Repairing the long-term damage from Accutane

8,510 posts in this topic

Hey guys, I have been following this thread for a while. I’ve posted on here a few times about doing long term water fasting, which I have improved greatly from. I’m not quite back to 100%, but I don’t know if we ever will be. Anyway, I came across something on another forum that might be an answer to our situation. It is called ANKYLOSING SPONDYLITIS (AS). Basically this disease deals with inflammation of the spine and joints which can ultimately lead to fusion in the spine. Typically, the first symptoms of AS are frequent pain and stiffness in the lower back and tailbone, a very common problem for Accutane users. Over the course of months or years, the stiffness and pain can spread up the spine and into the neck. AS leads to a whole bunch of other problems such complications with the shoulders, hips, ribs, heels, small joints of the hands and feet, lungs (shortness of breath), and heart. Inflammation of the eye, or iritis, is very common. Symptoms often occur in one eye at a time, and they may include redness, pain, sensitivity to light (Accutane problem) and skewed vision. Indigo, I know you and others have complained about problems with the eyes. Oil girl, I believe I remember you alluding to foot pain. About 30% of people with the disease have problems with their feet, most commonly with the Achilles tendon and back of the heel. The jaw may also be affected. I know I have read Accutane users with jaw problems. Many people with AS also experience bowel inflammation, which may be associated with Crohn's Disease or ulcerative colitis (Accutane to the tee). Also, debilitating fatigue has been connected with AS. Read some of these quotes from people with this disease. It’s as bad as some Accutane users describe it.

"Some days it feels like wanting to blend into the sofa, so that none of my family members will notice that I am there and ask or expect me to do anything."

"I liken it to wearing a jacket containing 40 pound weights in each pocket, while slogging through a vat of molasses with suction cups glued to the bottom of your shoes."

"No amount of sleep will reduce the fatigue that makes me feel like I'm walking around all day with one of those lead aprons that they use at the dentist's office for x-ray protection. It feels like when you experienced a BAD case of the flu - pre AS."

This all makes sense to me because since I started fasting my back has been cracking like crazy causing my side effects from Accutane to lessen. The bad news is there is no known cure for this. I believe they classify it as an autoimmune disease. They do have medications and exercises that apparently help. Let me know what you guys think. It could at least be an answer, I’ll be it a shitty one. Here is the website I got the info from.

http://www.spondylitis.org/about/

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One more complication of AS. This condition can have a significant impact on a person's quality of life, and can cause urinary retention and/or incontinence, loss of bowel control, sexual dysfunction and problems causing pain and weakness of the legs. "AS patients do not suffer from erectile dysfunction, they rather have problems of satisfaction from the intercourse." I have heard many people who have sexual problems from Accutane describe it like this. A loss of satisfaction.

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But, How many of you can honestly say no aspect of your sexual functioning has been affected by accutane? I have always wondered what the prevalance of this is. Am I one of the few in this respect or is it common to varying degrees? Its pretty obviously an under-reported side effect in either case...

Obviously the disease affects sex when it affects energy for me, but it doesn't appear to have noticeably decreased my sex drive or enjoyment otherwise, FWIW. I might not have noticed though. I wasn't sexually active before taking Accutane.


Accutane - Brief low-dose course ~9 years ago for ~4 months. Liver monitored, no sides.
Symptoms: Gradual onset of symptoms, peaking ~5 years ago. Extreme IBS, lost ability to eat almost everything, unable to work for 4 years. IBD diagnosis might've been possible, but avoided doctors and the prescription meds route, going for diet and supplements instead. Thought it was regular IBS, didn't realize it was Accutane until already had avoided the IBD diagnosis. Decided going back to hell just to get the diagnosis wasn't worth it. Regained enough health to work full time around May-June 2013.
Regimen summary:
Eat only
1. true free range lean chicken breast (expensive)
2. Lean white-tail shrimp (moderately expensive)
3. Glutinous rice gruel (very cheap)
All ad libitum, minimum 150g shrimp/d.
Supplements:
1. Blue Ice CLO / Butter Oil blend
2. Udca ~1-3g /d
3. Source Naturals Essential enzymes 2x per meal
4. Symbiotics Colostrum ~1/8 scoop per meal
5. Cycled topical testosterone cream
6. Topical ACV, tea tree oil (morning) and benzoyle peroxide 10% (night)
Zeitgeibers:
1. Aim to nap every 3 hours for 20 minutes
2. Match light exposure to sunrise, sunset
3. Match meals to sun


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I think that standard process supplements could potentially really help us out as some people mentioned having success on them recently. They have great brain supplements, glandulars, etc. I was thinking of buying Okra Pepsin by SP but it doesn't contain hcl. Are you guys taking hcl, do you think it necessary or could I go with just the pepsins? I have a fairly good deal of constipation, going once a day even if I eat a lot of fiber and I get a loose stool every couple days.

Also, can anybody recommend a good Hyaluronic Acid? I think HA could be a huge help for me. I read an article saying that heavy weight HA is best so I bought some Baxyl but I am not feeling a difference from it in joints or skin so I question the absorbtion and will try some low weight pills which have helped my skin feel more normal in the past but I don't want to take those same ones for other reasons.

My approach right now is to take high amounts of what people like Bill Sardi have researched that we might be deficient in, plus additional minerals and shit we've discoverd here just as a kind of maintence. Find a good HA and drink a ton of water. Colon Cleanse with activated charcoal, bentonite clay, psyllium, aloe, and slippery elm ( 80 billion probiotic prebiotic), then liver cleanse, then fat cleanse. Work out frequently, oxygen therapy, and poly peptides for anti aging. Then I want to heal my organs with Standard Process Supplements and others.

