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Tried everything. Only option left is Accutane?

MemberMember
1
(@coffee32987528935)

Posted : 02/20/2017 3:25 am

I had gorgeous skin up until I turned 20. I never wore makeup because I didn't need it, I never put anything on my skin until it slowly started exploding and became a mess in my mid-20's.

Ironically, I have been working in a huge dermatology clinic for the last few years...some of my coworkers began making comments when it was progressively getting worse and worse. The acne was obviously noticeable, I was asked why I don't ask the dermatologists we work with for help. People were asking me about the acne without me even saying anything about it!

My breasts, chest area, back, jawline, neck and face are affected. I sometimes have pimples on my belly, usually above the belly button. The face is definitely the worst though.

I have tried about everything OTC and prescription for years and years. All topical creams imaginable and my face is refractory to all of them. The strongest Epiduo worked great on my back, but not anywhere else. Benzoyl peroxide makes me laugh.

I have been on 4 rounds of different kinds of antibiotics, the lastest for a year. It always comes back once the course is complete. I have also noticed I am becoming resistant to some of the antibiotics, the effects have greatly diminished. I finished the last course about 3 weeks ago and already have painful cystic acne on my chin and around my hairline. I can't move my mouth without feeling pressure and slight pain from the pimples.

I have tried switching hormonal birth control pills multiple times, going off all hormonal birth control, and taking non-hormonal birth control pills.

Also tried Spironolactone, but had to go off it because the doctors in my country refuse to prescribe it for acne (it's mainly an off-label American acne treatment and considered dangerous elsewhere).

I have a very healthy diet. I do not consume dairy, gluten-containing products or refined sugars. I also exercise regularly. I wear sunscreen daily and remove my non-comedogenic makeup after work.

Because I have been working in the dermatology field for a while now (but am not a doctor), I feel like my options on the treatment ladder are nearly exhausted. I have tried topical, systemic, hormonal and off-label treatments, among others. The only things I have not tried are chemical peels and laser therapy (due to costs). I do not believe in homeopathy as there is no real science behind it.

After I did ask the doctors at work for help and their suggested antibiotics course was finished, I was recommended Accutane as a final option by one of the junior doctors. They have no qualms about prescribing it and have given it to other patients before for things like moderate back acne.

This forum is probably skewed somewhat as those with healed acne probably aren't surfing on acne.org, but I would like to hear about Accutane or other success stories from taking other medications, if there are any on here.

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MemberMember
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(@abi72)

Posted : 02/21/2017 1:59 pm

skewed? we are many in numbers and speak from experience.

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MemberMember
158
(@accuity_drane)

Posted : 02/21/2017 8:44 pm

On 2/20/2017 at 3:25 AM, Coffee32987528935 said:

This forum is probably skewed somewhat as those with healed acne probably aren't surfing on acne.org,

Clear skin here. Accutane was not worth it. Accutane was originally approved for treatment-resistant nodular acne, not acne that is merely persistent. It is often prescribed off-label, but that's probably due to the poor enforcement abilities of the FDA. (The FDA has tried to go after Roche several times, but "stronger warning labels" are all that ever manifests, lol.) I took it despite only having some cystic acne on my back, and the consequence has been neurological problems, IBS, impaired wound healing, and cognitive dysfunction. I'll tell you everything I wish I knew before going on the drug:

- This drug is more heaviliy associated with suicide than a drug actually given to depressed patients (i.e., Prozac).
- A study conducted in humans found this drug reduces bloodflow in a part of the brain associated with depression.
- Lawsuits against the manufacturer of Accutane uncovered formerly concealed clinical trials detailing how Accutane erodes the intestinal lining.
- Norwegian Medicines Agency reported on some cases of organic brain damage from Accutane.
- Accutane can erode the hippocampus in mice, a part of the brain associated with learning and memory.
- Accutane messes with the thyroid and dihydrotestosterone levels in humans.

The average dermatologist does not actively immerse themselves in the areas of psychiatry or endocrinology relevant to Accutane. Therefore, the average doctor does not necessarily understand the full risks of Accutane. We live in an information age, and that is why it is important that we search for answers from those who know best. Best of luck. That being said, some people have luck managing acne with l-Carnitine and B5, according to Dr. Crisler.

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MemberMember
9
(@washer)

Posted : 02/21/2017 10:23 pm

I can only agree with the two above posters. I took Accutane and it has ruined my health forever. Luckily I have found ways to cope with all the side effects through diet, supplements, exercise, but it took years for me to get my health some what in order again after taking Accutane!

And Accutane never cured my acne by any means. My acne is just the same as it was before taking Accutane.

So don't touch Accutane - too risky. Look into Benzoyl peroxide or Skinoren gel for your acne.

