Patti S. Lodesa Story
Started March, 2002
This is a true account of how my life was, what happened, and how it is now after ingesting the drug Accutane in 1985. I took it for a mild case of adult onset cystic acne.
Before Accutane, I had always worked, had an active social life, was involved in many activities, (including church and college classes) and in general enjoyed life to its fullest. I was not given to despondency, and did not drink or smoke. I owned a lovely condominium with a gorgeous pool and considered myself to be quite fortunate. I was 36 years old, and had a good relationship with a man who is now my husband of 15 years. I think it is quite important to point out here that I was NOT a depressed teenager. Roche Pharmaceutical and many doctors allege that teenagers are a depressed lot anyway, and that is why they end up killing themselves. I was however a bit vain, and the little cysts that cropped up on my chin from time to time bothered me. I decided to see a dermatologist for the problem. Dr. Jerome Aronberg was happy to prescribe Accutane for mea for as he said, and I quote, aoeyou may as well take it, youall never have another zit as long as you live.a
I did OK on the drug. I had only some chapped lips and dry skin. I had the required blood test done, and followed all the instructions to a T. Before taking the first pill, I remember reading a warning posted in the drug directions. It said, aoeMinimal bone change has occurred in a few rare cases, the long range effect of this is not yet knowna. To this day, I recall thinking to myself, aoeWow, this stuff sounds kind of rough.a But then I remembered that we live in America and the FDA would never allow something on the market that might be harmful to an American citizen. With all the confidence in the world in our regulating agency I swallowed the first of the damnable poison capsules. I took it for four months, 40 mg one day, 80 mg the next. I weighed about 135 lb. at the time. Sure enough, the zits went away. My face and lips were dry, my hair thinned some, but that was little price to pay for no zits. No one knew at that time that more side effects would be listed later on in the warnings and that finally, people would have to sign a release before taking it. Here is a chronology of my experience with Accutane.
1986-Sinus, skin and ear infections. This seemed odd to me, because up until this time, I was rarely sick, and felt great. Antibiotics helped with the sinus and ear infections. After swimming in my pool I noticed my lower back beginning to hurt me and funny yellow pockets of pus appearing on my forehead, (and only my forehead). The pain in my back got progressively worse until I was forced to see an orthopedist who took x-rays of my back. He said I had an advanced case of osteoarthritis of the spine. I was flabbergasted. I had never had a backache in my life pre-Accutane. Without even knowing what Accutane was, he told me no pill could do this much damage to someoneas back. I think it worthwhile mentioning here that even though this man had never heard of Accutane, he did not hesitate to tell me it was not the cause. Even when I told him about the warning on the package insert about bone change, he made nothing out of it. Thus began the saga of my begging doctors to listen to me, and having them look at me like I had a hole in my head. Of course the more I tried to state my case, the more they figured I was off on a rant or tangent and assumed that I was just a bit wacky. This is right up Roche Pharmaceuticalas alley. Their defense against the allegation that Accutane causes depression and other central nervous system disorders is that the person was a bit nuts to begin with. How do you fight something like that? The victims of Accutane find themselves in a real catch-22 type situation.
1987-Chronic fatigue and mild depression. I found myself terribly sick and was forced to quit work. The depression slowly escalated and I had terrible body aches and pains. My eyes were constantly dry and the blood vessels in them would suddenly become wildly inflamed. My eyes were also very sensitive to light, especially fluorescent light. I began to live like Dracula, venturing forth from the house only at night. By this time the depression had escalated to the point where I had to start taking antidepressants to hold off the suicidal ideation thoughts that continually plagued me. An overgrowth of staphylococcus and streptococcus bacteria was scraped from my skin by Dr. Sharon Tiefenbrun, M.D. of St. Louis. I had to go on prophylactic antibiotics to keep my face and hands free from painful open sores. It is now documented that this bacteria, even after therapy with Accutane is stopped, is colonized in 50% of the Accutane patients versus the 20-40% in the general population. All in all, I had skin, ear and sinus infections galore. To this day, I take strong antibiotics to ward off the bacteria and to keep me from feeling like I have the flu.
1988-Hospitalized for inflammatory bowel disease at Missouri Baptist Hospital, St. Louis.
I suffered for years with this. I could not leave the house for fear of getting too far from a bathroom. The abdominal pain was excruciating. Finally, I discovered for myself that if I did not ingest anything with preformed Vitamin A or Vitamin A palmitate in it, my bowels would calm down. Of course this has to do with the fact that Accutane is a deranged form of Vitamin A and much more potent.
1990-2001-Mostly I tried to shut up about Accutane.
I did this for several reasons. People were sick of me talking about it. The more I tried to explain it, the more people thought I was just making excuses for the terrible depression I found myself in. Accutane was not an excuse for the depression, it was the REASON. I had taken Accutane at 36 years of age. Ten years later, when I was 46 people thought I was going through menopause. When I was finally able to afford a computer, just 6 months ago, (I have not been able to work all these years) and saw the thousands of others who were suffering, it became my quest to reach as many as I could and try to warn them. I continue to take all the medications that have kept me goinga just going mind you, not feeling well at all, and try to reach as many as possible.
