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...
Ive 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 eatand they have helped tremendously. It could explain the fatigue and other symptoms. Also look into vitamin d3 and calcium pills. Best of luck!
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]
