joint pain

[Danielle]

wendy wrote:

to all of you who have experienced adverse side effects from accutane:
My 11 yr old daughter has been taking it as a type of cancer drug, but her side effects have suudenly gotten worse than her original chemo drugs. After starting her 4th course several weeks ago (2 wks on-2 wks off) suddenly her legs and joints began to hurt. The pills were stopped several days before the 2 wks were up this time (I'm sure now they should have been stopped before that). She can't even walk on her legs right now. She took massive doses for her weight.(160mg/day and she only weighs 54 lbs.) If her MRI looks the same by this weekend, we know it's the accutane to blame, and I believe my husband will have a lawsuit against the company by next week. What I keep reading about this drug just keeps getting worse and worse!!!!

Wow! That's an incredibley high dose for 54 pounds!!! I weigh 125 and 20 mg every other day is too much for me. I wish there were something else they could give her instead :( I feel really bad. I hope she has a speedy recovery.... but once she stops the pills the symptoms will go away.

[wendy]

to Danielle:

Thanks for responding, but she hasn't taken any accutane for 8 days and the symptoms don't seem to be getting any better.

[Danielle]

wendy wrote:

to Danielle:
Thanks for responding, but she hasn't taken any accutane for 8 days and the symptoms don't seem to be getting any better.

Well i guess it will be quite different for her since she was on such a high dose. But from my experience (i had joint pain in my knees, ankles, neck, wrists, elbows, and legs, blurred vision, hair loss, fatigue, and muscle pain.... this was from 20mg per day) My symptoms began clearing up a few days after stopping and luckily I am now symptom free... of couse maybe it could have to do with the fact that I began taking glucosamine supplements twice a day (Osteo Bi-flex brand) and continued for a little while after I stopped the tane. That stuff help me a LOT with joint pain.

[Cyia]

I am 36 years old on my second round of accutane. I first took it back in 1996, and my results were marvelous. Unfortunately, the oil and acne came back within a few years--mildly at first, then after three pregnancies, it graduated severely. I'm experiencing the aching joints in my hips and knees, but am coping by walking the track every day. This is not only helpful for my joints, but it's helping me shed unwanted pounds. I'm not on any pain meds, and hopefully, I won't have to go on any. I'm into my second month, only taking 20mg twice daily. Again it's proving to be a miracle drug for my acne when all the other prescription meds failed.

I'm married w/ young children, and for me personally, the acne (because of its severity) was MUCH more crippling to me than enduring moderate joint pain. I was embarrassed to even go to the grocery store or church because it got so very bad! Weighing the risks, the 'tane wins hands down, because the alternative--possibly lifelong, disfiguring, cystic acne--has a way of making a person feel less than human. Even more for a young woman like myself who has been affected by this disorder since adolescence. I agree accutane isn't for everyone, but for me, it's been a Godsend.

[Julian]

I'm 26 years old and I've been using Roaccutance for about 3 and a half months already( Its a four-month treatment) Only three more weeks to go! Started of with 50mg/day the first two months and now I'm on 40mg/day. My dermatologist's three big NOs before starting the treatment were No pregnancy! No sun exposure! And no excercise which sucks bc I'm addicited to my sports.
But apparently one can risk serious muscle injury if they exert too much pressure on their bodies.

The first couple of months, however, I ignored the last warning and took up dance classes twice a week. I noticed that my muscles were always in pain, and decided eventually to stop. I don't suffer from muscular pain anymore.

I do however have this mild joint pain, shoulders one of them, and right above the heel below the back side of my ankle everytime I get up to walk. He said that joint pain is not one of the side effects and that it might be something unrelated.

I'm not sure about this.After reading this forum I feel a little worried that this might be related and I hate to think that it might be permanent.

Any suggestions on what kind of tests or scans I can do in order to find out what the problem is and how to resolve it?

As for moods, I am generally a moody person, but lately my moods have been out of control. That side effect is a certainty. Still I try to constantly remind myself that most of it is induced by the medication.

Anyhow...any suggestions with regards to the joint pains and all would be much appreciated.

thanks

[Pisces66]