The side effects I have suffered as a result of Accutane therapy remain with me today, 16 years after I took it. Take a look at the internet which is full of heartbreaking stories one right after another about how Accutane stole peopleas lives from them. The thing that is so horrible about Accutane is that the damage is occult. You do not see the worst of it while you are taking the drug. It happens later, some times years and years later. Then they are told (incorrectly so) by their doctors that there can be no link between a pill ingested years before and their myriad health problems. When the drug works initially and clears up a personas face, they tout it as a wonder drug. They report to their friends how great it is, and they can see it clears up the acne in a lot of cases. Of course a person wants a nice face; of course they want the PILL. Itas easy to take. It promises love, romance and beauty to the young person. You would have to be nuts not to want to take it, right? The teenage magical thinking is still in place, they think they are invincible, and they think the side effects will
not happen to them. Of course, isnat their trusted dermatologist telling them how rare the side effects are???
The general public cannot make an INFORMED choice about Accutane, because we have been misinformed about it, or rather more to the point, lied to. They donat understand the underlying biological possibilities of something like Accutane, and are like sheep being led to the slaughter. Unlike a slaughter however, Accutane is a slow painful death. It has to be removed from the market altogether or we will have more youngsters unknowingly giving up their lives.
Where, oh where, are the regulating agencies that care more about human life than money. Who will take a stand for the Accu-aoetainteda? When will the pharmaceutical lobbyists get out of Washington D.C.
Accutane causes the side effect of suicide ideation. To this day, I fight this with every fiber of my being. I do not want to die. I like life, I like my life. But Accutane is extremely potent. I am on a lot of antidepressants (no anti psychotics) and they keep me coherent. Sometimes the pain is so bad I can barely hold on, but I do hold on because I want to tell as many as possible.
Whoever reads this please help us. It is too late for those of us who have already taken Accutane, but for those who are still considering it; help us spread the word along-Accutane kills.
Patti Lodes
3926 Childress Ave.
St. Louis, Mo. 63109
2009
Much pain has ensued in these last years, but I credit the antidepressant Celexa for keeping me from killing myself. I have been on antibiotics for all these years and of course, they no longer work as well. I have been sick with a sinus infection for the past 3 months. I have tried every antibiotic in the book. I feel on the verge of sepsis. I am ready to go; however, I will not go without making a last statement about Accutane.
I will have a new e-mail address soon and home address. My husband and I are separating because he thinks I am lazy. What an ignoramus he is. I hope to be posting for some time still. Patti
Mod Edit - There was one sentence that contained ideals that are not encouraged on this board so it was removed.
I suffer from depression and BDD (my concern is my facial skin).
IAm now 22 years old and took Accutane for 6 months when I was 20. I suffered already then from BDD, I just didnAt know it.
IAve never had serious acne problems in my face, it was far worse on my back and chest. My face was when I started Accutane quite clear, nothing unusual (but my BDD made it worse in my mind, I wanted perfect skin).
I went to a private dermatologist and tried Tetracyklin (antibiotics), wich didnAt help. The next step for me was Accutane, but the doctor wasnAt sure. I kind of persuaded him and ended up eating 30-40 mg of Accutane for 6 months.
The dermatologist prescribed it to me mostly because of my oily skin, because at this time the cystic acne on my back and chest was gone, just some scars were left.
During the course my main problem was the dry skin wich everyone has to deal with eating Accutane. But the thing is, now, more then 2 years since I stopped, my skin is just as dry as it was during the course. I canAt take a shower without being extremly dry after and so on.
My skin has always been sensitive, but before Accutane it was oily and sensitive. Now itAs dry and sensitive, wich for me is far worse. I still get the same amount of small pimples and whiteheads now and then, just like it was before Accutane.
I so regret I took Accutane, it has destroyed my skins balance totally and my life is shit. Mainly because of depression and BDD, but my skin is in my eyes the greatest evil.
IAve tried different moisturizers since I stopped taking Accutane, but for the last two weeks IAve just cleansed with water and mild facial cleanser every now and then to get a picture of how bad the dryness is without moisturizers.
I took accutane for 6 months (40mg daily). I took it at 16.5, I am now 23.
I still have dry fragile skin, which is the main side effect. It has also made me feel much weaker in general, I just don't feel the same. Perhaps my whole body is dried out. I think this medication is a real gamble, I took it not knowing the potential consequences! I think it should be restricted to the older crowd of people whoe have real calcitrant cystic acne, not the usual prescribed crowd of teenagers and those around 20.
I regret accutane more than anything in my life. It has made things in my life a lot harder. Of course I can not pin all my life's problems on accutane, but it certainly complicated things much much worse.
I would suggest anyone considering accutane to pursue other avenues of treatment. Partcularly looking into diet changes, and dan's regime, and perhaps laser treatment. I have spent much more money trying to repair the accutane damages than acne laser therapy would have cost believe me, so although that treatment is expensive, it is a small price to pay...
