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Member Since 29 Aug 2011
Offline Last Active Jul 11 2014 11:03 AM

#3356696 Repairing the long-term damage from Accutane

Posted by sbowlchica on 10 June 2013 - 11:58 AM

Everything is getting better. My hair loss is getting close to pre-Accutane levels. My skin is pretty oily again and more even than ever before.


My body didn't like it when I quit primrose oil at first. Hormonal acne came back with a vengeance, made worse by the fact that I started drinking detox tea and, well, it needed to get all the toxins out. Two weeks of awfulness. Now it's a lot better, better than it was before Accutane. (I have at least two tea bags a day, and I do eat the herbs for maximum potency. I use Triple Leaf.) I have a little bit of bumps because I ate like crap last weekend (my friends were in town and I went for sugar, carbs, and dare I say it-- alcohol!) but I'm fine. And now I know that even one glass of wine makes my stomach hate me. Peachy.


I've been on hyaluronic acid/glucosamine for about a month now. My joints don't ache and my fine lines are disappearing! I take it twice a day, each with 32 oz water. This is important!! It needs a ton of water to work!


My doctor put me on Metformin. I have to keep eating or else I get tired, but now I don't have as much of a problem with carbs. I've been on it about 4 days and today, a lot less shedding than normal! Yay!


I pour a mixture of half apple cider vinegar/half water on dry hair, rinse it, then a final rinse in black tea. I only shampoo my bangs. No more scalp dandruff and excessive shedding. My hair likes a lower pH.


Topically, I use my own "dupe" SK-ii. 1/3 sake, 1/3 aloe vera gel, 1/3 honey. And my skin is so even toned and moisturized!


Still low oxalate. Still avoiding wheat and sugars. Most of what I eat is meat. Still having digestive issues-- trying to eat less.

#3351696 Repairing the long-term damage from Accutane

Posted by sbowlchica on 24 May 2013 - 06:57 PM

Today I had to blot my face several times. My face hasn't been this oily in... wow, I don't even know!


Is it the glucosamine/hyaluronic acid kicking in? Is it the Triple Leaf Detox tea I started last week? Is it the aloe vera gel I've been putting on my face recently?


Whatever it is, I'm doing something right!

#3351002 Repairing the long-term damage from Accutane

Posted by sbowlchica on 22 May 2013 - 09:38 AM

Thanks for all your help, Auguriesofinnocence! Go forth out into the world and be merry. We'll still be here if you need us.

#3345056 Negative Accutane Experiences Survey

Posted by sbowlchica on 02 May 2013 - 12:09 PM

Negative Accutane Experiences Survey:

Name/username: Erinne

Gender: F

Age: 21

How long has it been since you took Accutane? almost two years

Describe your skin before Accutane: Moderate hormonal acne concentrated on the jawline.

Describe your health before Accutane: Besides acne, I had no health problems whatsoever. I hardly ever got sick.

Did either of your parents take Accutane or antibiotics? My mom took two rounds of Accutane and lots of antibiotics before I was born.

Before Accutane, did you take antibiotics? Yes. Every -cycline in the book. For years.

Did you use retinoids? Yes, topical retiniods like Atralin and Retin-A...

What other medications or supplements did you take before Accutane? None besides a multivitamin

What was your diet like before Accutane? Describe a typical day's meals. I was a "macaroni-and-cheese" vegetarian, eating lots of grains and dairy. I avoided fats and oils.

Did you drink enough water? I was about average. Could have had more.

Did you drink alcohol? On average, how much per week? No.

Did you smoke or use drugs? How often? No.

What was your lifestyle like? Were you active? Fairly sedentary... I didn't get a lot of exercise.

What was your stress level? High

Height/weight during treatment: 5'3'', 100 lb.

Age during treatment: 19

Dosage: 80 mg/day

Length of treatment: Three months

Reason for stopping treatment: Elevated liver levels

Did you take any medications/supplements during Accutane? Vitamin C, Vitamin E, multi

Did you take a multivitamin during Accutane? yes

If so, did it contain Vitamin A? What kind? Yes, 50% vitamin A, 25% from beta carotene

Did Accutane clear up your acne? For how long? Nope. Not at all.

