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I have been all over the internet trying to help my son and have only gotten more and more despondent and angry. My son took Accutane and is damaged. I was hopeful it would resolve after he got off of it, but more and more cascading issues are arriving. This drug caused Brain Damage. It is not "side effects", side effects are a upset tummy and a need for chapstick. No, brain and body damage is what this causes and the side effects are far, far more widespread than we all know. No, your Doctor won't help. Yes, your Doctor will deny and wash his/her hands of you. Sorry I do not have better news. If you are on this, my non-medical advice is to get off and throw it away. If you are considering it, don't. If you have been damaged, my support and prayers. 

My son is having joint pain, his knee is just clicking around, erectile dysfunction and libido issues, depression, low energy, fatigue, malaise, he seems to have shrunk, maybe bone loss? His Weight loss the point of being dangerously underweight. Everything upsets his stomach. His eyes are not right. Yes, we have been to the Dr. No they have no answers. (I am will post his blood work another day). Yes, he is off the drug and got off it when his symptoms started...

I hate this drug. I hate that I gave this to my son. I'd trade my legs, my life, for his health. God does not make those kinds of trades.

The Guardian just posted an article about the UK reviewing the suicides this past year from this fking drug. It misses the point. Her words really lay out what the MAIN issue is with this drug that we are not told. Damn this drug to hell..

My friend wrote (and I am allowed to repost her words): 

To anyone coming here because of The Guardian article: As per usual with the media, this article COMPLETELY MISSES THE POINT ABOUT THE DANGERS OF ACCUTANE!!!

To those of you saying "You're warned about the risks!" I thought I was, too.

YES, there are giant suicide warnings for accutane, all over the blackbox - just like with SSRI's and other psych drugs.

Before taking the drug, I KNEW that suicidal impulses while on the drug were a possible side effect. Anyone who reads the label knows this! As long as you're aware, the solution is really simple, right!? Don't kill yourself, get help, and stop taking the drug. Right?

WRONG. The MAIN issue regarding safety with this drug, unlike what 99% of media articles focus on (suicide while on it, or 'controversial, unproven' IBS risks) is that the permanent physical damage can start while on OR after stopping it.

THIS IS THE REAL REASON FOR SUICIDES ASSOCIATED WITH ACCUTANE!

For those severely damaged/disabled/ left stuck in an agonizingly painful body, the physical/mental suffering is so immense that life isn't worth living and they end their lives just to end the suffering. It is disrespectful and unfair to make the 'accutane suicide' discussion revolving around risks of suicidal thoughts just while on the drug. Most accutane-related suicides are unreported because they happen months/years after exposure.

With myself and SO many others, we read the label, informed of the (mostly temporary, except night vision loss & hearing issues/ sequelae of pseudotumor cerebri, which also happens with antibiotic use plus a couple other rare things) possible side effects & we thought we had informed consent.

NONE of the accutane-injured people I've spoken with felt they were adequately warned by their prescribing physician/drug label about serious permanent (& sometimes disabling) physical problems, often starting not on the drug but after the drug is stopped, including:

1. -progressively deteriorating joints & destruction of synovial membrane/fluid (possible joint pain/arthralgia & DISH mentioned with high doses/long term, but NEVER mentioned that this could occur AFTER discontinuation with no prior joint pain/warning while on the drug. 'Joint pain' in the insert is never classified as permanent synovial damage, but rather vaguely associated with a mostly temporary inflammatory reaction or possible DISH, which isn't anywhere as serious as synovial damage. The label is incredibly misleading as well as physicians' understanding of this issue.)

2. -permanent muscle damage (that occurs w/out warning such as weakness/pain after the drug is stopped - not just rhabdomyolysis, a rare condition that can be caused by many different drugs, as is mentioned in the insert! My muscles were 100% fine on the drug, I was climbing & biking extensively, 5 month after quitting they broke down and I could barely walk!)

3. -progressive degenerating/desiccated discs (not listed at all in insert. I & many others had perfectly fine back/discs on the drug, months/years after developed early degeneration)

4. -bodywide tendon/ligament/bone/muscle pain & damage (mentioned as 'rare' side effect in the insert, but NOT mentioned that this can occur after discontinuation & progressively worsen with time. My body fell apart 5 months after I quit, with little to no warning while on it)

5. -permanent sexual dysfunction (not listed at all in insert!)

