I am in terrible pain as I type this e-mail because I have done more than I should have today. I live with daily pain as a result of Accutane (an acne medication). I was completely healthy without a bit of trouble until 2001 when I took this med for 3 months. I was a nurse working full-time and taking care of 2 small children at that time. It started with my lower back and progressed to all the other joints in my body. I actually had back surgery hoping it would help. Upon a second opinion, the doctor told me I should have never had the surgery in the first place. The surgery made me worse. I, too, have hip pain. There is a girl on one site that is 26 years old and has had 2 hip surgeries because of Accutane. Surgery does help some people, like my mother. I had my lower back fused, and I think that is where I messed up. Also, I realize now that it was the Accutane, and I would have had pain regardless.
My symptoms mimic rheumatoid arthritis. I have pain all up my spine and all the other joints in my body. I cannot work full-time any longer. When I do work for a few hours, I have to take pain meds and lie down for a while. It has destroyed my ability to be an active mom. I used to swim, bike, and anything else that my family and I decided to do. Now, that is over.
It has been 8 years for me. I have found that Celebrex and Ultram help so much. I take them both in the morning as soon as my feet hit the floor. I used to wait till I was in excruciating pain before I would take anything, but I just about lost my mind. I decided that taking meds was better than being crazy. I was afraid people would think I was some kind of pill head if I took pain meds. I fought it tooth and nail. I lost.
Now, I don't want you to think that I have one foot in the grave. I am a Christian; and I try to look at the brighter side of life, like my blessings. I have learned to live with the pain. I plan everything around it, like how long I can ride in a car, how long I can shop, etc. I am so thankful I can walk, although it is only for about 45 minutes at a time.
No doctor can tell me anything. They all say they don't know enough about the med to comment. This really makes me angry. Why do doctors prescribe meds they don't know enough about? The doctor who prescribed it stopped it as soon as she knew I was seeing a neurologist for my back. She said it could cause back pain. She never elaborated on the issue, so I just let it go. But, when my symptoms engrossed my whole body, I had to ask myself what in the world could have happened. The only explanation was the Accutane. You don't go from being completely normal to constant pain all over your body in 3 short months.
I finally went to a rheumatologist, and he told me he remembered Accutane causing low back pain when he was doing his internship. Unfortunately, there are no tests to prove the pain. Doctors probably think we (the ones who suffer from this) are imagining the pain. I tell EVERY doctor I see that the Accutane did it, so they will heed giving it to others. We must get the word out!
There are other sites where hundreds of people tell the same story because of Accutane; askapatient.com is just one of many. Has anyone else on this site experienced this from Accutane?

Not back pain, but my son had some very noticeable concentration/depression issues while on it. Enough to make him concerned as he just didn't feel right and knew something was wrong.

He was fine again shortly after he discontinued using the Accutane.

I hope you are able to find some relief.

Joe I am truly sorry to hear about your experience with accutane. But I took accutane for 6 months and had to stop when I found out I was pregnant with my son. I think you just had an awful reaction to the drug. Short of death I would have to say it was an overall tragic mess that accutane caused you.

I am not sure how many trials accutane went through before it hit the selves for consumers to buy it up so quickly and how qualified these doctors are that per scribe it. The saddest part out of all this it really just comes down to money being put into these drug companies bank accounts @ the expense of the patient.

Fyi
I had no adverse affects from taking accuane my only problem was chronic dry peeling lips.

I do have the same problem, I do have back pain right now after I stooped using accutane and my shoulder joints hurts me a lot. I went to my doc be couldn't find any problem, and I'm pretty sure that all the pain is from the accutane, I workout 6 days a week without having any problem att all but after the accutane from the sudden I got back pain and shoulder and my elbow hurts me.
I'm 23 yrs old and used accutane for one yr 40mg/day

Joe! I have lower back pain and I am sure that accutane caused it. I didn't feel this way before and now I can't figure out what the heck happened to my body that now it's a constant pain. I also, don't know what to do anymore.