I am 41 years old from the UK and have suffered from acne all of my life more on than off ever since I was 12.I have taken every lotion, potion and pill that you can name in the quest for clear skin.
I had severe acne that has scarred all of my back and face. Approximately 3 years ago I saw a dermatologist who prescribed Roaccutane, this initially worked (20mg).I was taking 45mg per day again after very painful breakouts of cystic acne in December that would not go away!
My face was clearing and my scars are thinning and it has only been 4 weeks! I did have dry eyes, nose, skin (obviously) and some aching of joints. It had worried me about the side effects that I was totally unaware of 3 years ago and this is the reason why I have joined this site.
I was 4 weeks into Roaccutane 45mg per day and my skin had been showing great improvement and I was really happy with the results so far. About two weeks ago I had lower back/ rib pain and I could not lay down to sleep. I asked for tests to check my bloods ,they showed inflammation somewhere in my body. They first thought it was a tear in a muscle but i cannot recall having done this, the doc then says I have pleurisy! could this be related to Roaccutane ?
I have came off 'tane' so as my body can heal and cope with the other meds that I was taking.
I wanted to continue with 'tane' as I had the best skin I have had for 30 years.
Then it all started to go wrong.
I was admitted to hospital. Continuing from my post on 5th May 'Shortness of Breath', I returned to my doctor with pain now moving up through my back. He was very concerned and sent me for blood test and x-ray of my chest. My results were immediately rang through and the tests showed high results within my clotting.
He sent me immediately to MAU which he had already consulted with, for advice. I was shocked to see my name on the board and a bed ready and waiting!
I was hooked up to all kinds of machines and gadgets and my medical history taken. They immediately injected me to thin my blood in my stomach which was quite painful.
I was kept there for 2 an 1/2 days in case I had a PE.
When I moved along the side ward I had a felt unwell, moments before I was monitored for blood pressure, temp etc which was completely normal. Within seconds my heart rate increased to over 100 my temp soared, blood pressure rocketed, my sugar level rose very fast and my vision blurred and i could not breath.
It was like a scene from casualty or ER, I felt like I was taking part in a drama but I was not there very surreal. I thought I was going to die.
The doctors were unsure what had happened.
I continued to be closely monitored for the next 4 days dopped up on pain killers and continued with blood thinning injections. I had a CAT scan which showed no signs of blood clots although the doctors said that does not mean I did not have one on admission, it may have dispersed with immediate injections.
2 days before I went home I had flushing which happened at random and without warning sometimes without temp just redness. They had no reasoning for this.
I did ask the doctors again if Roaccutane was to blame for some of my symptoms, I now had 5 doctors looking into my case in various departments. They consulted and had come to the conclusion that I have got pleurisy (which is on the mend) the pain came from the infection and my pleural wall membrane was being dried out from Roaccutane. This traveled up my back to my shoulders and through to my chest affecting my breathing. The rest of the minor side effects are Roaccutane. The doctors said they were sure I had a clot somewhere but they were unsure where but it has now gone ( thank God).
I am at home now on the start of my recovery. Doctors said see my derm and reduce my dose, it was just a coincidence that I had these side effects and very rare. I have talked to others on this site and have made the decision that I just canat risk my life. I donat know if in the future Roaccutanes side effects may rear their ugly head again, until then please look at the warnings and take them seriously because the rare case could be you.
A little background: 28-year old male. Cystic acne on my back since I was about 16, varying in severity over the years but mostly moderate to severe. I took Accutane (actually Sotret) for six months, 80 mg/day. I weigh about 170 lbs. (roughly 77 kg), so about 1 mg Sotret/kg bodyweight. Aside from acne, I'm in overall good health. It's been a little over a month now since I finished.
Towards the end of my course, I noticed that my hair was getting very dry and wiry and seemed thinner. I didn't notice much actual hair loss, but my hair just felt and looked very unhealthy. It began to grow in different directions; my hair has always been nice and straight. Dark circles were developing under my eyes, and the skin on my face looked bad as well; it looked thin and discolored somewhat. In short, I just looked really sick. I was really worried by my appearance, so I decided to discontinue the medication. I threw away what I had left, which was only about two weeks' worth. I had some scalp tightness as well which persisted for a couple of weeks after finishing, but that's gone now.
Now, over a month after finishing, I've still got some problems. My hair is looking better, and I can tell the oil is coming back in it, but it still looks and feels pretty bad. The dark circles under my eyes have improved, although they're definitely still worse than they were before beginning the medication. I've also got these fine lines under my eyes which have appeared only within the past couple of months. On my forehead, I've developed lines as well. They're not too noticeable, but they've definitely appeared since I've started Accutane. Essentially, I'll say that it looks like I've aged prematurely thanks to Accutane. I'm trying not to get too distressed, but I have to say that these things worry me. It's only been a month post-Accutane, so maybe in time things will improve, but I'm pretty damn concerned that maybe they won't.
As far as my acne goes, it's a little better, but it's still there. In fact, I developed a couple new cysts just about a week ago. And of course, I've got some pretty good hyperpigmentation and scarring on my back as well from years of this shit.