This is probably very similar to what you guys are doing right now but I mention it because I wanted to say that this plan has helped me to categorize my mindset. I will always be someone who took chemo for acne and obtained negative results but what I can do is attempt to cleanse and repair.

Btw, I went to the doc who prescribed my Accutane for a skin checkup for the first time since Accutane the other day and he walked in with a few med students and I refused to shake his hand and then told him about my side effects to which he replied the expected bs but it was strange how I felt bad afterwards for ignoring his handshake but I just had to remind myself how irresponsible these people are. I have had bad thoughts about self harm so I feel you guys on that one and I would do it in such a way that it would probably get all the generics off the market semi instantly so I started convincing myself that it would be a heroic thing to save kids from taking it but then I stopped thinking that way for some reason, and I find it a better challenge to heal myself and maybe heal others.

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You should've said: "If you're not lying, then you take it." Then when he averred, turn to the others and say, "See, he's lying. One day, you too will destroy people's lives for money, because of institutional corruption and incompetence. I hope the knowledge poisons your happiness."


Accutane - Brief low-dose course ~9 years ago for ~4 months. Liver monitored, no sides.
Symptoms: Gradual onset of symptoms, peaking ~5 years ago. Extreme IBS, lost ability to eat almost everything, unable to work for 4 years. IBD diagnosis might've been possible, but avoided doctors and the prescription meds route, going for diet and supplements instead. Thought it was regular IBS, didn't realize it was Accutane until already had avoided the IBD diagnosis. Decided going back to hell just to get the diagnosis wasn't worth it. Regained enough health to work full time around May-June 2013.
Regimen summary:
Eat only
1. true free range lean chicken breast (expensive)
2. Lean white-tail shrimp (moderately expensive)
3. Glutinous rice gruel (very cheap)
All ad libitum, minimum 150g shrimp/d.
Supplements:
1. Blue Ice CLO / Butter Oil blend
2. Udca ~1-3g /d
3. Source Naturals Essential enzymes 2x per meal
4. Symbiotics Colostrum ~1/8 scoop per meal
5. Cycled topical testosterone cream
6. Topical ACV, tea tree oil (morning) and benzoyle peroxide 10% (night)
Zeitgeibers:
1. Aim to nap every 3 hours for 20 minutes
2. Match light exposure to sunrise, sunset
3. Match meals to sun


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I have always wondered what the prevalance of this is. Am I one of the few in this respect or is it common to varying degrees?

I think it's moderately common. I experienced significant reduction in sensation and drive.

Dr Kevin Pezzi has written about sexual side effects of accutane. He also claims some kind of cure with cycling finasteride. I'm looking into that right now but haven't actually done his program.

About the broth, you have my attention, but did you have an extreme fat sensitivity?

Not nearly as extreme as yours. I did go low fat for just under fifteen years.

I don't know if something changed internally as I hit age 30, or I trained myself to take in more fat.

Stock can be drained of fat. The minerals in animal-product derived gelatin is what is useful. Kind of like a second skin/stomach lining.

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<p>

Stock can be drained of fat. The minerals in animal-product derived gelatin is what is useful. Kind of like a second skin/stomach lining.
</p>

<div>&nbsp;</div>

<div>&nbsp;</div>

<div>Fascinating, how to drain it?</div>


Accutane - Brief low-dose course ~9 years ago for ~4 months. Liver monitored, no sides.
Symptoms: Gradual onset of symptoms, peaking ~5 years ago. Extreme IBS, lost ability to eat almost everything, unable to work for 4 years. IBD diagnosis might've been possible, but avoided doctors and the prescription meds route, going for diet and supplements instead. Thought it was regular IBS, didn't realize it was Accutane until already had avoided the IBD diagnosis. Decided going back to hell just to get the diagnosis wasn't worth it. Regained enough health to work full time around May-June 2013.
Regimen summary:
Eat only
1. true free range lean chicken breast (expensive)
2. Lean white-tail shrimp (moderately expensive)
3. Glutinous rice gruel (very cheap)
All ad libitum, minimum 150g shrimp/d.
Supplements:
1. Blue Ice CLO / Butter Oil blend
2. Udca ~1-3g /d
3. Source Naturals Essential enzymes 2x per meal
4. Symbiotics Colostrum ~1/8 scoop per meal
5. Cycled topical testosterone cream
6. Topical ACV, tea tree oil (morning) and benzoyle peroxide 10% (night)
Zeitgeibers:
1. Aim to nap every 3 hours for 20 minutes
2. Match light exposure to sunrise, sunset
3. Match meals to sun


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I stand by trying to promote health in my body, so will be staying away from cigarettes and anything that can point me in the other direction.

http://www.amazon.com/Never-Fear-Cancer-Again-Prevent/dp/075731550X/ref=cm_rdp_product

I might read the above book. The top-voted review says it could pretty much be used as a guideline to heal from anything..

You never know.

My 'Trick and Treat' book arrived in the post today.

Had a crap day at work, and my eyes stung constantly leading the current headache I have now.

However, I managed to resist birthday cakes which were in the office.

Go me!

There are too many theories surrounding this, and confusion leads to frustration in my eyes.

It's obvious that long-term stress can lead to hypothyroidism/adrenal problems, and it can harm the lining of your stomach.

These things can lead to leaky gut, which forms allergies, and you are also likely to have hypoglycemia.