When did you first begin to notice adverse effects? About a week in I started noticing hair shedding, dry skin, and bleeding lips

When did these effects become serious? Almost instantly

Has anything shown up abnormal on blood tests? If so, what? Elevated DHEA levels (442)

Mark all of the side effects you have experienced.

Put a lowercase x in the box if the side effect has gone away and a capital X if you still have the side effect.

Put two X's if you feel like the side effect has significantly impacted your life.

(Feel free to explain the severity and specifics of the side effects.)

[X] Sensitive skin

[x] Irritated skin

[X] Increased photosensitivity

[X] Dry skin

[X] Peeling fingertips

[ ] Chapped lips

[ ] Bleeding lips

[ ] Sebhorreic dermatitis

[ ] Increased acne

[X] Itching

[ ] Keloids

[ ] Slow healing

[ ] Jaundice

[X] Premature aging

[x] Uneven skin tone

[ ] Facial fat atrophy

[XX] Hair loss (it's a lot better than it used to be, but it's still happening)

[x] Dry hair

[x] Dull hair

[ ] Decreased rate of hair growth

[x] Change in hair texture

[x] Itchy scalp

[x] Dandruff

[x] Scalp buildup

[ ] Increased body hair

[ ] Decreased body hair

[X] Dry eyes

[XX] Irritated eyes (I can't use contacts. Sometimes the stinging gets so bad that I start crying)

[X] Blurred vision

[ ] Poor night vision

[X] Light sensitivity

[ ] Loss of libido

[ ] Erectile dysfunction


[ ] Infertility

[ ] Irregular periods

[ ] Heavy periods

[ ] Cramps

[ ] Birth defects

[x] Yeast infections

[x] Social anxiety

[x] Depression

[x] Suicidal ideation

[x] Anxiety

[x] Aggression

[XX] Mood swings

[XX] Insomnia

[X] Headaches

[XX] Brain fog (I have problems keeping up with things, especially arguments)

[X] Vertigo

[XX] Memory problems (Sometimes I'll forget where I'm going or certain places)

[X] Fatigue

[ ] Nosebleeds

[x] Dry mouth

[X] Dry throat

[ ] Tinnitus

[ ] Hearing problems

[ ] Stomach pain

[X] Poor digestion

[ ] IBS

[ ] Crohn's

[ ] Ulcerative colitis

[X] Food intolerances

[X] Leaky gut

[ ] Candida

[X] Nausea

[X] Insulin resistance

[ ] Diabetes

[ ] Liver damage

[X] Kidney damage

[XX] Dehydration (I have to drink a LOT of water or else I get dizzy, tired, brain fog, and headaches)

[XX] Overactive bladder

[ ] Diarrhea

[ ] Constipation

[ ] Excessive sweating

[ ] Stunted growth

[ ] Osteoporosis

[ ] Aching joints

[X] Stiff joints

[ ] Other joint problems

[ ] Muscle aches

[ ] Weight loss

[ ] Chills

[X] Allergic reactions

[X] Increased immune response

[ ] Decreased immune response

[ ] Heart palpitations

[ ] Hypothyroidism

[ ] Hyperthyroidism

[ ] Low testosterone

[X] Low estrogen

[ ] Low progesterone

[ ] Anemia

[ ] Other

Which medications/supplements have helped you post-Accutane? Please explain how long you have taken them and what the beneficial effects are.
Prenatal vitamin-- over a year, has helped hair growth.
Evening primrose oil-- four months, has helped to moisturize skin and hair and stop my hormonal acne.

Which medications/supplements have made your condition worse? Please explain how long you took them and what the harmful effects were.
Biotin-- two months, gave me cystic acne, had no effect on hair
Ginkgo biloba-- one month, raised my acetylcholine levels and turned me into a hypersensitive, anxious, aggressive monster
Milk thistle-- one month, no physical changes, but raised oxalates
Magnesium, Melatonin, Vitamin E, MSM all increase DHEA, which is one of my problems. I didn't connect these supplements to my insomnia and brain fog until later.
I was only on spiro for a week, but if I kept on it, I'm sure it could have led to some problems, since it's an anti-androgen (halts oil production) and diuretic (leads to dehydration and brain fog.)

