinsed, the residue got me. This hypersensitivity is annoying."

 

 

Thus spoke Joseph Buchignani.


#2643 MovingOn

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Posted 18 March 2013 - 08:18 PM

you guys are having some great ideas! Put them into action please!! :)



#2644 x2222

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Posted 18 March 2013 - 08:35 PM

I have all the main symptoms that everyone here seems to have but I was wondering about one other that is not mentioned. Towards the end of my accutane course I developed a dull ache in my liver that has lasted almost 10 years since finishing accutane. It comes and goes but is most prevalent when I'm tired, dehyrdated (despite driking tons of water), or occasionally try liver cleansing supplements such as milk thistle or calcium glucorate. Usually when I'm having this problem my skin gets extra pale/ pasty, it breaks out, and I get brain fogged. Sometimes I can even feel the pain on the outside as it prevents me from sleeping on my right side.

 

Anyone else have this kind of issue? My blood tests have never indicated any sort of problem in all these years. I even had my doctor send me for an unltrasound that was negative. I've just learned to live with it and manage my diet very, very carefully.


Edited by x2222, 18 March 2013 - 09:05 PM.


#2645 Livetoregret

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  • Interests:finished taking Roaccutane December 2010.
    Takin this drug has been the worst decision I have ever made and I have regretted it every day since.
    Doseage: 60:40 mg alternating daily for 11/12 months
    Sideffects:None till course was over.
    Now - SEVERE dry/brittle hair.
    HAIRLOSS - lost at least 70% and continues...acne came back in July, worse than I ever suffered from it. I now have back, chest, neck & cheeks that are covered.
    So now Im bone dry with no natural hydration with horrific acne. As a 31 YO woman with now destroyed skin & hair.
    My side effects include: Chronic Dry mouth
    Severe dry,tight,dehydrated, ashy,mottled,discolored (yellow & red),wrinkled,scarred poorly healing skin
    Facial fat atrophy - fatloss. Hollow eyes & cheeks
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Posted 19 March 2013 - 12:37 AM

Let us know when it's up! Maybe we can have individual topics for the things we're trying.

 

Yes perhaps; but, maybe we should recognize that no one with real life threatening and debilitating side effects is going to Iherb their way out of this, despite protestations to the contrary by self-confessed Google experts. I mean, it’s only been 30 years with essentially no real inroads made; and, no, liver flushes and colonic irrigations aren’t inroads into anything tangible except your midsection. The best docs who have had the decency to concede their precious meds can ruin peoples’ lives (only a handful) have essentially no idea what has transpired. It may be time to accept that we can’t dog paddle our way to shore. Perhaps we need a foundation with donations so that real research can begin. At the very least, donations could be used to bolster those amassed by the Propecia group; I understand there was some interest by that group.    

I do agree. Were all pretty screwed. I know Im stuck in my own personal hell between losing my hair and my prematurely aged skin etc etc etc

 

My hope is that the combination of mustering up enough support between all of us, my work with the change organisation assisting with media exposure as well as a comprehensive website will bring enough attention to our suffering. Research will only be initiated if there is money to be made - which there clearly is not.

I have the Stem cell Foundation also attempting to help us,

 

Hopefully we wont have to suffer the rest of our lives guys. Strength in numbers. xx



#2646 camaroz28

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Posted 19 March 2013 - 04:32 AM

 

Let us know when it's up! Maybe we can have individual topics for the things we're trying.

 

Yes perhaps; but, maybe we should recognize that no one with real life threatening and debilitating side effects is going to Iherb their way out of this, despite protestations to the contrary by self-confessed Google experts. I mean, it’s only been 30 years with essentially no real inroads made; and, no, liver flushes and colonic irrigations aren’t inroads into anything tangible except your midsection. The best docs who have had the decency to concede their precious meds can ruin peoples’ lives (only a handful) have essentially no idea what has transpired. It may be time to accept that we can’t dog paddle our way to shore. Perhaps we need a foundation with donations so that real research can begin. At the very least, donations could be used to bolster those amassed by the Propecia group; I understand there was some interest by that group.    