Sounds like a lot to deal with, but when you look into it, you realise the treatment is the same for all.

- Eliminate the source of stress (not necessarily easy)

- Cut out gluten (which is normally always a problem for people with Hypothyroidism, because Hashimoto's is the most common form of this).

- Exercise more. Good for the body in general. Only do things that feel good for you though. No point pushing yourself at the gym when you don't want to be there.

- Rest. Sleep at 10-10:30 pm (need to make this a habit). Joe is right about circidian rhythm - It would be ideal to wake up naturally, without an alarm clock. It's also recommended that you lie in until 9am when possible (like at the weekends).

- Avoid stimulants, such as caffiene and sugar. Blood sugar balance is important when treating the above problems.

- Find out your allergies and avoid them.

- Rebuild the stomach, because thyroid hormones rely on healthy bacteria. This will improve when cutting out immune-response foods (such as gluten and dairy).

Probiotics should help, along with a good L-Glutamine powder.

- B12 and Vitamin D are known to be affected when you have thyroid issues. Supplement these.

That's the jist of it.

Whether Accutane is stored in the body is another matter, but by taking action on the above, you should at least improve.

I know I was never this tired when I was at college - and that was after Accutane.

I believe chronic stress/ bad diet has contributed towards my thyroid and adrenal problems.

Stef

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"I believe chronic stress/ bad diet has contributed towards my thyroid and adrenal problems."

Something like that could definitely be true. I had a collapse after working for 1.5 years at a high-hours big-city office job after graduating.


Accutane - Brief low-dose course ~9 years ago for ~4 months. Liver monitored, no sides.
Symptoms: Gradual onset of symptoms, peaking ~5 years ago. Extreme IBS, lost ability to eat almost everything, unable to work for 4 years. IBD diagnosis might've been possible, but avoided doctors and the prescription meds route, going for diet and supplements instead. Thought it was regular IBS, didn't realize it was Accutane until already had avoided the IBD diagnosis. Decided going back to hell just to get the diagnosis wasn't worth it. Regained enough health to work full time around May-June 2013.
Regimen summary:
Eat only
1. true free range lean chicken breast (expensive)
2. Lean white-tail shrimp (moderately expensive)
3. Glutinous rice gruel (very cheap)
All ad libitum, minimum 150g shrimp/d.
Supplements:
1. Blue Ice CLO / Butter Oil blend
2. Udca ~1-3g /d
3. Source Naturals Essential enzymes 2x per meal
4. Symbiotics Colostrum ~1/8 scoop per meal
5. Cycled topical testosterone cream
6. Topical ACV, tea tree oil (morning) and benzoyle peroxide 10% (night)
Zeitgeibers:
1. Aim to nap every 3 hours for 20 minutes
2. Match light exposure to sunrise, sunset
3. Match meals to sun


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I went to the doctors yesterday evening, to try and get the referral to have the telomere test, which I mentioned before. When the appointment was booked last week I was confident I might finally get some answers, but ended up thinking I'm just wasting my time. I'm agoraphobic, and even just going to the doctors is a huge effort. You are probably right Oli Girl, in that maybe there is no point, and as someone else has had their results come back as normal, plus this Fox0 stuff now mentioned, the cause could be anything, and answers are still a million miles off as far as I'm concerned.

Anyway, I still went, and as soon as I saw the doctor, he quizzed me about my weight (he did this when he last saw me 2 years ago and before), and took my blood pressure before I could even tell him why I was there. He wanted me to do more blood tests, and agreed for the telomere test (I handed over some printed info from the internet, which he read). He asked the reasons why I wanted the test done (so he could explain when he writes to the hospital why this test needs to be done). So I began telling him all my health issues since Roaccutane again before stopping me, saying "OK, I think that's enough...". My dad mentioned that I'm depressed, and the doctor asked me to describe how I was depressed. I resignedly just said that I felt sad, and struggling to hold back my emotions, told him that I didn't like my life. He asked if I wanted to see someone and I just said that I didn't.

I don't know when the telomere test will happen, but I'll let you guys know when its done.

There was an article in the Mail On Sunday following the suicide of Melissa Martin-Hughes:

http://www.dailymail.co.uk/health/article-2109711/DR-ELLIE-CANNON-Benefits-risks-drug-acne.html

In response to your long post Indigo, all I can say is I know exactly how you're feeling, I really do.

All I can see for myself is a life of pain, misery and despair. I know it probably isn't good to say these things, but I can't lie.

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"All I can see for myself is a life of pain, misery and despair. I know it probably isn't good to say these things, but I can't lie. "

Read Schopenhauer and Nietzsche for a week, then buy a live fish and boil it live. eat and savor the circle of pain.

plus cycle tongkat ali

dark energy has uses


Accutane - Brief low-dose course ~9 years ago for ~4 months. Liver monitored, no sides.
Symptoms: Gradual onset of symptoms, peaking ~5 years ago. Extreme IBS, lost ability to eat almost everything, unable to work for 4 years. IBD diagnosis might've been possible, but avoided doctors and the prescription meds route, going for diet and supplements instead. Thought it was regular IBS, didn't realize it was Accutane until already had avoided the IBD diagnosis. Decided going back to hell just to get the diagnosis wasn't worth it. Regained enough health to work full time around May-June 2013.
Regimen summary:
Eat only
1. true free range lean chicken breast (expensive)
2. Lean white-tail shrimp (moderately expensive)
3. Glutinous rice gruel (very cheap)
All ad libitum, minimum 150g shrimp/d.
Supplements:
1. Blue Ice CLO / Butter Oil blend
2. Udca ~1-3g /d
3. Source Naturals Essential enzymes 2x per meal
4. Symbiotics Colostrum ~1/8 scoop per meal
5. Cycled topical testosterone cream
6. Topical ACV, tea tree oil (morning) and benzoyle peroxide 10% (night)
Zeitgeibers:
1. Aim to nap every 3 hours for 20 minutes
2. Match light exposure to sunrise, sunset
3. Match meals to sun


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@abcabc - If this was ankylosing spondalytis at least some of the old-timer accutane sufferers should be showing obvious, identifiable signs by now.