Which medications/supplements have had no effect? Please explain the dosage and exactly how you took them.
Probiotic-- about a year on and off, it's better to just have some greek yogurt or kefir since they're more bioavailable. I noticed no difference.
Fish oil, zinc, amino acid, artichoke, vitamin C did nothing.
Taurine-- used to lessen my hair loss but stopped. Research indicates it may have led to a hormonal imbalance.

How has your diet changed since Accutane? Describe what worked and what didn't.
I eat meat now and have gone low oxalate in an attempt to lower my DHEA levels and prevent further kidney damage. Oxalates are chelators that impair the body's metabolism and ability to detox, so cutting them out increases the amount of nutrients I get. I feel a lot better now. I try to make most of what I eat meat, vegetables, and dairy.

Have you made any significant lifestyle changes since Accutane? If so, describe them.
I drink a lot more water.
To decrease shedding, I wash my hair in black tea. I will pour a mix of tea and a tiny bit of apple cider vinegar on my hair, let it sit for a couple minutes, and rinse it out. The caffeine in the tea inhibits DHT and stimulates hair growth. The apple cider vinegar helps to balance the pH. Your hair needs a pH of 5.5 to be at optimum health. Water is 7, and hard water can be closer to 8! This has helped me a lot.
I'll put diluted apple cider vinegar on my scalp to get rid of dandruff.

Do you feel like Accutane has impacted your life? If so, how?
The Accutane fiasco has made me much more aware of exactly how anything I put into my body can affect me. Not just drugs, but things I didn't give a second thought about, such as caffeine, sugars, and oxalates. I thought since I had a fast metabolism and didn't gain any weight, I could eat whatever I wanted with no consequences. Not so. The dermatologist said that whatever I ate didn't affect my acne, but that was wrong. I saved myself before it was too late-- had I continued down that route, I would have gotten kidney stones and possibly worse insulin resistance.

What would you tell anyone who is considering Accutane?
Don't. There are much better ways to clear up your acne. Try the natural route first. Evening primrose oil did for me what Accutane couldn't do-- balance my hormones. There's always an underlying cause to acne; it's better to find it and correct it naturally than poison and damage the acne.


#3344388 Repairing the long-term damage from Accutane

Posted by sbowlchica on 30 April 2013 - 08:23 AM

Every time I see Accutane mentioned online, I have to jump in and warn them. I feel like one of those super religious people that goes door to door trying to save people's souls. And, of course, the people treat me like one of them and slam the door in my face.

#3343530 Repairing the long-term damage from Accutane

Posted by sbowlchica on 26 April 2013 - 12:39 PM

He's a jerk, but he knows his stuff.

#3343120 Repairing the long-term damage from Accutane

Posted by sbowlchica on 24 April 2013 - 07:11 PM

Anyone have anymore advice for hair loss? mine is hitting me on one side all of a sudden.  head is super itchy, it's been better with gluten-free but it's still there. i don't really want to give it time because i think it'll get worse. I really don't mind getting a wig someday as wigs are epicly awesome these days, but i'd rather have my own hair, ya know? kinda effects my womanhood a bit....i dont want to take harmful meds.   only things that have helped are topical antifungals...but the hair loss is still in effect. rogaine im sure was irritating my scalp....


What shampoo are you using? Look at the ingredients. If it says anything about sulfate, then it may be too harsh for your hair and may be irritating your scalp. If so, dilute it with honey to make it more gentle. I like to dilute it with water and honey and put it in a pump bottle.


Also, I do tea rinses. Tea has caffeine, which stimulates growth and is a natural DHT inhibitor. I take 32 oz black tea (or I'll mix the black tea with herbal tea) and 1/4 to 1/2 cup of apple cider vinegar (to balance pH and get rid of dandruff and itching.) I'll pour it on my dry hair and let it sit for an hour (usually I tie a grocery bag around my head and go about my business.) If your scalp is drier, you might want to use less ACV, but mine is super oily.


After an hour, I'll rinse it out and shampoo as always, then I'll pour water with a little bit of apple cider vinegar in it as a final rinse. Chances are, you've got hard water, which is hard on your scalp and hair. ACV helps to even out the pH to your hair's optimum level (5.5), which makes your hair healthier.