Hi, I too have been on accutane for 56 days just going into my 9th week, my skin is improving by the minutes and I am happy with that but the last two days I have experienced this sharp pain in the chest and between my shoulder blades on my back and it hurts to breathe so I am taking your advice and stopping the tablets as from now. I will see how I go but I so want to finish the course but is it worth it if I end up crippled

Yeah, I was recently on Accutane, and for roughly the last two months of treatment, I started experiencing back pains. I initially didn't think it was related to the Accutane. I had taken lower doses of Accutane three times over the course of 15 years and never had any problems except the usual dry lips. I thought it might be my kidneys, but all tests ruled that out. I experience almost debilitating pain throughout my back (especially in the middle) which is worst any time I lie down. When I try to get up from lying down, it takes great effort and I am terrified of the intense "shooting" pain I often get across the middle of my back, which literally drops me to my knees in pain, when I rise. I finished my 5 month course of treatment about 5 days ago, and there has been no relief as of yet. It has really got me scared as to what damage the drug has done, and if it will subside.

Oh, I hate to hear this. I sure hope your pain subsides. Mine never did, and it affects my life in every way. I have to plan everything around whether I can stand, walk, sit, for the amount of time planned, etc. Every joint in my body aches with arthritic-type symptoms. I take Celebrex and Tramadol every morning. That seems to help me more than anything.

It sounds to me like you, gntazman, have a pinched nerve in your back; but take my advice, and don't have surgery until you give it about a year. Surgery made me worse. I know you probably don't want to hear that. Now, with that said, if your shooting pains get worse and worse, you'll have no other option than to relieve the pressure from the nerve (provided that's the cause of the pain).

Remember this too; you can't just lie down and quit either. You have to find that balance between over doing it and under doing it. My muscles get weak and my pain gets worse if I stop being active. I remain active until I just have to stop and rest. Then, I rest a while and go again.

Another VERY important thing: tell EVERY doctor you see what Accutane has done to you. We have to get the word out, so that others won't have to endure this for the rest of their lives. Tell them to Google "Accutane and back/joint pain," and they'll see that there are countless people with the same story as ours!

Also, your kidneys wouldn't cause pain in the middle of your back. It would be more mid to lower and on each side.

I KNOW BEYOND A SHADOW OF A DOUBT that Accutane did this to me. After taking it those few months, I went from being a completely normal working mother of two to a debilitated young soul in an old lady's body. NEVER allow appearance to override good sense. I pray God will bless you all with the ability to be well again, and if not, that you can find happiness as you bear it.

I am 24 years old and took accutane last year for 6 months. I started having lower back pain two months into the treatment. I am in the Army and had a heck of a time trying to tell my doctor that I was having the pain and he wouldn't do anything for me. Mind you this wasn't my derm. But my primary care phy. The Army docs are weird about giving profiles for work related limitaions. Anywyas to make a long story short; I have been off it for a good while now at least 7 months and I still have the back pains. When I am standing or sitting for too long my lower back throbs. I was very active and find it hard to stay as active as I used to be because of the pain. I haven't went to the doctor in fear that it might have caused disc lost and I don't really feel like getting med boarded.Any advice?

Im a 15 year old girl and I've been on Isotretinoin (Accutane) for a month now. I have stomach discomfort on hot days but nothing bad. I do have eye-contact irritation though and really bad lower back pain on my right side... but my right kidney already had problems, mild dry skin and chapped lips and a little joint pain (it helps to stretch)... nothing really bad. Ive already seen an improvement on my back and chest and some improvement on my face in just a month... I would recommend it!

Quote:

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Originally Posted by jmills19

I am 24 years old and took accutane last year for 6 months. I started having lower back pain two months into the treatment. I am in the Army and had a heck of a time trying to tell my doctor that I was having the pain and he wouldn't do anything for me. Mind you this wasn't my derm. but my primary care phy. The Army docs are weird about giving profiles for work related limitaions. Anywyas to make a long story short; I have been off of it for a good while now at least 7 months and I still have the back pains. When I am standing or sitting for too long my lower back throbs. I was very active and find it hard to stay as active as I used to be because of the pain. I haven't went to the doctor in fear that it might have caused disc lost and I don't really feel like getting med boarded.Any advice?

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I hate to hear this about you. You are so young! I'm positive it was the Accutane. You know your body, and you know how you felt prior to taking it. I was an active, working nurse and mother before I took it. I could work from sun up to sun down. Now, I struggle to work part-time.