According to the wikipedia page:

"There is no direct test to diagnose AS. A clinical examination, MRI and X-ray studies of the spine, which show characteristic spinal changes and sacroiliitis, and a simple genetic marker blood test are the major diagnostic tools. A drawback of X-ray diagnosis is the signs and symptoms of AS have usually been established as long as 8–10 years prior to X-ray-evident changes occurring on a plain film X-ray, which means a delay of as long as 10 years before adequate therapies can be introduced."

@maynerd - hah, those med students probably won't forget something that awkward any time soon. Hopefully they will look into this poison a little more than your doctor did before they prescribe it to their future patients. Way to go.

@Joseph & Lukez, Thanks for the replies.

Lukez, you mentioned Kevin Pezzi's method of cycling finasteride to reverse the sexual sides of accutane. Are you aware of anyone who tried this and had it work long-term? I have heard of this before, but don't remember seeing any accounts of someone trying it, much less having success with it... Except for Dr. Pezzi claiming it works.

Using finasteride is like playing with fire IMO. There's a ton of guys having horrible and persistent sexual sides/depression/fatigue after using finasteride, some after taking only a few pills. Maybe think about cycling it as a last-ditch effort? I know a few of those guys tried the same thing to reverse their condition and it didn't work long-term for any of them. One even said he was left substantially worse after trying it. Doesn't seem worth going from bad to potentially worse for the sake of a short-lived recovery.

Take care everyone.


Don't be part of the problem!
Report your side effects through the following links:
Rxisk
https://www.rxisk.or...ects/About.aspx
FDA
https://www.accessda...umer.reporting1
NHS
http://yellowcard.mhra.gov.uk/
Roche
http://www.roche.co....k/xxxcontactxxx


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Acutally there is a blood test for AS, it is called HLA-B27, however just b/c you have this gene doesn't always mean you will developed AS. If you think about though and read through Roche's side effects for Accutane, bone growth and spine problems are listed. So It could in some people possible cause this, esspecially if you carry the gene. Alot of suffer present and past have siatic problems all the time from Accutane.

http://www.spondylitis.org/about/as.aspx

Dubya- The RagFourm was re created, back in 2009 the Orginal forum had over 5,000 members and very detailed, some suffers lost over 2,000 of thier posts, polls, studies etc.... People are tired and didn't feel like reposting, however some of the OLD RAG FOURM is archived.

Also there is a thread on here about sexual dysfunction and a member posted certian tests etc that he finally got an answer too, he went to Mayo and all over...I'll find the thread and post it later for you guys.

Indigo- Hold in there man, I know it's hard. I remember almost 4yrs ago and thinking the world was ending and I was going to die. I agree with what the others have said to you.

Hope all is well with everyone!

Edited by oli girl

The secret of health for both mind & body

is not to mourn for the past, not to worry about the future, or not anticipate troubles, but to live the present moment wisely and earnestly.

The Buddha


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Fascinating, how to drain it?

After boiling your ingredients for a few hours, put it in the fridge. The fat congeals at the lower temperature while the liquid remains liquid.

Scrape the fat off with a spoon and drain the rest through cheesecloth and sieve.

Sometimes butcher's shops have good quality stock.

Lukez, you mentioned Kevin Pezzi's method of cycling finasteride to reverse the sexual sides of accutane. Are you aware of anyone who tried this and had it work long-term?

Alas, no. I'm aware of the problems with finasteride so I am hesitating greatly. None of those approaches are very comforting, even if they do make some sense to me.

I seem to be out of options and those classes of stronger drugs seem to be all that is left. I haven't decided yet. We'll see.

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Indigo/Lamarr

Thanks for the insights into Calcium D-Glucamine (I believe that was it) and not using Omega 3. Since taking Omega 3 I've also noticed new symptoms / increased joint pain in the legs.

I'm 22 years old, life was golden until accutane. Took only 2 weeks of the stuff and had personality changes / psych effects. After bastardizing myself as a "psychotic" friend for two weeks, I've lost my beautiful girlfriend and several close friends. Panick attacks and mental confusion still exist at random. Dryness, GI constipation is the least of my worries at this point. Chronic fatigue is the worst aspect. I even met with the co-invintor of accutane who resides in my hometown in Ohio, but most doctors have been useless. However, I have found one.

I was diagnosed with extreme adrenal exhaustion as a result of traumatic stress when taking accutane. Thus, I have experienced all symptoms of reactive hypoglycemia. After extensive blood tests- yes, Vitamin A is through the roof. I've dropped out of college for the last two years since taking accutane- remember my head filling up with heat around my brain upon the first pill. I believe was stress- and the stress it puts on the body is apparent.