Don't dye it, blow-dry it, heat-style it, or comb it while wet. Detangle from the ends first, grabbing onto the hair shaft so it won't pull the scalp. Sleep with it in braids so you won't wake up with tangles. I also have a satin sleep cap. All these little things have added up to less hair loss.

#3343046 Repairing the long-term damage from Accutane

Posted by sbowlchica on 24 April 2013 - 02:16 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. 

#3342433 Repairing the long-term damage from Accutane

Posted by sbowlchica on 22 April 2013 - 12:21 PM

Seriously, guys, this is what Roche wants. United we stand, divided we fall. Even our closest friends and family have said that we're overdramatizing, that we're hypochondriacs, that this is all in our heads. This group is all we have, so we need to stick together.

It's okay to think that someone else's supplement/regimen/medicine is BS. That's fine. But if you're going to point it out, do it with facts, not opinions. Post sources: studies, books, something legitimate that backs up your claims. If you think something that someone is doing is going to harm them, let them know why.

In the same vein, just because someone makes a treatment mistake doesn't mean they're stupid/evil/foolish, and does NOT give you the license to provoke them. We're a community, and fighting among ourselves will get us nowhere.

Also, we need to accept that different things work for different people. Just because something didn't work for you doesn't mean it won't work for someone else. Accutane has done different things to all of us; we don't all have the exact same side effects and blood test results. For most of us, Accutane screwed up a whole bunch of things, and we've got a lot of health issues to skate around.

When it comes to cures, I'd say diet is the easiest thing to try, especially if Accutane left you with digestion issues. So many people have had success with it. Just try it for a month and see how you feel.

Also, Chico, if I were you, I'd go with the borage oil. I take evening primrose oil because it raises and helps me metabolize my estrogen… I'm not sure you want that :P

#3342099 Repairing the long-term damage from Accutane

Posted by sbowlchica on 21 April 2013 - 12:43 AM

If we can stop one heart from breaking
We shall not live in vain
If we can ease one life the aching
Or cool one pain
Or stop one misguided person
From taking Accutane
We shall not live in vain.

#3342028 Repairing the long-term damage from Accutane

Posted by sbowlchica on 20 April 2013 - 06:02 PM

Change your diet. Trust me, it helps. And I really did use to eat a lot of fish (I was pescatarian.) I used to eat chocolate, peanut butter, and nuts all the time, but now on my low oxalate diet, I can't. Trust me, the cravings will disappear. And you'll feel better.


My doctor prescribed me 100 mg spiro, so I'm going to half it and do 50 for the first three weeks to see how it affects me. Believe me, if I start getting adverse effects, I now know to back off.


I have low estrogen, so evening primrose oil and peppermint tea are what have knocked out my acne. I'm going to keep on them.... I'm pretty sure EPO has helped to bring the moisture back to my skin.

#3336384 Repairing the long-term damage from Accutane

Posted by sbowlchica on 26 March 2013 - 02:02 PM

hey guys I haven't read through this whole topic because theres so many pages but i wanted to ask...For those of you who has taken accutane and your acne has significantly improved or is gone now, would you say taking it was worth it now that you are somewhat or are acne free? I haven't tried accutane but for me taking it will be my last ditch effort to get rid of my acne once and for all right now I'm prone to negative thoughts glass half empty sort of person so if i do take it, maybe, i think i would easily get depression which i do not want. In the mean time i'll try other acne treatments instead of taking the accutane 'cure' for acne


I took Accutane for three months over a year and a half ago. I still have hair loss, dandruff, brain fog, headaches, dry eyes, dry skin, sensitive skin, cracking joints, etc... And it didn't even clear up my acne. I'm only 21 and I feel three times my age. Did I mention that I have been off the medication for over a year and a half!?


Try some significant lifestyle changes first. Drink a shit ton of water. Cut out added sugars, gluten, hormones, and other crap. Research supplements (since my acne is hormonal and I have low estrogen, evening primrose oil is what ultimately cleared me up.) Because if you don't, you might become one of us. Trust us.

#3334912 Repairing the long-term damage from Accutane

Posted by sbowlchica on 20 March 2013 - 04:26 PM



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.

#3334894 Repairing the long-term damage from Accutane

Posted by sbowlchica on 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.

#3334834 Repairing the long-term damage from Accutane

Posted by sbowlchica on 20 March 2013 - 10:36 AM



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.


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