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JPOP

Accutane chronic side effects joint inflammation

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Hi 

I regretably agreed to take accutane for my moderate acne last year. I was on a 10 month course with a total cumulative dosage of 9000mg. My body weight was 73 kg at the time. The first month was 20 mg per month and 40 mg thereafter.

I tolerated the medication generally quite well. Dry lips and dry skin and I had one eye infection that went away relatively easy after taking some oral antibiotics. 

A year since stopping the medication I have started to develop scary chronic side effects that I can only attribute to accutane given my prior good health and how well documented these cases are in other users. I list these below:

irritable bowel syndrome
 chronic dry eyes and mouth
crepitus- creaking joints (may be early sign of arthritis)
fatigue 
insomnia 
anxiety
constipation
Hair loss 
heat intolerance 
bags under eyes and sagging skin 

Slight exaggeration but I feel each month of taking accutane probably aged me by a decade. i took it for 10 months. So that's a 100 years. Scary.  

I know not everybody gets these side effects and I don't want to get into a protracted debate about the pros and cons of this medication. My questions Are as follows:
a) 10 months now seems like an inordinately long time to be on this drug. What are your views on this? It seems atypical to be on this for so long. Is it safer to
be on a higher dose for a shorter period?

b) in hindsight my skin, quite frankly, did not warrant this medication and certainly for not as long as the treatment period. I had mild facial acne and moderate back acne. Can I pursue the Dermatoligist for clinical negligence? I'm uk based. 

C) the crepitus concerns me deeply. Does this get worse and worse over time or can my body eventually heal. Any previous user experience most welcome. 

Final comment; in my hunable opinion this drug is a poison that should not be prescribed unless the skin disease is of the most severe case.  The long term
risks are far greater than the short term reward. 

thanks guys!

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No level of acne  is worth the side effects  - how about painful joints and no sex for the rest of your life! not just a bout of depression but feeling sad for the rest of your life. What would you do if side effects like these could be as high as 30% or higher? ~DO NOT EVER TAKE ACCUTANE!!!!

Edited by hatetane
wrong word

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1 hour ago, hatetane said:

No level of accutane is worth the side effects - how about pain and no sex for the rest of your life! What would you do if side effects like these could be as high as 30% or higher?


What about a red faced pull of cysts that bleed and hurt your face, ruin your self esteem, never going out the house?. Life sucks either way, not everyone gets those side effects. life is going to pass you by if you decide to stay inside all day because of your acne. You are only young once. 

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15 hours ago, JPOP said:

Hi 

I regretably agreed to take accutane for my moderate acne last year. I was on a 10 month course with a total cumulative dosage of 9000mg. My body weight was 73 kg at the time. The first month was 20 mg per month and 40 mg thereafter.

I tolerated the medication generally quite well. Dry lips and dry skin and I had one eye infection that went away relatively easy after taking some oral antibiotics. 

A year since stopping the medication I have started to develop scary chronic side effects that I can only attribute to accutane given my prior good health and how well documented these cases are in other users. I list these below:

irritable bowel syndrome
 chronic dry eyes and mouth
crepitus- creaking joints (may be early sign of arthritis)
fatigue 
insomnia 
anxiety
constipation
Hair loss 
heat intolerance 
bags under eyes and sagging skin 

Slight exaggeration but I feel each month of taking accutane probably aged me by a decade. i took it for 10 months. So that's a 100 years. Scary.  

I know not everybody gets these side effects and I don't want to get into a protracted debate about the pros and cons of this medication. My questions Are as follows:
a) 10 months now seems like an inordinately long time to be on this drug. What are your views on this? It seems atypical to be on this for so long. Is it safer to
be on a higher dose for a shorter period?

b) in hindsight my skin, quite frankly, did not warrant this medication and certainly for not as long as the treatment period. I had mild facial acne and moderate back acne. Can I pursue the Dermatoligist for clinical negligence? I'm uk based. 

C) the crepitus concerns me deeply. Does this get worse and worse over time or can my body eventually heal. Any previous user experience most welcome. 

Final comment; in my hunable opinion this drug is a poison that should not be prescribed unless the skin disease is of the most severe case.  The long term
risks are far greater than the short term reward. 

thanks guys!

People like you are a problem, 

" b) in hindsight my skin, quite frankly, did not warrant this medication and certainly for not as long as the treatment period. I had mild facial acne and moderate back acne. Can I pursue the Dermatoligist for clinical negligence? I'm uk based."