I think many post-accutaners like myself struggle to rid ourselves of the ailments because we don't change our stress levels and are not willing to drastically change our diet. I tried anti-depressant this and that, reuptake and all that, and nothing helped. What did- a ketogenic diet. I'm one month ketogenic, and my accutane symptoms have dramatically decreased. I'll even say, I feel "comfortable" 4 days out of the week. However, I've also cut out all stress and currently live a sedentary life, as directed by the doctor I see.

Im embracing this diet/rest as a "healing season" for all the general stress accutane put on my system. I no longer have vision loss, and my blood sugar spikes and adrenal spike-induced panic attacks have subsided. Joint pain in my legs seems to be chilling out. Anxiety is still a battle- but GABA calm 3x is a good offensie approach. My ability to recall words and information is improving since accutane's retardative effects. I still feel like I'm functioning at 30%, but it's much better than where I was post-accutane. I was so worried someone was going to send me off to a loony hospital-- seriously an over night difference I'm still trying to rationalize and work through.

God bless you guys for this forum and determination to figure this stuff out. I'll check back / post back with any progress here. Btw, yes to dandelion and "adrenal relief" supplements. For me, glucose makes everything worse, proteins and amino acids help much. Also- no caffeine, alcohol, and take a few weeks away from any sexual activity to give tour adrenals a rest. That's not ideal, surely, but the easy way out doesn't lead to healing.

Cheers

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"However, I've also cut out all stress and currently live a sedentary life, as directed by the doctor I see."

This stress angle is huge. Not only did I break down after a high stress lifestyle for a year, but I could only recover after 1. adopting a similar sedentary lifestyle and 2. eliminating circadian stress by regularizing sleep.


Accutane - Brief low-dose course ~9 years ago for ~4 months. Liver monitored, no sides.
Symptoms: Gradual onset of symptoms, peaking ~5 years ago. Extreme IBS, lost ability to eat almost everything, unable to work for 4 years. IBD diagnosis might've been possible, but avoided doctors and the prescription meds route, going for diet and supplements instead. Thought it was regular IBS, didn't realize it was Accutane until already had avoided the IBD diagnosis. Decided going back to hell just to get the diagnosis wasn't worth it. Regained enough health to work full time around May-June 2013.
Regimen summary:
Eat only
1. true free range lean chicken breast (expensive)
2. Lean white-tail shrimp (moderately expensive)
3. Glutinous rice gruel (very cheap)
All ad libitum, minimum 150g shrimp/d.
Supplements:
1. Blue Ice CLO / Butter Oil blend
2. Udca ~1-3g /d
3. Source Naturals Essential enzymes 2x per meal
4. Symbiotics Colostrum ~1/8 scoop per meal
5. Cycled topical testosterone cream
6. Topical ACV, tea tree oil (morning) and benzoyle peroxide 10% (night)
Zeitgeibers:
1. Aim to nap every 3 hours for 20 minutes
2. Match light exposure to sunrise, sunset
3. Match meals to sun


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People can say what they want about Accutane.

I spent almost a decade treating Acne with topical treatments and oral anti-biotics and for the large part it was all in vain. I still had moderate to serve Acne in my early twenties, then along came a nine-month course of Accutane which totally cleared my skin. It wiped away a decade of shit and changed my life.

However, the Acne did come back after a year but it was a lot milder, and now I am currently on 20mg a day, which I plan to take for only 3 months to put my skin right. Yes … the side-effects are harsh and the drug is not entirely safe, but there’s nothing else out there like it when it comes to clearing Acne; it’s the closest thing to a cure.

Having said all this, I wish I never had Acne, totally fucked up my life.

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People can say what they want about Accutane.

I spent almost a decade treating Acne with topical treatments and oral anti-biotics and for the large part it was all in vain. I still had moderate to serve Acne in my early twenties, then along came a nine-month course of Accutane which totally cleared my skin. It wiped away a decade of shit and changed my life.

However, the Acne did come back after a year but it was a lot milder, and now I am currently on 20mg a day, which I plan to take for only 3 months to put my skin right. Yes … the side-effects are harsh and the drug is not entirely safe, but there’s nothing else out there like it when it comes to clearing Acne; it’s the closest thing to a cure.

Having said all this, I wish I never had Acne, totally fucked up my life.

Yes, People can say what they want about Accutane. If you noticed the title is for Long Term Suffers From Accutane, NOT sucess stories! By the way you never know what course will hit you 1st, 2nd or possibly the 3rd, but when it does you'll know....


The secret of health for both mind & body

is not to mourn for the past, not to worry about the future, or not anticipate troubles, but to live the present moment wisely and earnestly.

The Buddha


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Hi guys, just been reading through these posts and after suffering for 4.5 years from accutane side effects I really feel for all you as many of you seem to have had a similar experience to me.

My story - Took Roaccutane (70mg per day) in 2007 for seven weeks. Suffered from severe deperession, so ceased taking the drug immediately. A few days after stopping the drug my libido vanished - complete loss of nocturnal/morning and spontaneous erections, along with a change in the shape and feel of my flaccid penis. Pretty fucking horrible.

After about 6 months of CBT, hypnotherapy (and some low dose prozac that I binned after a couple of months through fear of it worsening my ED problems), I managed to get the depression under control and could return to work. Although I suffered from dips in mood, things gradually got better over time to a point where my mental state was more or less back to normal.

However, my libido problems did not improve at all during this time. There seemed to be no clear hormonal explanation - I had a number of hormone tests and all my hormones were 'in range.'