 Research will only be initiated if there is money to be made - which there clearly is not.

I don't think there is 'real' money to be made by those helping the Propecia group, but it is nevetheless happening. I understand that they were able to garner the interest of researchers because of the purported epigenetic root of the problem, which, of course, ties into current interests for that community. They may never get to the 'root cause' or get the money to develop some new drug (another potential set of problems), but they are still taking the best possible fight they can to the ring; and, no one could possibly ask for any more, and that is the point. 


Edited by camaroz28, 19 March 2013 - 04:33 AM.

"Fret not fellas. I've got a 145 IQ, zen pain tolerance, the resilience of a cockroach, the survival instincts of a rat. I'll win; it's what I do. And then I'll help all of you, forgetting no one; I swear."

 

"I did get some fatigue and minor cramps from taste testing spicy food I was cooking. Even though I didn't swallow and rinsed, the residue got me. This hypersensitivity is annoying."

 

 

Thus spoke Joseph Buchignani.


#2647 MovingOn

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Posted 19 March 2013 - 12:19 PM

Hey all,

 

So this is a random inquiry.  I have take a teaspoon of coconut oil for the past two days and I noticed that I would become very chilly and feel nauseous and get a wicked headache. I have taken the same oil before with no problems.  Any ideas? Am I all of a sudden not able to process fat?? I havn't had problems with this before...i've also never combined the coconut oil with the Evening Primrose until these past few days.  Appreciate your guys' expert advice!! Seriously, I would go to you guys over my PCP any day...fucking idiot. Anyways...I digress lol



#2648 Max-

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Posted 20 March 2013 - 04:05 AM

How are you guys doing?


A quick temper will make a fool of you soon enough

#2649 sbowlchica

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Posted 20 March 2013 - 10:36 AM

@sdro123

 

I've heard conflicting theories on what you are experiencing. Some say it's candida dieoff, and before the candida dies, releases mycotoxins that gives you flu-like symptoms. Some say that your liver can't process all of that fat at one time, to which I'd suggest eating coconut oil with something low in protein and fat, like carbs or fruit. Maybe eating a bit less of it.

 

Read this:

http://paleohacks.co...y#axzz2O69x1tqt



Recovering from Accutane-related hair loss.

(over a year and a half after stopping...)


#2650 sbowlchica

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Posted 20 March 2013 - 03:17 PM



Two weeks on the medium/low oxalate diet and I'm starting to get a sense of Jekyll-and-Hyde. Pre-and post-Accutane symptoms are coming together... I'm definitely feeling a sense of "detox", but it's a lot more bearable than last week.

I've been sleeping surprisingly well, but I've still been tired and brain foggy. My hair loss is back in full swing, and I've gotten a couple of tiny pimples on my chin (nothing too bothersome.) My fingertips are peeling and the dandruff is back. The sensitivity in my skin seems to be lessened, especially my eye and scalp itching. No change in my digestion so far. No more chills or joint pain, but I have to urinate a LOT. A couple days ago, I started getting the characteristic cloudy urine and black-speck stool. TMI, I know, but I figured you guys may (?) be interested in when the detox is really beginning to set in.

I found some interesting information:
The reason why taurine may have worked for me for so long is because it reduces absorption of oxalates. Perhaps I ate too many oxalates for it to deal with and that's why it stopped working. I'm on MSM now, which also contains sulfur, so I think that may be a good replacement. I didn't like always having to order taurine online, shipping and all that.

If you eat too much vitamin C, vitamin D, fish oils, or fructose, your body will convert it to oxalates. Maybe that's why my hair loss got worse once I started on vitamin D... and I took extra supplemental C and a multivitamin all throughout my Accutane course.

Vitamin A deficiency may be a cause of crystallization of oxalates. One of the theories going around is that we may be Vitamin A-deficient; plus, deficiency and excess symptoms are the same.