6. -IBS/Crohn's (mentioned it could occur while on the drug and persist, but never mentioned it could occur months or years after exposure. This controversial effect is refuted by all but one major dermatology studies, & most derms don't even believe there's a link at all! My doctor flat out denied it, saying it was a 'myth'. The studies on IBS/Crohn's/IBD stating 'no connection to accutane' are totally fraudulent!)

7. -permanent serious BRAIN DAMAGE (not listed in insert! Depression, yes, brain damage no! Also can occur while on or after discontinuation)

8. -permanent meibomian gland dysfunction that starts AFTER stopping the drug with 0 symptoms whilst on it (happens to A LOT of people, also not listed insert and denied by most doctors despite existing research. Most dermatologists & even some ophthalmologists I speak to completely deny this as being a possible permanent issue. 5 years after stopping, I have now developed minor MGD and it doesn't run in my family...)

9. -visual disturbances - permanent night blindness is mentioned in insert, but development of floaters & progressive eyesight deterioration after discontinuation is not. Also, permanent visual issues are largely underestimated and listed as 'rare' when in fact they are fairly common!

10. -organ damage - your organs can be permanently damaged either on or months after stopping the drug, with or without abnormal lab results. Insert mentions that permanent organ damage is possible while on the drug and that 'it may not return to normal after'. Many of us thought we were being appropriately monitored only to find organ damage occurring months/years after discontinuation.

11. -permanent skin damage- the insert/physicians emphasize that cutaneous side effects are temporary and return back to normal within 6 months. I, and many others, find that skin becomes permanently fragile, thin, aged, dry, and overall damaged. For some, this damage occurs AFTER stopping the drug. No warning about that! Most doctors I've spoken to say it's 'antiaging' & deny that the majority of people get permanent dryness and aging! Bullshit!

12. -alopecia - mentioned in the insert, but NEVER mentioned that permanent hair loss can happen AFTER stopping the drug, with/without hair shedding on the drug. VERY underestimated - most docs will say they've "never heard of this and it's extremely rare, only at higher doses". Bullshit! I know SO many people who permanently lost 50% of their hair, even with low dose.

13. -neuropathy / paralysis - another severe damaging effect that can occur after stopping, is never mentioned in the insert

14. -permanent feeling of illness, chronic fatigue, malaise & general severe sense of poisoning/unwellness: so many accutane users report this post-accutane. I didn't have an ounce of malaise/fatigue on the drug but 5 months after quitting I felt incredibly ill, this feeling has only worsened with time 5 years later

15. -& many many others....

So bottom line: I was really disappointed with The Guardian article on accutane risks/suicide. It's the same as every single news article I've read about accutane and does NOTHING to inform us about the TRUE risks of accutane. EVERYONE KNOWS that accutane has been linked to possible suicide risk to patients who are taking it. That's not the scary part. I knew that & it didn't me from taking it... most of us were CERTAINLY not informed about everything listed above.

MANY PEOPLE KILL THEMSELVES MONTHS OR YEARS AFTER STOPPING ACCUTANE for the reasons listed above!

Wish I had better words for you all. Report your side effects EVERYWHERE. The Dr. The FDA. The Drug Company. All over the internet. "They" don't care, but maybe the word can get out, if nothing else...

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I’ve never taken accutane but as far as the upset stomach/weight loss I did suffer from malnutrition from a pancrease issue (pancreatitis/enzyme deficiency). I take digestive enzymes (Creon) every time I eat and they have helped tremendously. It could explain the fatigue and other symptoms. Also look into vitamin d3 and calcium pills. Best of luck! 

Edited by hlp334

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This is the letter that I sent to the review board in the UK for their upcoming review in February 2020. I am almost certain they will do the usual, "Benefits outweigh risks..blah blah". Regardless, it is the only way I can do SOMETHING.

The email is: [email protected]

MHRA,
 
I am writing in regards to the upcoming inquiry regarding Roaccutane/Accutane/Isotretinoin as a concerned parent. I firmly believe this is the most dangerous drug on the market today. No amount of blood work, monitoring, or expanded PIP's will make this drug safe enough for the bodies and brains of our young people. My previously entirely healthy, happy son has been damaged permanently by this drug and it should be taken off the market. 
 