For the first couple of years I tried so many different herbs/vitamins and minerals to try and boost my libido. Some of these would work for a day or so and then my body would adjust to them and they effects would dimish. I got most of my ideas on how to potentially tackle this through the propeciahelp.com website - those guys have an almost identical side effect profile to us. Two of the most notable treatments I have used for sexual dysfunction are a device called the Blakoe Ring and Vitamin D - but unfortunately both have led to undesirable side effects...

Google the blakoe ring - it sounds literally bonkers, but it worked for me. The problem was it sent my Testosterone through the roof and I started to develop mild gyno as my T converted to E, so I had to stop using this. Herbal AIs (aromotise inhibitors) did nothing to stop this process and im not willing to take pharmaceutical AIs. I got blood tests done at the time and my estrogen had increased considerably - its now gone back to normal thankfully, but the gyno has remained. The ring is made of zinc and copper rods - I think zinc and copper are pretty useful supplements to take, but it seems the ring was too much for me.

Vitamin D is another complex supplement for me - blood tests have shown I am very low (which seems to be a common link between us all). Supplementing relatively low dose Vit D helped sex drive slightly for around a month, but about a month into taking Vit D I suffered from horrific brain fog that I have been unable to shake to this day.I dont want to scare ppl off taking Vit D - we are all different and it seems to help some people but I can only speak honestly about my experiences and it seems to have somehow worsened my mental state. I have now been suffering from severe brain fog for nearly 1.5 years, despite stopping the vitamin d and it's so bad I have had to be signed off work. The brain fog is entirely different to the original depression i suffered - i have real trouble speaking, my memory is awful and I suffer terrible anxiety when I am with people.

On to a more positive note, the one thing i have found that helps, with no side effects, is diet. You guys seem to be pretty clued up on diet. I started a strict paleo diet about 1 year ago to try and combat the brain fog - about 2/3 wks in I noticed grease started to be deposited on my face for the first time since taking roaccutane, and ever so slightly my libido was returning. This opened my eyes to the role diet could be playing in all this. After reading shedloads about diet and the benefit of raw food I shifted to a raw vegan diet (primarily in an attempt to treat my brain fog) and have subsequently seen signs of further increased libido. Diet has got me to probably 30%-40% of my previous sexual potentcy - that might seem small progress but for anyone suffering severly from all of this you will know how important it is to cling on to any progress at all.

I now see diet as the building block for my treatment - after 4.5 years of this shit I've given up on a complete recovery but If I can get to 75% of where I was pre-tane sexually and mentally i'll be over the fucking moon. Unfortunately my brain fog is still terrible - if anyone has had any success in treating this I would love to know.

I've become more interested in the diet/auto-immune angle in treating these side effects due to the improvements I've seen from my diet and I am currently seeing an immunologist in London. He has run a battery of vitamin/mineral/hormonal and neurotransmitter tests on me and has found that I have high histamine and low Diamine Oxidase (DAO is he enzyme responsible for getting rid of histamine out of the body). He belives roaccutane caused this imbalance and this is the root cause of all my brain fog/sexaul issues - high histamine can certanly cause brain fog, but I am not so sure it can cause complete annihalition of the sexual functioning....he has put me on some treatment so I will see how that goes - will keep you updated but no progress so far.

My strategy for the future is to focus on raw foods, excercise, meditation and selective supplementation backed up by blood tests. However, I don't really trust supplements anymore - most are such poor quality and to this date after 4.5 years I am yet to find one that consistently helps me.

I am determined to get to a point where i can at least function again, I will not give up until Ive got there. I think it is vitally important we come together to exchange ideas on this - congrats on initiating this thread chaps...

Sorry for the massive post - i'll keep tabs on this thread from now on..

Take care

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Welcome to the new guy..

19 people now follow this thread... That's quite a lot!

Keep getting new faces in here lately.

Haven't been reading much lately, but I'm still finding a lot of good information in the thyroid book.

Makes this thing seem a lot easier, and explains a lot.

I really need to cut out stress..

Still loving Badminton and it always get's my anger out, and makes me feel good after.

But when I'm at work, or arguing with my girlfriend, it's hard not to let my mood slip into 'fuck.fuck.shit.fuck.'

If you have hypothyroidism, it's likely that you have a lack of dopamine/serotonin, because thyroid affects neurotransmitters.

This would explain our paranoia/anxiety that seems uncontrollable, and abnormal.

It also would explain why we don't 'feel' much, emotional wise, when other people are concerned.

For example, when my Grandad died (around September last year) I didn't really cry, or feel anything.

I hate that.

I'm sure I mentioned it at the time.

Of course I love him and wish he was back, but things like that just don't affect me.

It's like I'm dead inside and it's horrible.

But yeah..

I think it'd be interesting to see how your guys thyroid/adrenals were functioning.

Bloodtests are shit...

Even when they do work, they probably won't tell you when something is wrong.

Worth getting, if you're in the UK, because they're free.

But ask for the paperwork, and see where you are in the range.

They won't tell you anything is wrong unless you're out of their (generous) range.

It seems this drug is just a shock to the system.

I find it odd that I had a sex drive for a year and half after this drug, before it collapsed.

Thryoid/adrenals are key in libido.

I know both of mine aren't working well/are exhausted, so that's the focus point for me.

Peace my amigos.

Tree dude, where are you from in the UK?

I'm still hoping I can meet up with another 'Accutaner' in real life.

Just to feel less alone in this battle.

Stef

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tree vit d should be taken in morning only. when were you taking it?