The only advice I have is to stay moving, take Celebrex, and stay close to God. If you do too little, your muscles will get weak, and the pain will increase. However, if you do too much, you'll be in terrible pain and possibly cause worse problems. I take Celebrex and Tramadol every morning now. It has made a HUGE difference. I despise the fact that I have to have meds just to be able to work, but it's a fact I have to accept. It's been 10 years since I took the Accutane, and I'm no better. In fact, I've gotten worse due to the destruction the Accutane had on my joints.

If you have any more questions, feel free to email.

Don't have back surgery, unless you are absolutely unable to walk because of nerve damage. I had surgery and shouldn't have. My joints are the problem. You have joints in your back too. A large percentage of folks over 30 have bulging discs that never give them trouble. It happens with age. Anyway, surgery DOES NOT RELIEVE LOW BACK PAIN; it only relieves pressure off nerves that will relieve nerve pain, usually in the leg/foot.

Hi, wow... this is very similar to my story. I would love to talk to you. I feel like I have no one I can relate to with this. I was forced on accutane at the age of 15 by my father. He insisted, regardless of me reading the warnings and feeling this was a really bad idea, I tried to disregard this and just take it as my father kept insisting nothing would happen. Three months later or so I had the worst pain in my spine and back muscles and have never been the same. It took away everything. It created a hell for me and ruined my life. I am now 26 years old. I have lived almost half my life now with this.. I don't know how, because things have not gotten better. The pain has been the same the entire time.. and I've basically lost my mind going through this over and over again. Being in disbelief that it really was the accutane because it caused me so much pain to believe this was true. I didn't want to believe it no matter what because that meant that my father caused all of this.. he ruined my life.. I know he had good intentions trying to help with acne. But I at the time was strongly against it and did not trust it. I have been hooked on painkillers, gone through so much pain.. unable to continue school barely graduated high school and was never able to hold a job because of the intense pain. I had to give up playing music and everything I had been driven to do and wanted in my life.. everything was overshadowed by this horrible pain that I could do nothing to fix nothing to help. . Fought my absolute hardest tried everything I could possibly do.. saw every doctor I could possibly see. Tried to find hope in anything I could just to keep going! If I think about this now I still find it hard not to be in denial over as the truth of this is just too detrimental. I was completely fine before this.. excellent health, no pains.. everything in the past that caused pain would qiickly subside.. I thought when this pain happened sure it'll go away fast its just like any other.. it didn't.. I tried to do everything I could not to point to accutane.. but that's the only thing that makes sense. I have had no diagnosis.. nothing like cancer that people are aware of and give support for. Nothing to help get me through.. completely alone fighting this all this time. Posted on message boards like this in the past but with no help or other people but now in 2011 I see there are a lot of other reports similar to mine. And I can empathize with the same frustration with doctors and having no diagnosis and pain that is just intolerable but you're forced to keep going trying to survive because you want to live! I just wanted to be normal like before this... even at this age after all this pain and everything I've lost and basically being in the same position as at the age of 15.. I would be happy if things were normal tomorrow.. if the pain was gone I would be able to take all of this emotional pain and hell I've gone through and all the repercussions that absolutely ruined my life.. and just be happy that the pain was gone and move on and deal with it. Start over.. but I can't even have that.. I have no answers and no support even from my parents, they've only made it harder for me throughout all of this and they're the ones that insisted on this medication. Still live at my parents house because of this. Gone through unbearable pain and just kept on going fighting as HARD as I posisbly could.. gave my everything.. all my focus energy drive had to go to battling this pain.. everything had to be put into fighting this.. every little facet of me and beyond had to go into this and I have nothing to show for it after all these years.. and even still am sort of in a back and forth denial about the accutane causing this. In order to survive and keep going I've had to sort of be in a denial about it to feel OK enough to keep going. I want anwers I want a solution.. I even got through being on all these painkillers and eventually building a physical addiction and withdrawals.. and the withdrawals got so bad the almost oveshadowed the pain. I feel hopeless and lost and please anybody that may be able to help me cope or deal with this in any way.. any help... I would greatly appreciate.. I am just completely lost and its crazy still saying the same things I was at 15.. I had to give up my entire life that was very promising and a lot of talent being a musician.. everything I once loved.. everything I had and at 15 my life was only just starting.. turned it upside down.. and I've never been able to be remotely close to putting it back together. I am broken.. and I have absolutely no idea what to do.. I still to this day have no sympathy or support from my own family and parents that are to blame for this. It drives me crazy! Which is why I have to be in denial about it in order to go on.. but right now I'm not and its hurting like hell.. emotionally and physically.. I don't know what to do.. I'm on Facebook - my name is Randy Reisig.. please search and add me, write me.. best chance of getting in touch with me. My email is [email protected] or gmail but Facebook would make it so the emails aren't put in spam or anything like that.. please contact me. I would like to meet others who have been through similar ordeals with this.. I am not exaggerating.. in fact my words are basically meaningless when it comes to the amount of pain and hell I've been through with this.. there are no