So, in summary, I developed some pretty significant side effects (although nothing like some of the horror stories I've read), which I'm not sure are going to go away (or at least improve to a point where they're tolerable). Accutane didn't do what it was supposed to do - I've still got acne. So I'm still searching for something to treat my skin effectively. And the Accutane cost me a shitload of money - roughly $800 total, in addition to the cost of dermatologist office visits. Insurance helped some, but my insurance premiums are now $30 a month higher. Great. Excellent.
So I'm not going to say that no one should take Accutane under any circumstances. For some people, it completely clears them. But be aware of the very real possibility of side effects. Don't say, "Well, it's not going to happen to me." It might. And it might cost a lot. And it might not work. I know a lot of people just want their acne to be gone. I understand that. It's a disease that makes you depressed, that kills your self-esteem, that hurts. I know. But please don't jump into this without seriously thinking about the pros and cons. Educate yourself. Good luck.
Update: 5 months after what you see above, a little over 6 months after finishing Accutane. I've got more or less the same set of problems mentioned above. My hair still looks and feels like shit. It's frizzy and thin, especially on top, and it bothers me a lot. I've been asking if it'll get better, but no one can assure me that it will. I've been told that it probably will eventually go back to normal, but I'm still worried. I'm worried that it might be permanent. So I'm helpless to do anything but wait and see. I've still got fine lines on my forehead, which I've been treating with Retin-A - they've improved slightly. These issues might be acceptable if Accutane actually cleared my acne, but it didn't. After realizing that Accutane was a giant failure, I was eventually able to get rid of my acne through diet, fortunately. It turns out that, for me, it's dairy and soy (and for those who might say, "How do you know it wasn't the Accutane that cleared you?" I'd reply with, "Because when I eat dairy/soy, I get acne; when I don't, I don't get acne." It's that simple. It's perfectly clear now that I've found the connection, but finding it was tricky and something I had to do on my own initiative). I'm not saying that everyone can clear their acne in this way (through diet), but from what I've read, this is the answer for many people, not Accutane. Which leads to the question: Why didn't any of the five dermatologists I've seen over the years single this out as the cause? I've come to realize that it's because doctors' education & training are influenced heavily by pharmaceutical companies. There is a shitload of money to be made from drugs like Accutane; there is no financial incentive for anyone for a doctor to tell a patient to stop consuming a particular type of food. This is not hysteria or fear-mongering or new-age hippie crap; it is the truth. It took me quite a while to come to that realization (and I'm by no means the only one saying this). But I digress.
So I wish I could say that I overreacted when I wrote my original post above, and that all the symptoms I described went away nicely. But they didn't. Now again, maybe they will get better in time, and in the grand scheme of things, my symptoms could've been worse. But I hate having shitty hair and premature fine lines. I don't need this shit; I've got enough other issues to deal with in life without this. It's depressing. So yes, I still regret taking this fucking drug.
I was on Accutane (RoAccutane) as a teenager (14-15yrs old) something like that for the usual course (6-12 months)
It worked wonders for my acne and my topical acne issues dissolved.
However i'm now 24 and I've started getting discoid eczema on my arms and thighs...... highly visible and highly itchy
I've always had dry skin (mainly hands) after finishing Accutane. Much worse in winter time where I can't go anywhere without moisturizer cream.
Honestly, I'd much rather cope with having pimples during teens than be stuck to a life of ointments , moisturizers and creams.... let alone the visible signs of a skin disease on your body........
If my condition gets worse I will be at the point where wearing t-shirts or shorts will be as embarrassing if not worse than the original acne situation anyway..... seems like a ridiculous paradox.
I am now 21 yrs old. I started developing acne around 13-14 yrs old. I had used benzoyl peroxide and other light treatments and they all worked for my moderate acne.
After a time I developed an allergy to BP (large red hives) and my treatment options became very limited. I had tried just about everything and my acne was becoming more severe and cystic. After fighting it for 2 years I went on Accutane. I was concerned and so was my mother who is a RN.
I cannot remember what dose I was on but was on the medication for 6-8 months of my junior-senior year of high school so that puts me around 17. It worked. I had practically no acne just the scares. I had very little side affects besides dry skin, sun-skin sensitivity, and chapped lips. These all went away when treatment stopped.
Somewhere in the middle of my freshmen year of college around 18-19 yrs old I developed moderate-severe acne again. I remember someone asking me if I had an allergic reaction the one day I didn't wear makeup to class and decided to go back to the dermatologist. Once again we pathetically tired the antibiotics which of course didn't work. So I was put back on Accutane.
Once again I do not remember the dose but I was taking this for a second term about 6-8 months. I was in college and didn't think it'd hurt so, this time around I did drink alcohol while on treatment. I'm not sure if this increased the side affects or not but it may have been a factor. Again I had the dry skin, sun-skin sensitivity, and chapped lips. However, towards the end of my treatment I began to not feel like myself. Of course graduating, going away to college, friend and heartbreak issues are all stressful and life changing but this was something more. I began to have slight suicidal thoughts and just felt depressed and vulnerable. I had kind of mentioned this to my mother but hadn't gone into much detail. I even tried to tell my doctor and he just shrugged it off and didn't really listen. Luckily nothing serious happened and I came off the Accutane with clear skin and my annoying side affects along with the depression vanished.