Side effects of this drug are grossly underreported. Because of this, the public believes it is not as dangerous as it is. The term "side effects" does not do justice to the horrors this drug causes. Permanent brain fog, permanent sexual issues, permanent vision issues, permanent depression and permanent joint pain, triggering of autoimmune diseases and cascading health issues from the gut/brain malabsorption are caused by this brain-damaging chemotherapy-type drug. If the public knew that the risk of PERMANENT damage was as high as it is, then few would take it. In fact, sheer disbelief and denial over how bad this drug is is what leads to its continued presence on the market. Surley, the government would not allow a drug that is this bad on the market for 35 years, right? Knowing what I know now, it is unbelievable that this is still on the market.
 
My beautiful, only son, my only child, took Roaccutane for about 6 months two years ago and seemed to do okay with normal side effects (dry skin, bloody nose, etc). I now realize that it stunted his growth. He is no taller than myself or his father, despite having very tall brothers and uncles on both sides of the family. He also has had and some other issues that I now realize is likely from the drug, although I did not realize it at the time. My Doctor had told us that there was a "very small risk" of growth stunting, depression, dry skin and not to get pregnant. Any paperwork would have been dismissed as, "All drugs have side effects." How wrong I was.
 
The real trouble started when his acne returned. I thought that a short second course would be appropriate, especially since his first round was "successful". In July 2019, he started taking 80 mg a day. Two and a half months into his course, he came to me and told me that he noticed something wrong with his penis. He stopped taking it THAT day. Now, almost four months later he still has raised testicles (unsure if they are shrunken or simply higher), Peyronie's Disease (curvature), his penis has rotated on axis, and has a possible decrease in size of penis. He previously reported excessive post-orgasim exhaustion, issues with rebound rate, decreased sensitivity and libido issues as well. 
 
As his mother, I should not know this much about his sexual functioning. Imagine how scared he had to be to come to his mother about this! I am still awaiting the results of complete blood work checking his hormone levels. Although, I have discovered due to this drug damaging your pituitary gland, that even if he is lucky enough to have 'normal' blood work, the hormones may not be uptaked into the brain. I have personally spoke to almost a dozen other men with permanent sexual issues from this drug, some of them decades afterwards. I have also spoken to people with other permanent issues decades later.
 
People find it hard to believe my son has so many issues from a legal drug. It seems impossible, until you realize how common this is. There are Facebook groups with thousands of members suffering from side effects. It is an open secret. My son has ongoing joint pain, changes to the texture of his hair (because it is a chemotherapy-type drug), sleeping issues, ongoing low energy, and stomach issues. He lost weight; a lot of it. He is 1.55 meters and only 60 kg, despite my attempts to fatten him up. His stomach is bothered by almost everything he eats. My son is worried his hair is thinning, and I think he is right. Worse, he has developed light sensitivity, decreased vision issues and appears to have some sort of blind spot at night in the center of his vision. A trip to a regular opthamologist shows no issues, we will be seeing a neurologist opthamologist when I can get him in, but I have little hope doctors can do anything. They do not seem to do anything after this drug damages the body and are in denial. The dermatologist wipes their hand of you, the specialists are in denial and the patient is doomed. 
 
My son also became very, very depressed on this drug. He and I talked about it, his doctor talked about it. I watched as he became negative, irritable and depressed-but yet, the Doctor continued to prescribe it. It was not until he had been off the medication for a few weeks that he realized just how depressed he was. We thought we were aware of the effects of this drug, we were paying attention and looking for signs, yet my son was floored at how much better he felt off of it. That is terrifying. No one realized how bad it was. 
 
In regards to the suicide risk; suicides are not due to the oft-quoted "predisposition to depression" mindset. If so, you would think simply getting off the drug when your depression gets too much, and monitoring by concerned, loving parents and mindful doctors would stop it. But it is not the case, this drug literally changes the very way a person thinks. It induces psychosis and irrational thinking without warning.
 
Do not underestimate the silent epidemic of young men suffering from permanent erectile dysfunction, testicular pain, genital numbness, lack of bility to orgasim, and libido as part of the, "Isotretinoin Suicides". The effect of a young man losing their sexual functioning absolutely causes suicide. Due to the type of nerve or brain damage to the sexual organs/part of brain, doctors are little help. Many suicides from sexual or other permanent issues caused by this dangerous drug, but they occur months and years later out of sheer desperation. 
 
Money makes the world go around, but at the cost of our young people's bodies and minds. This drug is far more dangerous than realized. While not everyone suffers permanent side effects, I feel that no one escapes unscathed. The damage is cumulative. No amount of regulation will make this safe. None It is like asking, "How much rat poison is safe?" The answer is none. 
 
Please take action to save other children. 
 
Respectfully, (name redacted) 

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