words to describe the hell that my body and feeling became, writing this is very frustrating and its soooo hard to deal with.. the pain itself beyond all that has happened as a result is still the worst thing of all and I still have to deal with it every day.. everything that was normal before.. I see in pain now.. everything people take for granted like sitting down.. laying down.. being comfortable.. relaxing your body.. I have been unable to do that since this began.. it felt like my body had permanently changed.. my bones and muscles and the way I feel completely turned upside down.. lost.. I go on and on describing and none of it can express how painful and how horrible everything has been and having no solution nothing to help... I have been suicidal since this time back and forth over and over.. seeing no way out.. just trying to deal with this being my life.. this way of feeling and being in this much pain as a normal every day thing.. I still remember the way things felt before this happened.. I am a very strong person. I wouldn't be here even one year after fighting this if I was not. I believe 99 percent of people would have killed themselves after experiencing this for a year and having no way to fix and win fighting this. And to be here almost half my life after this.. its insane.. I've put myself through so much pain.. in trying to deal with and overcome this.. and I have been unsuccessful.. I'm still here.. but my life has not gotten better.. I've fooled myself into going on trying to find the worth of conitnuing in anytihng.. if I do not fix this pain.. and this is with a compeltely healthy normal looking body.. completely healthy.. prime ages throughout all this time.. the time of my life I would surely not have pain or any kind of pain that would affect me so badly. This is the only thing that makes sense, the accutane.. and I am dying to not believe it but it's the only thing that makes any damn sense throughout all of this. Please.. anyone that can help me go on and deal.. maybe meeting some of you that have gone through the same would help me somehow.. I am desperate for answers.. desperate for some sort of solution.. anything.. the hell I've been through.. the inability to do all the things normal people have no problems with.. feeling the most immense horrid pain just from sitting.. I can not sit down, can barely tolerate lying down.. anything any pressure against my back and bones the pain is unbearable. Even clothing affects what I feel.. I lost everything because of this. And before I was even able to live my life.. before I was even able to start my life really at 15 this all happened. And with no support or anyone to talk to that would help me. It absolutely kills me.. the pain and the reason for the pain and everything I have lost because of it. I would do anytihng to have my life back.. anything to just feel things normally again without pain that takes the joy out of everything.. and this is coming from a very strong person.. in every way possible. Emotionally physically.. intellectually.. nobody knows my story.. and I've felt like suicide was going to be the only way id ever get rid of this pain since just months after feeling this and having no relief.. think about how that has to be.. being in such horrible pain.. ruining your chances of doing anytihng normal.. or remotely normal.. being stuck in bed basically since this age.. and with a normal healthy strong body and from the looks of it I still look healthy and strong. But the way my body feels and the pain I have efelt is not at all normal and I hope that there is some way that I will be able to go on.. and I want my story to be told as well and for people to know and be aware of what has happened and have some sort of support and any sort of help or answers.. I lost everything before I even had a chance of putting all the potential I had as a human being to use.. my life was ruined after this.. well I'm just going in circles talking about this.. as you can see its affected me tremendously and taken a HUGE toll. I don't think I will survive this in the end. I do not want to end my life, I want more than anything to just be without pain and be happy. The last thing I want to do is that. Yet even all these years after I still feel hopeless in finding an answer. I can absolutely say that my life has not been worth the amount of pain I've been through. I have nothing to show for all that I've been through.. the amount of energy I've wasted.. the amount of everything I've wasted on this pain.. everything I've lost because of it.. I hope that I do find some way to continue and some kind of answers.. and soon. I just don't know how much longer I can go on living this way.. its no life.. its barely surviving and in a horrible way.. horrible! :(
I am a good person and I've done everything I could to be normal and put this out of mind, anything I could to think differently feel differently anything and everything beyond beyond of what I thoguht I could tolerate. And for what.. just to get through another day and night and wake up feeling the most immense and intolerable pain yet again. 11 years like this.. 11 years of my life that are supposed to be good times.. a time of your life where pain isn't an issue.. pain became my life and since 15 its become everything. Blah.. yeah I'm just going on and on saying similar stuff. You get it.. you know what I'm saying.. its been terribly difficult.. I just can't express how much I can't express in words how hellish its been.. and I'm at a real loss in coping with this.. and the reality that accutane something I was against taking and knew better even at this age.. it kills me knowing what could have been.. what once was and what was normal to feel for me became this horrible abnormality. I just can't express it enough.. the degree I've been pushed. Forced.. absolute hell. Il just stop now.. but please anybody.. contact me.. tell me your story if you have one as well. Please. Facebook - randy reisig. Peace and love and I wish anyone that has been going through something similar to me the absolute best in continuing and I hope that we all can find some answers and a way to live happily. But I need to figure this out and something has to happen immediately to help me. I want to live and live with tolerable pain.. just anything to make my life possible again. I am at a loss for words here.. and stopping.. I don't know.. its been so hard. Just got to stop typing now.. damn.. :(