Oxalates are chelators, especially for iron, which I've recently wondered if I have enough of. It's a good thing to knock all possible chelators out of my diet.

If you don't absorb fat very well, calcium will bind with it instead of oxalate. So the oxalate is free to build up in your body... I'm making sure to get more calcium.

Antibiotics will exterminate Oxalobacter formigenes, which is the bacteria in your gut that degrades oxalates, leaving them free to build up.

So I'm really starting to get the feeling that this may be helpful to us. I don't know how, exactly, but I'm working on connecting the dots.



Recovering from Accutane-related hair loss.

(over a year and a half after stopping...)


#2651 MovingOn

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Posted 20 March 2013 - 04:08 PM

sbowlchica,

 

It seems like the low oxalate may be helping you, i'd be curious to see how it continues to go for you.  What supplements are you taking? and I'm curious for anyone else on here....has anyone tried just not taking ANY supplements to rid their body of crap? Not for the long-term obviously, but for the short-term.  I took fish oil for years post-accutane which did help my joints, butttt i think it honestly triggered the hair loss.  I'm 9 years out guys and all of a sudden i started having hair loss.  You would think it would happen a year or two later, not 9.  fucking weird. have not increased my dietary intake of vitamin A either.  The only thing that has changed is working a high stress job with little relaxing time....yes i know, i am currently looking...



#2652 sbowlchica

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Posted 20 March 2013 - 04:26 PM

sbowlchica,

 

It seems like the low oxalate may be helping you, i'd be curious to see how it continues to go for you.  What supplements are you taking? and I'm curious for anyone else on here....has anyone tried just not taking ANY supplements to rid their body of crap? Not for the long-term obviously, but for the short-term.  I took fish oil for years post-accutane which did help my joints, butttt i think it honestly triggered the hair loss.  I'm 9 years out guys and all of a sudden i started having hair loss.  You would think it would happen a year or two later, not 9.  fucking weird. have not increased my dietary intake of vitamin A either.  The only thing that has changed is working a high stress job with little relaxing time....yes i know, i am currently looking...

 

I intend to provide weekly updates for you guys so you can have someone who has tested the waters before diving in yourselves. There would be no point to haivng a lot of people doing low ox if it doesn't work. And I'm happy to be the human guinea pig. To be honest, I jumped into low ox without a lot of research and am happy that it's turning out well! (And it's weird that I've been craving dairy recently... calcium binds to oxalates.)

 

I'm taking a drugstore acidophilus probiotic (I also make sure to eat Greek yogurt every morning, and next time I go to the store, I'm going to look for kefir.) Also evening primrose oil (hormonal acne), MSM (liver detox, hair strengthening), prenatal (prescribed by the doc), and magnesium (helps absorption of calcium).

 

I haven't tried not taking anything-- I know there are a couple of guys on this forum who have successfully quit supplements and gone paleo-vegan, getting all of their nutrients from fruits and veggies. Connor McElvain, I think? Different things work for different people.



Recovering from Accutane-related hair loss.

(over a year and a half after stopping...)


#2653 MovingOn

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Posted 20 March 2013 - 05:03 PM

.


Edited by MovingOn, 26 June 2013 - 05:17 PM.


#2654 Livetoregret

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  • Interests:finished taking Roaccutane December 2010.
    Takin this drug has been the worst decision I have ever made and I have regretted it every day since.
    Doseage: 60:40 mg alternating daily for 11/12 months
    Sideffects:None till course was over.
    Now - SEVERE dry/brittle hair.
    HAIRLOSS - lost at least 70% and continues...acne came back in July, worse than I ever suffered from it. I now have back, chest, neck & cheeks that are covered.
    So now Im bone dry with no natural hydration with horrific acne. As a 31 YO woman with now destroyed skin & hair.
    My side effects include: Chronic Dry mouth
    Severe dry,tight,dehydrated, ashy,mottled,discolored (yellow & red),wrinkled,scarred poorly healing skin
    Facial fat atrophy - fatloss. Hollow eyes & cheeks
  • Joined: 22-October 12

Posted 20 March 2013 - 08:32 PM

I want more info on the intense long term/permanant dryness situation for post users. This is my largest problem and I believing causing the hair loss as well.