Right as I was coming of Accutane I was put on Loestrin 24 FE, to treat another condition. This may have affected the length of my acne free reign. So after Accutane and now on BC I was acne free.
September 2008, I decided to switch BCs to Orotho Lo brand because of annoying side affects. What a mistake. I developed moderate-severe acne again. I also began having mood swings. I was put on Yasmin (sp?), another mistake. My acne did not get better and still had mood swings. Around November I took myself off. Other complications are two accidental concussions received during 2008 each with a case of post-concussion syndrome - depression/moodswing is a side affect. Another freak incident was that I formed a blood clot after one concussion, because of the twisting of my neck. Luckily it is gone.
I am 21 and have moderate-severe acne again. I am again going to a dermatologist. The antibiotics are barely keeping the acne at bay. I am going for microderm and peels. I am being put on Spironolactone and another antibiotic which I refuse to take - they don't work for me. We are awaiting a blood test to see if I am prone to clotting before going back on a BC that works for me. There has to be another way.
I refuse to ever, ever, ever go on Accutane again. After reading and really doing my own research I can't believe that I was ever on a drug that dangerous. It's not worth it, the acne came back. I wonder if being on it had anything to do with my clot experience or will so in the future.
I find myself extremely lucky not to have had as many band experiences as others have and hope that nothing more will develop in the years to come. I can only pray for those affected and that I will not have anything as severe happen in the future.
I will never go on Accutane again or let anyone I know or love ever go on it.
I really hope there is some solutions and that roche will be forced to help us deal with long term side effects.
I started accutane at age 13 for extreme cystic acne that left scars i still have today at 39, I have no doubt my scarring would be worse without accutane, but i seem to have traded scars and a half okay complection for shortness, I did not grow past 5'7" that was my height at 13 when I started (accutane is linked with premature closing of growth plates even after 1 pill!), Baldness my mother who has severe acne scarring and was on accutane also has severe hair loss, bad knee pain if try and jog for too many miles, extreme neck and back pain so painful i cant move when a pain attack occurs, and finally I have low sexual response and cannot achieve an erection under any circumstances even with viagra.
I dont smoke or drink alchol/caffeine, im in ridiculous good health jog lift weights, eat healthy.
I have tried everything I can think of except Dostinex (will canadian doctors prescribe this under such a situation?)
never had the depression thing though strangely accutane did make me more assertive and happy even, while i was on it.
read some scary things about how evil the accutane company is, how accutane causes serious damage at cellular level that may actually shorten our lives significantly, scary stuff.
would like to one day actually have sex, I have had so many women interested in me its very frustrating. But probablly will be the 40 year old virgin next year.... thanks accutane....
I took multiple courses because my acne was the most severe type and was unresponsive to all but the highest doses, in addition i could not go for more than a year without major cysts unless i took a course yearly. from 13 to 16 i took steadily larger and longer doses that barely kept the acne in check. upon reading about extremly high doses having nearly permanment results i was unfortunately able to convince my doctor to prescribe 80mg daily for a 3 month course, this worked extremely well but had to be repeated every year until I was 26 at wich time i had so little drive and life ambition left i no longer cared about the occasional flare ups that were gradually lessening anyways. now at 39 I do have drive, desire and a good career but the sexual responsivness feels like a frustrating emptyness in my gut.
Im male, 18 and have been on Oratane for the last 6 months. I had cystic acne on my face and back, tried Doxycyclin and benzol peroxid but neither had much of a result. I was so friggen happy when I went to a derm and he said that oratane would clear all my acne, I was really wrong to feel that way.
A couple of months into the treatment is when the depression started, I still stuggle daily with the side effects. I didnt feel myself at all, I started doing and saying really stupid things. My friends and I had both noticed the change in my deminor. At that point I researched the drug and its link with depression. I stupidly decided to stick with it, as it was my last option for acne I had battled with for so long. Concertration and decision making is beyond me at this point, I am even having coordination probems with my arms, thinking im not swinging them the right amount when I walk in public (embarrising, I know). I feel so uncomfortable in social situations (not knowing what to say, how to act, often fumbling my lame replies/questions) or when people are looking at me (when usually thats exactly what I would want... lol) I used to be an extremely social person, going out every weekend and a few times during the week. I am now confined to my house only leaving for smokes or alcohol. I am not the person I once was and it scares the s**t out of me that I wont be able to get through this. It seems hopeless. I dont answer my friends calls, I just dont want them to see me like this. I constantly loose train of thought and talk to myself in my head, and the things Im saying in my head I get so frustrated with and have to tell myself to shut up. Suicide has crept into my thoughts, but I dont think I could do it to my parents after all they have done for me.