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MemberMember
1
(@coffee32987528935)

Posted : 02/22/2017 6:11 am

7 hours ago, Washer said:

I can only agree with the two above posters. I took Accutane and it has ruined my health forever. Luckily I have found ways to cope with all the side effects through diet, supplements, exercise, but it took years for me to get my health some what in order again after taking Accutane!

And Accutane never cured my acne by any means. My acne is just the same as it was before taking Accutane. 

So don't touch Accutane - too risky. Look into Benzoyl peroxide or Skinoren gel for your acne.

 

I already wrote I've exhausted all topical options. Could you explain more about your negative experience?
 

9 hours ago, ACCUiTy_drANE said:
Clear skin here. Accutane was not worth it. Accutane was originally approved for treatment-resistant nodular acne, not acne that is merely persistent. It is often prescribed off-label, but that's probably due to the poor enforcement abilities of the FDA. (The FDA has tried to go after Roche several times, but "stronger warning labels" are all that ever manifests, lol.) I took it despite only having some cystic acne on my back, and the consequence has been neurological problems, IBS, impaired wound healing, and cognitive dysfunction. I'll tell you everything I wish I knew before going on the drug:

- This drug is more heaviliy associated with suicide than a drug actually given to depressed patients (i.e., Prozac).
- A study conducted in humans found this drug reduces bloodflow in a part of the brain associated with depression.
- Lawsuits against the manufacturer of Accutane uncovered formerly concealed clinical trials detailing how Accutane erodes the intestinal lining.
- Norwegian Medicines Agency reported on some cases of organic brain damage from Accutane.
- Accutane can erode the hippocampus in mice, a part of the brain associated with learning and memory.
- Accutane messes with the thyroid and dihydrotestosterone levels in humans.

The average dermatologist does not actively immerse themselves in the areas of psychiatry or endocrinology relevant to Accutane. Therefore, the average doctor does not necessarily understand the full risks of Accutane. We live in an information age, and that is why it is important that we search for answers from those who know best. Best of luck. That being said, some people have luck managing acne with l-Carnitine and B5, according to Dr. Crisler.

Oooh, thank you for posting! I like reading information based on actual research ^_^ My coworker, a dermatologist, has already prescribed the EU-approved equivalent of Accutane to several patients (we don't live in the US). They have, so far, reported only dry facial skin as a side effect. She recommends beginning with 10mg for week 1, uptitrating to 20mg in the 2nd week, etc. until a positive effect is seen and then maintaining the effective dosage. She would also monitor my blood results personally since blood would be taken every 5 weeks to monitor cholestrol levels (they increase on oral isotretinoin). According to her, there will always be the exception when it comes to side effects. The majority of people have positive results, while the minority is left with moderate to severe adverse event. It is like this with almost all medications, unfortunately.

Please tell me more about your experience, what neurological problems have you experienced?
 

16 hours ago, hatetane said:

skewed? we are many in numbers and speak from experience.

" This forum is probably skewed somewhat as those with healed acne probably aren't surfing on acne.org..."

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MemberMember
158
(@accuity_drane)

Posted : 02/22/2017 6:16 pm

12 hours ago, Coffee32987528935 said:
Oooh, thank you for posting! I like reading information based on actual research ^_^

You're welcome. I compile every interesting piece of literature I read on Accutane, and have read through some of the court cases against Accutane. If you have any additional questions on any of these topics, I can usually come up with a resource.
 

12 hours ago, Coffee32987528935 said:
She would also monitor my blood results personally since blood would be taken every 5 weeks to monitor cholestrol levels (they increase on oral isotretinoin). According to her, there will always be the exception when it comes to side effects.

Right, I don't think my experience is necessarily common. But my experience is probably more common than the average doctor gives credit for. For example, both FDA MedWatch and British regulatory agencies acknowledge that likely only 10% of adverse drug events are ever reported. Source: "Accutane -- Is This Acne Drug Treatment Linked to Depression and Suicide?" by the United States Congress House of Representatives Committee on Government Reform.

I had my liver and cholesterol monitored and nothing abnormal turned up. Unfortunately, there is no feasible way to monitor what is going on with your brain, retinoid receptors, or androgen receptors; and they make no attempt to monitor thyroid functioning either.
 

12 hours ago, Coffee32987528935 said:
Please tell me more about your experience, what neurological problems have you experienced?

Basically, every negative symptom of schizophrenia: Fighting the urge to stare into space, anhedonia, reduced verbal fluency, slight stutter, heavy brain fog, reduced emotional capacity, etc. I was hardly surprised when I learned retinoid signaling system genes are implicated in schizophrenia. (Source is the same book I linked earlier.) I won't pretend to know if my problems stem from retinoid receptor dysfunction, hormonal dysfunction, and/or actual brain damage. You could make a case for any one of those (or combination) based on what we know about Accutane. But I will say I have managed some symptoms by taking experimental drugs intended for PTSD and schizophrenia. It's not easy, but that's life now lol.

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