Accutane - Brief low-dose course ~9 years ago for ~4 months. Liver monitored, no sides.
Symptoms: Gradual onset of symptoms, peaking ~5 years ago. Extreme IBS, lost ability to eat almost everything, unable to work for 4 years. IBD diagnosis might've been possible, but avoided doctors and the prescription meds route, going for diet and supplements instead. Thought it was regular IBS, didn't realize it was Accutane until already had avoided the IBD diagnosis. Decided going back to hell just to get the diagnosis wasn't worth it. Regained enough health to work full time around May-June 2013.
Regimen summary:
Eat only
1. true free range lean chicken breast (expensive)
2. Lean white-tail shrimp (moderately expensive)
3. Glutinous rice gruel (very cheap)
All ad libitum, minimum 150g shrimp/d.
Supplements:
1. Blue Ice CLO / Butter Oil blend
2. Udca ~1-3g /d
3. Source Naturals Essential enzymes 2x per meal
4. Symbiotics Colostrum ~1/8 scoop per meal
5. Cycled topical testosterone cream
6. Topical ACV, tea tree oil (morning) and benzoyle peroxide 10% (night)
Zeitgeibers:
1. Aim to nap every 3 hours for 20 minutes
2. Match light exposure to sunrise, sunset
3. Match meals to sun


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@Oli girl -

I'm aware that bone growth and spine problems are associated with accutane use, but would be hesitant to blame those or any other side effects on ankylosing spondalytis being caused by accutane. My point is that AFAIK no accutane sufferer has been diagnosed with that condition, which according to the wikipedia article, should show obvious clinical signs after 10 years. I mean, at least a few of us who have been suffering for over ten years should have had a diagnosis by now if this was true.

The guy you mentioned going to the Mayo clinic is same guy I mentioned who said he had some success with HRT surprised.gif Said he's doing better in his last post.

That fkn sucks what happened with the old RagForum, we would probably be much better of at the moment if it was still around, never got to see it except for a few of those archived pages. I don't mean to put anyone down, but the new ragforum seems pretty lifeless, and all the ads make it feel less welcoming, plus the same thing is liable to happen if the host goes under unless there are people keeping a backup of the site now. It would be unimaginable for everyone to have to re-type years worth of posts. Still have to say new ragforum seems like a better option than everyone posting on acne.org. Every post would be more organized/accessible there, plus fewer of these idiots who have their heads buried up their asses would show up to crap on us for hating on accutane.

BTW- It's admirable that you've devoted so much time to helping other's who have been screwed-over by accutane. Over a thousand posts worth. Thanks.

@Tree1-

I'm in the same boat as you man, hundreds of blood tests and pretty much everything in range with a few exceptions, still have sexual/mental problems despite that.

Had lowish testosterone on the first few tests after this $hit started. Got tested last year and T, Free T, DHT, and E2 were perfect, Adiol-G was near bottom of the range though, but I had felt worse then than in 2002 when my T and Free T were much lower. My thyroid tests always come back fine / Cortisol and DHEA-S always a little high / prolactin used to be high but has dropped in the past few years / FSH always low but LH always mid-range/ 24hr urinary steroid profile was all out of whack, but I have always been sketchy about the validity of that test. Various forms of TRT haven't helped at all with the exception of a slight boost in mood that only lasted for a couple weeks after beginning androderm, and a few strange returns to near-normalcy sexually and emotionally that lasted for a few hours each after using 3-4 androderm patches at once. Clomid didn't make me feel any different and I swear tamoxifen has left me a little worse-off after taking it for around a month 2 years ago. Was on bromocriptine for about 4-5 years, which seemed to make a noticeable difference for some reason even though prolactin was not super high, maybe it's becuase it is a dopamine agonist? Tried bromocriptine again a couple years ago and didn't seem to have the same effect as before. Sucks that you got gyno from boosting T, maybe andractim could help?

@Indigo-

It is difficult to say which is worse...

The sexual sides are embarrasing, emasculating, humiliating, and infuriating, along with the worry that I will not be able to have children... I finally found someone and was pretty much forced into explaining everthing to her a few days after we met. That was about 2 1/2 years ago. After enduring: my suicidal rants, a few long and probably inappropriate explanations about how it's impossible for me to feel real love, lust, and connection like any other man would, explosive rage over what this chemo drug did to me, telling her she would be better if with someone else, and a lot of other $hit that comes along with all this, she actually asked me if I wanted to marry her and I agreed.

Living like a hermit for almost a decade just to avoid a little embarrasment sucked. All I'm saying is that it seems like you have a good girl right now. Don't screw things up unless she gives you a good reason to.

The emotional blunting makes you feel non-human, unmotivated, anti-social at times, and seems almost impossible for others to understand as something different than run-of-the-mill depression. My grandfather passed away about a year and a half after I crashed and I was also barely able to feel any grief at that time. I couldn't cry although I was very close with him. It was an un-real experience. It took time but the emotions returned somewhat and have come and gone to varying degrees (both highs and lows lasting a few months to a couple years) over the past 13 years for me, and have never gone back to that "blank" state they were in after I crashed. I'm not sure if you have those "fluctuations" in emotional intensity too, but don't assume it can't possibly get any better, even after a few years.