hi joejoe2x4,

in regards to your post, I am confident that your not the only one, I believe that who ever is on accutane (isotretinion) or was a previous user 99% chance of receiving the joint pain side effects. I'm in my 20s, its has been 5 years, I had vigorous pain in the lower back, was able to control the pain be doing daily stretches, applying heat cream, being more cautious of my daily task especially when bending over.

I truly would understand and feel your pain, I too regretted going on this drug, unfortunately at that point in time I made a rush decision, and assume that the side effects is just temporary ( I was being assured by the words of my specialist, they too said it would go away) damn I hate them, they were wrong! I was silly, cause the body warned me, it gave me first symptoms such as dry lips, dry hair, etc... I am so stupid, after the stupidness, I got punished with side effects.

Being a guy sharing an experience regarding health is not common, but when the person itself is affected, it doesn't matter whether you're a girl or boy, your whole perspective changes.

I went from an active person with an abundant sense of humour, outgoing attitude to a mature serious health concerning person. The health system is not always right, you get sick, you go see a local doctor, if he unable to help you out, he refers you to a specialist.

Unfortunately, in my country Australia this is how the system works, so its going to impact on many thousands of teenagers in Australia with acne will follow this system, following this system they will end up taking prescribe accutane from their specialist.

There's nothing much to stop the manufacturers distributing this drug, unfortunately most countries like Australia, England, USA, Ireland has given approval to the Roche company to prescribe the pills to people.

The only thing you could do is to inform your local community,friends, relatives, and online forums not to take it, and choose an alternative path such as herbal remedies.

My last words for you, if you are reading this, the only option left to treat these side effects I believe is to take herbal medicine, see a chinese herbalist, go on strict healthy diet, try taking glucosamine, fish oil, bio tin, apply heat cream on pain areas, do yoga stretches, drink green tea, eat food that has high in antioxidants, steam your vegetables, have extra virgin olive oil they have choke full of antioxidants. Chinese cupping and accupuncture effectively and instantly reduce pain on back. Hope this really help, I still got the side effects, however my mind is healthier, my internal body is slowly recovering, its like a person smoking and decided to stop as he/she want to be in 100% good health. And the doctor says it would take up to 13 years for the body to repair.

Now lets hope this is not long term, I am determined to live healthily, and pain free! So join me, think positive, stay strong, overcome the fear, educate and learn about nutrition, vitamins, minerals, herbs especially! I can brag on and on, at times you can feel so stuff, but remember willingness conquers everything, lastly all the best in health in the next upcoming years! Cheers!