 

Anyone?



#2655 Monkeybeanmagic

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Posted 20 March 2013 - 11:40 PM

Usually sebum production returns to around pre-treatment levels or just slightly below. I think your skin might remain dry because you were on such an extremely high dose. 40-6mg for 11 months is an unheard of dose. That's much too high so this might be why you have experienced worse side effects than most other users. You should probably redirect your ire from Roche to the doctor who prescribed you such an unusually high dosage course.

#2656 bamdaze

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Posted 21 March 2013 - 04:08 AM

Tried peppermint oil, just inhaling it. Definitely improves my mood and mental clarity temporarily. As far as digestion goes, I drink black coffee and eat an apple every morning and the constipation is gone for the day. Not doing Epsom Salts anymore. Still feel sluggish on waking up, I guess that could be thyroid related - I'll have it checked by a radiologist soon. I have been found to have iodine deficiency (28 ug/g creatinine). 

 

I also try to eat less meat and more fruit.

 

Didn't have any reaction to Vitamin A, Cod Liver Oil, Colostrum etc. yet.

 

50-100mg Zinc + a pomegranate kickstarts my libido to unknown heights for a day or two

 

Haven't found anything that consistently helps with the dryness yet. I'll do a whole shave only once a week or so because I'll feel the skin inflammation for hours on end.

 

I notice my hair looks fuller and the dandruff is gone the day after I eat garlic. 

 

Tried MMS, didn't do anything for me.



#2657 MovingOn

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Posted 22 March 2013 - 01:10 PM

Okay so my hair stylist gave me nioxin shampoo and conditioner for thinning hair....anyone try this crap? seems to be making my scalp worse...i believe it may have harsh chemicals in it making me have sever folliculitis. FUCK.



#2658 MAJess

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Posted 22 March 2013 - 01:44 PM

Sdro have you spoke to a dermatologist maybe see if they will do kenalogg injections into the scalp we did that at the derm off i worked for ...for patients with hair loss...



#2659 09eric09

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Posted 22 March 2013 - 03:25 PM

Has anyone ever seen this show? In the states it is on in the mornings, one of the lower number channels 9-10am mountain time. Two days ago there was a show on substances that can cause damage that are found around us all the time, or something similar to that. I wrote a letter to Dr. Travis ... who is the head doctor and personally I feel the best chance to hear us out. These people are professionals and handle business in a quality manner. Sort of like Opera, except with a focus on medical issues. Often they help out like 1 to a few people at a time with big projects, and other times it's just informative. But if we can get enough people to write to them, they will listen and even if it doesn't become the sole focus for one of their shows, they may help. One of the four is a dermatologist and at his professional standing there is no way he hasn't heard of these abberant cases from Accutane. However, when you write to them please ensure you do not trash any of the medical professionals that you've seen in the past, because if you do they won't want to help. I know we have had some bad experiences with MDs because it gets personal when a doctor tells you that it's all in your head. Try to forgive them, forget the past, and move forward. I'm thinking if we can get about 20 people to write to them, we got a strong chance of getting a response. It won't lead to a cure overnight, but the exposure will undoubtedly help. We can compile ideas on what we will put in the letters to the show. If we are organized in this effort, I feel confident they will listen. Just go to thedoctorstv.com, and on the upper left side of the screen on the green bar it says "contact the show", scroll down to either send a letter or ask our doctors. 



#2660 ughhhhh

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Posted 22 March 2013 - 03:33 PM

Not to bring you down eric, but The Doctors actually recommended Accutane during a segment they did for a girl with Acne Conglobata (so a case where it is actually warranted). But all they did was mention pregnancy tests and skin dryness. I don't think they will now do a segment on how dangerous it is.






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