And... What is really crazy is that I just read one of your other posts and wanted to say I had the "exact" same experience. I was checking my junk out a couple weeks after the libido disappeared and found a "small lumpy mass", and freaked out that it might be testicular cancer since I basically still felt like I was in the process of dying at the time. I'll probably never know whether I once had epididymitis or not since I was too scared back then to see a doctor. It could have developed when I crashed or that could have been the first time the lump was noticed (didn't pay much attention to my balls before that, they just hang there after all). Had tests done to see what it was a couple years ago after a doctor agreed that it was a little strange. Ultrasound found nothing unusual except for a small benign cyst (a lot of guys have them). What was odd was that the ultrasound report said something like "29 y.o. male with epididymitis"? Maybe it said that because epididymitis is what the doctor was looking for? In any case it hasn't gotten any bigger in 13 years, was never painful, had another test that would have shown an infection in my reproductive tract come back negative, and judging by blood tests my nuts are working ok even though I don't feel like they are.

Wondered if you felt any pain along with the infection?

Edited by Dubya_B

Don't be part of the problem!
Report your side effects through the following links:
Rxisk
https://www.rxisk.or...ects/About.aspx
FDA
https://www.accessda...umer.reporting1
NHS
http://yellowcard.mhra.gov.uk/
Roche
http://www.roche.co....k/xxxcontactxxx


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Stefan - Im in London, happy to discuss any of this anytime

Joseph - I wasn't aware vit d should only be taken in the morning - what is the rationale/evidence for this? I reckon 99% of the time I took it in the morning anyway, as I always take my supps in the morning when waking.

Dubya - cheers for the pointer on andractim, however tbh I'm very relucatant to take any more pharmaceutical drugs. My Gyno isnt that severe to look at so Im just going to forget about it for the time being, Ive been checked over by an endrinocologist who said everything is more or less ok with the gyno. I'm waiting on another blood test however just to make sure my estrogen is back down for sure. I forgot to mention in my above post Ive been suffering from pretty heavy hair loss as well for the last 2years - this has definently been exacerbated by my T boosting regime.

With regards to the diet changes - I must emphasise for me I only started to see improvement if I very strictly adhered to the diet plans. When i first tried the paleo diet a few years back I still had the odd bit of rice/some gluten free cookies a few times a week (what a dickhead!), and I didnt see much benefit at all. After reading the 'primal blueprint' I gave it another shot and it was only when i existed off meat, veggies and fruit that I saw some sexual improvement.

The same goes for the 'raw' diet - the I did it 100% for 6 weeks before xmas (which is fucking tough) and a couple of times I woke woth morning erections for the first time in 4.5 years. The effects come and go tbh - but the more cooked foods i introduce I have a feeling it limits the effects of the diet - it is very hard to track progess exactly but I do feel the diet has moved me on in all this. My auto immune specialist has now put me on a high raw 80% alkaline diet - basically 60-80% of my diet is from raw food the rest from some cooked vegan food and the odd bit of fish/meat, lots of green juice/smoothies. He has advised me to centre my diet around leafy green veg, eating twice as much veg than fruit.

The high raw (50-80%) diet seems more realistic to stick to long term, Im a skinny chap and going 100% raw makes it very difficult to get all the required calories to enable me to excercise. For me, excecise is very important. The jury is still out for me on whether it can directly help with roaccutane sides, but I find simply doing excercise very theraputic and helps me take out my anger over all of this. It's important to find hobbies/interests throughout all of this to keep you sane, excercise defintently helps me. My social life used to be incredible, but I barely go out now because m whole social life was centred around boozing, thats off the agenda for a while. But in the grand scheme of things, I can deal with not going out and i know I feel better when sitcking with my diet.

So my current regime is:

- High raw diet, juices/smoothies

- 30mg Zinc/2mg Copper per day (for sex drive). Very important to get good quality zinc with copper in it, if not copper will be depleted. - x3 Spirulina tabs (my b12 is a little low)

- As much excecise as I can do

- Meditation

Cheers guys

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Joseph - I wasn't aware vit d should only be taken in the morning - what is the rationale/evidence for this? I reckon 99% of the time I took it in the morning anyway, as I always take my supps in the morning when waking.

Seth Roberts found it resets your Circadian. Take it in the morning and it won't shift you late or early. Metabolism will peak around noon.

It's like a big dose of sunlight. Upstream from taking melatonin. Makes you awake during day, sleepy at night.

By the way, I tried canned tuna last Sunday and it flattened me until today. Too much fat, I guess. 2-3%. Only other thing it had in it was water.

But yeah, my diet works, I'm back to normal now.

He said as he burned his tongue on the steamed chicken breast.


Accutane - Brief low-dose course ~9 years ago for ~4 months. Liver monitored, no sides.
Symptoms: Gradual onset of symptoms, peaking ~5 years ago. Extreme IBS, lost ability to eat almost everything, unable to work for 4 years. IBD diagnosis might've been possible, but avoided doctors and the prescription meds route, going for diet and supplements instead. Thought it was regular IBS, didn't realize it was Accutane until already had avoided the IBD diagnosis. Decided going back to hell just to get the diagnosis wasn't worth it. Regained enough health to work full time around May-June 2013.
Regimen summary:
Eat only
1. true free range lean chicken breast (expensive)
2. Lean white-tail shrimp (moderately expensive)
3. Glutinous rice gruel (very cheap)
All ad libitum, minimum 150g shrimp/d.
Supplements:
1. Blue Ice CLO / Butter Oil blend
2. Udca ~1-3g /d
3. Source Naturals Essential enzymes 2x per meal
4. Symbiotics Colostrum ~1/8 scoop per meal
5. Cycled topical testosterone cream
6. Topical ACV, tea tree oil (morning) and benzoyle peroxide 10% (night)
Zeitgeibers:
1. Aim to nap every 3 hours for 20 minutes
2. Match light exposure to sunrise, sunset
3. Match meals to sun


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