Ive lost my job, my friends and its all because ive lost all sense of myself. People ask for so many material things in this world and are angry when they dont get them. All I want is to just be myself, It's true, you really dont know what youve got untill its gone. Who without going through depression could or would think you could loose yourself? My parents have tried to get me to see a physciatrist, I refused to, but now it really seems like a valid option. My life is 100% pathetic. There has been a bit of s**t going on in my life lately so I cannot prove that Oratane is the only reason for my depression. But rapid hairloss (a friggen nightmare), dry lips, dry face, skin rashes all over my arms I can.
So here I am, drinking alone on a friday night posting about my pathetic life hoping I can change atleast one persons mind or make someone think a little bit harder before starting the drug. I never thought this would be me. Its is really so screwed up to think about.
By posting this I hope I can make people aware of the possible effects of Oratane/Accutane/Roaccutane and to really think carefully before going on the treatment. Please only go on it if you have serious acne and have tried other prescriptions (Doxycyclin etc). And at the first sign of depression or hairloss please go off the drug.
Acne was really hard for me, the 'cure' has been so much harder. Learn from my mistake, its just not worth it.
Since I'm new figured I'd share my story.
I was fed up with the way my skin was after going through so many meds when my Family Doctor brought up Accutane. He went over it with me and sent me to a derm who would prescribe it. He explains the potential side effects stating he'd start me off at a dosage of 10 mg to see how I'd react. 3 weeks pass and my face is relatively clear except I know my hair coming out in clumps and bald patches developing on the side of my head. I went back concerned and was told the hair loss would come to a halt from anywhere between 2-6 months.
2.5 years later and I have a receding hairline and really patchy hair. Especially on my sides which irks me the most. It's as if my hair type totally changed, I went from having rather straight hair to some curls that feel really weak and grow in different directions.
The one med I regret ever taking, I would much rather the acne at this point. Talk about ruining your self confidence and I'm only 20, I can only imagine it getting worse from here. I actually feel rather ugly, might be the depression in me creeping out.
If you were thinking it was hereditary, no one on both sides of my family is bald. My mother and father both have a full head of hair well in their 50's, I guess I'll be the first bald guy in the family in no time.
Rather depressing.
(Remove the IMG part and paste the link in your browser)
^ The type of hair use to have. If I could accept my current condition I'd take a picture to illustrate what it is I'm talking about but I hate being in front of cameras now.
You know, I am not one to make excuses, and I always take responsibility for my actions. I have never really studied Accutane, and this is the first time that Iave heard anything about negative effectsa Now I am left very curious about my own experience with using it.
I began taking Accutane when I was 17a I took it for 11 months, but inevitably I had no such luck with permanently getting rid of my acne. Anyhow, near the end of my being on Accutane I had a complete and sudden change of personality. I didnat even realize that what had happened wasnat normal till about six months ago after being on anti-depressants for a year.
Prier to using Accutane I was a very religious aoemolly-mormona (Iam LDS from Utah). I had never even had coffee, or my first kiss, by 18 years old! Then all of a sudden it was like I had my first kiss, and then the next week I lost my virginity. About three months passed by, then I had my first beer, and within two weeks I was drinking, smoking, and doing drugs! I also completely quit doing things that I enjoyed; art, writing, reading, cooking, exercising, ext.
Now these were all my choices, and I donat regret the knowledge that I have gained to be who I am todaya But my question is, if I had never taken Accutane, would I still have decided to take the same actions?
Or maybe it was because a clear complexion gave me confidence, which in turn gave me the opportunity to do things that I normally wouldnat doa
Iam really not sure.
I hope that those of you who decide, or have decided, to take Accutane will have the results that you are looking for. I would advise you to take a mental note of who you are now, and if you start to make changes or do things youad never even thought of, re-evaluate the situation and let your Dr. know. Also, listen to your loved ones because you might not realize if you feel any differently (I know I didnat). They know you best and will probably let you know if youare acting like youare usual self.
Best of wishes,
-Melinda
Here's my story, I am a 25 Chinese male who started having acne back in high school starting at age 16. It was pretty bad inflamed white pusstilus type of acne. It would only appear on certain zones of face and then migrate to another section to propagate.
I was depressed and started skipping classes sitting in the stairwell by myself during lunchtime and waiting for time to pass me by. I started to avoid my friends due to my large pimples.
So my mom went to the derm with me and the doctor provided me with a prescription for 40mg of Accutane. I started to clear up very well and was spotless within a couple of weeks. I believe i took this for about 3 months. During those 3 months my lips were dried, very dry skin, painful joints.
After 3 months my derm stopped medication seeing that I was clear. I felt great at that time and had all the confidence in the world.
But this did not last long when my acne started to come back but in smaller numbers.
Present day.
The most damaging effect Accutane had on me was facial skin thinning. I use to have a normal looking face. I now have or had acne on every part of my face, literally. In the present day after about 2 years from taking Accutane, I noticed that parts of my face that use to have red spots are now scars. I also noticed that my face is kinda deflated, as if someone took about 50 percent of the collagen out of my entire face. My face just doesn't look normal at all and I have strong evidence that it was of Accutane.
Other side effects are dry lips, dry skin, dry eyes, Back pain, Facial skin thinning, shortness of breath, depression.