I took it in 2001, and, unfortunately, my symptoms have only gotten worse. It's been over 10 years. I have learned to live with the pain and try to be happy with the Lord's help. Thank you for posting. I like to read what others have experienced. We MUST get the word out about Accutane; hopefully it will be taken off the market some day.

Hi Joe,

Did you by any chance also get hair damaged/loss as a side effects? Or just joint pain?

Also, since you have experienced longer pain than me, what was the most effective medicine to help you reduce the back pain mostly?

Thanks.
Tim

Tim,

I've had multiple symptoms. Thinning hair was evident soon after taking the Accutane. I'm actually female, so it was upsetting to me. Mine isn't horribly thin, though. I can still hide it, as long as I have shorter hair. I can no longer have long hair the way I always liked to wear it.

I also have a bladder disease called Interstitial Cystitis. The lining in my bladder was affected by the Accutane, I'm guessing like the colon lining that others have had problems with. Boy, I thought I was going to die there for a while. The pain was so bad I couldn't sleep. I had a surgery to stretch the bladder, and I immediately stopped drinking sodas. I still have problems with drinks that contain caffeine, but my bladder is a lot better.

For the first year, I fought tooth and nail not to take pain meds, unless I was about to die. But, I had no quality of life. I was miserable and crying all of the time. So, I began taking Celebrex 200mg one daily and Tramadol 50mg two tabs with the Celebrex each morning. That lasts for a good part of the morning. Then, after lunch, I take Lortab 5/500 one tab and Baclofen 10mg one tab together. If I need another dose in the evening, I take only one more. There are times that these meds just do not eliminate the pain, but I refuse to increase the strength. I'm so against drug abuse, and I'm afraid of falling into the trap that so many true pain sufferers fall into. It begins as an honest thing, but they just keep increasing the meds till they're so addicted. Remember never to do this. When the pain is unbearable (and it is a good part of the time), I simply go and lie down for about a couple of hours. That helps a lot. I know my limitations. You will have to know yours as well.

I have a TENS unit too. I LOVE IT!! This is the little machine that has electrodes that you place on your skin, and it delivers an eletrical current into the muscle. It's wonderful, and your doctor can write you a prescription for it so your insurance will pay. If you like it, you can have one surgically implanted in your back. I would like to do this; I just haven't mustered up the courage yet.

Another thing that will make you worse is doing nothing or very little. There are days that I just don't feel like moving, but the more I sit or lay, the worse the pain gets. Find a good balance of activity and rest. If you have more questions, just ask. God bless you as you find your way.

Hi Joe,
Thanks for your reply, am keen to keep in touch to update you with my health. After reading what you said, your situation really scares me, I have a bad feeling too about my internal body. At times I sleep longer than usual, feel very dry inside. Hair loss was very disturbing, had to shave the split ends monthly to look even. At times I feel so angry I wish I could strangle Roche and pluck all his hair out so he would understand the couple years of pain. My knee, ankle, wrist occur frequently, it clicks, rubbing sound now and then throughout the day. Take a long good rest really does help, feels so good to be on a bed. Sometimes I get wonderful dreams where I had pain free, and was running all over the place, looking back the memories before medication, I had a good time running.

At the moment I am taking cod liver oil, as it claims to maintain healthy eyes, skin and bones, its been two weeks now, I don't really feel much different, I also take lime, lemon and ginger heard that reduce pain too. So sorry haven't had any success so far, the remedies was helping temporarily.

Will update you again soon.

Sincerely,
Tim

Yep, my joints pop and crack like an old lady, hips, wrists, toes. My knees sound like bone rubbing bone. I'm afraid I'll have replacements before too long. A friend of my daughter's took Accutane when she was a teen, and her joints crack too.

Hi, I did 2 courses of accutane about 2-3 years apart. That was about 5 years ago. Since then I have had chronic achilles tendinitis, foot, knee and hip and back pain.
Sometimes I can hardly walk up a flight of stairs. I work at home but some days the pain is so bad I am almost in tears by the end of the day. I don't like pills so I only take tylenol arthritis on my very worst days. Since I look perfectly healthy from the outside I think sometimes people think I am nothing but a complainer if I say anything. Accutane ruined my life and the pain is getting worse, soon I may be unable to work at all. There are mass law suits against the accutane company, I plan to look into this.
Liz.