I am 43 years old female. I developed nodular cystic acne on my cheeks (sudden onset) last september (08). I tried a couple of different anti-biotics but they didn't work. I was then referred to a dermatologist. He recommended Roaccutane but I resisted for a couple of months. I started on a 20mg pd dose last NOvember, increasing gradually to 60mg per day in March 09. Initially I thought I had gotten off lightly with few really bothersome side effects (dry eyes, lips and the inside of my nose). Then in early April 09 the joint and muscle pain kicked in. My heels, knees, back, ribs, wrists, fingers, sitting bones - all ached unbearably. Ibuprofen, paracetamol did not work. Nor did Xydol which my GP prescribed. Walking for any length of time was impossible, I was crawling upstairs and getting up from sitting position was very painful.I was walking like an old lady, and sitting was also painful for my hips and sitting bones.
My GP told me to give it a few weeks after finishing the course to see if the problems improved, they just got worse. I had to see a podiatrist about my painful heels and now can only wear trainers because I have to use a specially fitted footbed to support the ligaments in my feet and ease the pain. I am also seeing a physio and they have diagnosed tendonitis at several points in my body. I have digestive problems and a stitch like pain in my right side between the bottom of my ribs and my hip bone. My six year old asked me if I was disabled last week! I think I may have calcinosis - does anyone else have a positive diagnosis for this following a course of roaccutane? I also think my dose and the length of the course were wrong. I weigh 53kgs and was on 60mgs per day for two months. I started on 20th NOvember 2007 and my derm atologist wanted me to continue until 8th June 2009 but I could not stand it anymore and took my last dose on 8th May. I have a full time job, four kids and a dog to look after, but I am getting to the stage of not even being able to face waking up to the pain in the morning. I wish the side effects had been more clearly explained - I don't accept that 1/10,000 is the correct statistic for musculoskeletal problems as a result of this drug - there are so many forums with negative comments that the indcidence of these type of problesm must be statistically higher. My relationship is suffering too, because I now always seem to be tired, in pain, unable to do even the normal household chores without a struggle. I am going to try the milk thistle and the glucosamine supplements mentioned on this formum and see if they work. Also I am now anaemic, which I believe is a side effect of the drug too. I have been tested for rheumatoid arthritis, because the doctor was so horrified at my level if pain and stiffness but thankfully that came back clear. My advice is for people to try this only as a complete last resort. My dermatologist even told me "this is the drug CAmeron Diaz takes". My acne has cleared up and I have clear skin again, but I am a cripple.

[oli girl]

Pisces66 wrote:

I am 43 years old female. I developed nodular cystic acne on my cheeks (sudden onset) last september (08). I tried a couple of different anti-biotics but they didn't work. I was then referred to a dermatologist. He recommended Roaccutane but I resisted for a couple of months. I started on a 20mg pd dose last NOvember, increasing gradually to 60mg per day in March 09. Initially I thought I had gotten off lightly with few really bothersome side effects (dry eyes, lips and the inside of my nose). Then in early April 09 the joint and muscle pain kicked in. My heels, knees, back, ribs, wrists, fingers, sitting bones - all ached unbearably. Ibuprofen, paracetamol did not work. Nor did Xydol which my GP prescribed. Walking for any length of time was impossible, I was crawling upstairs and getting up from sitting position was very painful.I was walking like an old lady, and sitting was also painful for my hips and sitting bones.
My GP told me to give it a few weeks after finishing the course to see if the problems improved, they just got worse. I had to see a podiatrist about my painful heels and now can only wear trainers because I have to use a specially fitted footbed to support the ligaments in my feet and ease the pain. I am also seeing a physio and they have diagnosed tendonitis at several points in my body. I have digestive problems and a stitch like pain in my right side between the bottom of my ribs and my hip bone. My six year old asked me if I was disabled last week! I think I may have calcinosis - does anyone else have a positive diagnosis for this following a course of roaccutane? I also think my dose and the length of the course were wrong. I weigh 53kgs and was on 60mgs per day for two months. I started on 20th NOvember 2007 and my derm atologist wanted me to continue until 8th June 2009 but I could not stand it anymore and took my last dose on 8th May. I have a full time job, four kids and a dog to look after, but I am getting to the stage of not even being able to face waking up to the pain in the morning. I wish the side effects had been more clearly explained - I don't accept that 1/10,000 is the correct statistic for musculoskeletal problems as a result of this drug - there are so many forums with negative comments that the indcidence of these type of problesm must be statistically higher. My relationship is suffering too, because I now always seem to be tired, in pain, unable to do even the normal household chores without a struggle. I am going to try the milk thistle and the glucosamine supplements mentioned on this formum and see if they work. Also I am now anaemic, which I believe is a side effect of the drug too. I have been tested for rheumatoid arthritis, because the doctor was so horrified at my level if pain and stiffness but thankfully that came back clear. My advice is for people to try this only as a complete last resort. My dermatologist even told me "this is the drug CAmeron Diaz takes". My acne has cleared up and I have clear skin again, but I am a cripple.

Yep, same here, chronic pain. You should have your hydroxy25 Vit D levels checked. I would suggest also to have a bone scan. I was found to have severe osteopenia 2months after accutane. I even shrunk. If this comes back okay it probably dried up your joints.
I would either suggest looking at Ncc post regarding accutane and its mechinisms or since your from the U.K. try looking at ragfourm/roaccutane action group.

Your not alone.

[Pam]

sarah wrote:

Is anyone having joint pain or stiffness since taking accutane?

I am definitely. I have been taking it for three and a half months. My skin has cleared up beautifully, but I am very achy. I ache all over. I am stiff getting out of bed in the morning. I am getting some what concerned about this.

[Trish]

I was on accutane about 25 years ago and I remember the severe joint pain--could barely get out of bed in the morning. I could not wait to get off of it--I took it for a year or less. The joint issue went away soon after stopping the "poison". Now as a woman in her 50's, I can barely walk or stand by the end of the day--especially after exercising. I also have problems with my neck, my back, my shoulder. I also had frozen shoulder about 2 years ago which is a problem with the auto-immune system, I believe. Only now after reading all these postings am I finally able to put it all together. Some may say that achiness should be expected because I am in my 50's--I greatly disagree. I am around people older than I all the time and none of them have problems like I do with just simple activities. Stay away from this drug!