My recommendation on people are are contemplating on starting Accutane. DON't
You may be having a lot of acne now, but would you want to live with the symptons listed above for the rest of your life. Acne is just temporary but Acne scars are for the rest of your life.
i took accutane around 2 years ago and still have negative side effects, which i presume are going to be permanent. some of the side effects i still suffer from are impotence, muscle and joint aches, dry eyes, dry scalp, hair loss, oh and it gave me rocasea. to make it worse, it didn't even work to get rid of my acne. fuck accutane.
I have similar side effects 13 years later so yes I think they are probably permanent , for your dry eyes try fish oil I use Carlson's fish oil which is vitamin A and D free (says it on the back of the bottle), very important to take this type of fish oil as the last thing we need is more Vitamin A in our body , accutane is basically a synthetic for of vitamin A it's a poison and should never be given to people for acne maybe for cancer yes but not for acne which is harmless , it is just a cosmetic condition that can be treated with much safer alternatives , the fish oil has made my eyes 100% better , it is also good for joint pain , and lowering cholesterol among other things... I hear that there are a lot of people suing Roche for there poisonous drug , maybe we should start a class action law against them for the millions of sufferers around the world like us...
Pete
So a few months ago I never thought I would be posting here, but here I am with my negative Accutane experience. Sorry, I like to write a lot.
To start off, I am a 19 year old female, college student, in awesome health. The only thing that sets me back is my rough, ruined acne skin on my face. I've always had a pimple, but it didn't really get too bad until I started college. This past year it has gotten particularly bad with the cystic acne and it has been so hard for me to put myself out there. My confidence level SUCKS. It took me a while to get myself to go on Accutane though. I fought with dermatologists and really made sure that I tried absolutely everything that I could afford before going on Accutane. After a while I finally realized that the dermatologists were right: nothing else was going to work for me but Accutane. I'm sure many, many people have been in that same boat. I've seen it work miracles for people, and my cousin, and I knew that it would work for me too. So I finally gave in, even though I was still a little scared.
I started on 40 mg. Within one week, I noticed a HUGE difference in my face. Awesome! I was so excited. The dry lips, skin, and scalp were annoying but tolerable. I was noticing a funny pressure feeling in my head along with some tiredness from about day 4, but I thought nothing of it, just that I needed to drink more water. Slowly I was starting to notice that my eyes were becoming a lot more sensitive to light, especially when driving. Fast forward to day 17. I woke up in the middle of the night with my left achilles tendon THROBBING IN PAIN. I had a friend's dad who is an orthopedic surgeon look at it, and he said it was tendonitis. It was red on the outside and swollen. For about 3 days I could not walk at all and just had to rest and ice my leg. I immediately stopped the Accutane the day I felt the pain. I was upset that I had to stop, but my derm told me to get my blood test just in case I were to go back on, and come back in 3 weeks.
Within those 3 weeks I became very depressed. I was breaking out horribly without the Accutane. At first I thought to myself, well if this stuff is enough to keep me from walking, so I probably shouldn't take it. But then I thought, maybe 40 mg was just too much for me. If I lowered my dosage, maybe I would not have the tendonitis problems. I even found a case study in a dermatology journal called "Acute Achilles tendonitis following oral isotretinoin therapy for acne vulgaris" by Bottomley and Cunliffe. I was so amazed that I was actually able to find a study specific to achilles tendonitis. In the article 3 people had the exact same problem as me, but when their dosage was lowered, they were able to tolerate the accutane and their symptoms subsided. So I wanted to give this a try.
I went to my derm after the 3 weeks. He wanted to give me Bactrim, saying that he wanted to give my tendon some more time. I explained to him that Bactrim doesn't work for me anymore (he should have looked in my file and known that), and I thought he was just trying to suck more money out of me. So he said okay, I'll put you on a lower dose of the accutane, but if you feel any pain you NEED to stop and call me.
So I took my 20 mg pill for the first day. About an hour later, I started to get this funny feeling in my head. The familiar funny feeling I got while I was on the 40 mg. But I kind of forgot about it because I was so concerned about my tendonitis. This funny feeling was a feeling of pressure in my forehead and the top of my nose. No pain, no other symptoms, just pressure. I took the 20mg for 2 more days, and the same thing happened each time. I was starting to get very concerned and suspicious, so I told my derm, and he told me to stop the medicine. I was DEVASTATED. I cried all day long. But I listened to him. This feeling in my head was just not right.
About 2 days after I stopped the medicine, the pressure feeling was a lot worse and more widespread. It was also causing a feeling of numbness on parts of my face. It was very hard to fall asleep with this feeling. I was so scared that I would wake up in the middle of the night in a panic. My mom actually had to sleep in my bed with me lol. A day or 2 later, this thing going on was just not getting better, so I went to go see a neurologist who luckily had an opening in her schedule (this was just yesterday!) At first the neurologist was confused as to why I was there because I am this healthy 19 year old girl who had a problem with her pimple medicine. But then I showed her the side effects and it all started to make sense to her. She checked my eyes with the ophthalmoscope and found some papillidema (swelling of the optic disk). It's not too bad, but it's there. Papillidema is usually secondary to Pseudotumor Cerebri. So now I have to get an MRI in a few days. I might even have to get a SPINAL TAP. The good thing about pseudotumor is that usually when the cause is cut off, it starts to fade away and the stress done to the optic nerve is reversible.
So, in a nutshell, I was only on Accutane for a total of 20 days, and I was not on a very high dosage, but I had very severe and probably the rarest side effects. When I look back on it, I feel stupid about going back on after having the achilles tendonitis, but I thought I would be able to give the Accutane one more try at a lower dosage. It only took 3 days of me being on 20 mg to really stir up this pseudotumor cerebri. But the problem I really had was that on the listed side effects I really couldn't find what I had. All I had was a feeling of pressure, no pain, no visual disturbances, no vomiting etc. I didn't think what a had was a headache because I felt no pain. I thought maybe my sinuses were just being dried out. The effects listed under psuedotumor sounded so severe and I didn't have any of them. It just goes to show that really anything can happen, even if it's not listed.
All I can say is that it is unfortunate that my body is just too sensitive to this medication. I don't regret giving it a try, and I would not try to discourage other people from taking it, even though it really is toxic stuff. I'm glad that for some people it works out for them and gives them their lives and confidence back. That's what I was hoping it would do for me. What I do encourage for people is to listen to you body while you're on this stuff. Extra carefully. Tell your dermatologist as soon as something happens. You probably don't want to believe you're having a side effect or that you have to stop, but this stuff just doesn't work out for everyone. Don't go in with high expectations planning that this stuff is just going to clear you up forever and that everything is going to be perfect. Acne sucks, but now that I have been doing some research, Accutane really isn't the only answer. It may be the most effective and fastest but also the biggest risk. I wish all of you on here good luck and I hope those of you who take this medicine will take it with much caution.
Light to moderate acne , 80 mg for 2 months , long term side effects major hair loss , mild tinnitus in left ear , acne did come back but I have less now , use ONLY if you have SEVERE ACNE , and use a low dose to avoid harsh side effects , I think then it could be a positive outcome , the key is low dose and not for more than 6 months. Use Accutane as a last resort try everything else first. If you are suffering from long term side effects then try BAXYL it is a form of liquid hyaluronic acid it is (100% VEGAN) , it moisturizes the whole body , were as Accutane dehydrates the body , it gets rid of back pain and dry eyes (=
Accutane mostly was a positive thing because it dramatically improved my skin overall. but the negative things were i think it caused me to have IBS! i dont know if what i have is actually IBS, its more like an ache in my colon. i have it everyday and its quite bothersome. i read somehwere that others experienced the same thing starting several months after a course of tane.
I am a 21 year old female, and I wanted to share my story. I have had acne since I was about 10 years old, and it would range from a few little bumps to several whiteheads to 3 or 4 huge painful cysts. I pretty much constantly had blackheads also. My acne would "migrate" from my t-zone, to my upper lip and chin, and even my chest and back. Throughout the years, I've tried everything. Nothing has worked. My acne is not severe, it is moderate, but extremely persistent.
My dermatologist prescribed me Accutane. I was thrilled, thinking that this would finally be the solution. I asked her about the side effects, and she was like, "Oh, you''ll have really dry skin and lips, everything else is really rare and almost no one experiences them." My dosage was 80 mgs (I weigh 163 lbs and am 5'8.)
Negative: I didn't have any of the especially horrific side effects that many people have described; HOWEVER, after the second day of taking the drug, my hair started shedding like crazy. I was losing over 150 hairs a day. When I would brush my hair, the brush would be full of hairs just hanging over the sides. I would run my fingers through my hair and it would come out in CLUMPS. This terrified me, because I have very thin hair to begin with. If this continued over the course of 4-6 months, I would be nearly bald. My long, strong nails were breaking off painfully low also.
Positive: It made my skin and hair much less oily. My pores tightened up and my cheeks (the only place I didn't have acne to begin with) look really pretty, clear, and luminous. (They really do. lol.) I could tell it was clearing up my skin.
I had to make a difficult choice: Nice hair and acne, or horrible hair and clear skin? I ended up picking having hair, but having acne also. I am devastated to quit the Tane. I was only on it for 15 days, and I have lost about 10% of the volume of my (already thin) hair. It's just not worth it to me. I would urge anyone who has thin hair thinking about going on isotretinoin to reconsider. The risk of losing your hair is more common than the drug companies and the dermatologists say.
it just...didn't work for my face.
my back had cystic nodular whatever big fat acne, that's pretty much all gone. my face was just covered in little comedones, nothing deep or scarring, but it was there and it bugged me. accutane turned that acne into cystic acne...cleared up after a while (somewhat)...now im left with scars. lots of them. which never would have been there, at all. it turned my skin type into something completely different, ive been on since june 1st 09. it didnt cause depression or any of that but i definitely regret taking this and feel stuck right now. if you have comedonal acne, this probably isnt for you but give it a try i guess since everyones different. Good luck everyone, i know how much this sucks