Bullshit, you had a personal choice, nobody forced you to take isotretinoin and also your doctor certainly gave you a phamplet with all the possible side effects. Now what is most disturbing is you saying your acne didnt warrant the medication.... by making these stupid half-assed claims you are making it harder for everybody else to go on isotretinoin for their Acne that is more moderate/mild. I believe all acne warrants isotretinoin if you make the personal decision to take it, if you had mild acne you should have taken a lower dose but honestly cumalitive dose of 9000 is not really that high for your weight. This medication yes is toxic and causes damage but at the end of the day you had a personal choice, its like taking suicide but then saying my life did not warrant suicide.... makes no sense! For all those with persistent Acne wheter its mild or severe, isotretinoin as of right now is the most effective treatment and the side effects imo are always overhyped. 

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Thanks for your input. No need for the aggressive tone. My aim here is not to discourage or prevent people who want to take this drug. I'm interested in the liability nexus based on a misprescription. 

 

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20 hours ago, JPOP said:

b) in hindsight my skin, quite frankly, did not warrant this medication and certainly for not as long as the treatment period. I had mild facial acne and moderate back acne. Can I pursue the Dermatoligist for clinical negligence? I'm uk based. 


Hi. Sorry to hear you are having problems.
Honestly I don't think you'd be able to show clinical negligence here. Your dr would have to have been acting totally outside the norm of a respectable body of medicine, and pretty much treated you in a way that no other doctor would have. Your cumulative dosage is right in the middle of normal max and min dosage, and 40mg a day for majority of your treatment is... pretty middle of the road. Even if you find a dr that said 60mg for a shorter time would have been safer (I'm not saying I think you could, but hypothetically) this would not show negligence as your dr is not held up against the best, most expert, cutting edge dr out there, the standard is more like 'not outside the bounds of normal', and your treatment sounds, well, pretty normal.

You don't go into your history pre-accutane much, like whether you went NHS or private or other treatments you had tried. If NHS, then the fact that a GP gave you a referral to a derm almost in itself shows that your acne was either severe or resistant enough to warrant considering accutane. If you went private and your dr never asked if you had tried other medications and gave you accutane with no discussion of other options or what you had tried before, then you might have a case? Maybe?

In any case, you should obviously consult a lawyer or legal service like citizens advice if you want to pursue it. I'm sure you could find a free or low cost initial consultation type service in your area.

(I'm not a medical or legal professional, I've just done some reading on the subject)

I wish you speedy recovery :)

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5 hours ago, vanessaxdd said:

What about a red faced pull of cysts that bleed and hurt your face, ruin your self esteem, never going out the house?. Life sucks either way, not everyone gets those side effects. life is going to pass you by if you decide to stay inside all day because of your acne. You are only young once. 
35 minutes ago, JPOP said:

Thanks for your input. No need for the aggressive tone. My aim here is not to discourage or prevent people who want to take this drug. I'm interested in the liability nexus based on a misprescription. 

5 hours ago, vanessaxdd said:

What about a red faced pull of cysts that bleed and hurt your face, ruin your self esteem, never going out the house?. Life sucks either way, not everyone gets those side effects. life is going to pass you by if you decide to stay inside all day because of your acne. You are only young once. 

 

4 hours ago, Strongbodyforgoodskin said:
People like you are a problem, 

" b) in hindsight my skin, quite frankly, did not warrant this medication and certainly for not as long as the treatment period. I had mild facial acne and moderate back acne. Can I pursue the Dermatoligist for clinical negligence? I'm uk based."

Bullshit, you had a personal choice, nobody forced you to take isotretinoin and also your doctor certainly gave you a phamplet with all the possible side effects. Now what is most disturbing is you saying your acne didnt warrant the medication.... by making these stupid half-assed claims you are making it harder for everybody else to go on isotretinoin for their Acne that is more moderate/mild. I believe all acne warrants isotretinoin if you make the personal decision to take it, if you had mild acne you should have taken a lower dose but honestly cumalitive dose of 9000 is not really that high for your weight. This medication yes is toxic and causes damage but at the end of the day you had a personal choice, its like taking suicide but then saying my life did not warrant suicide.... makes no sense! For all those with persistent Acne wheter its mild or severe, isotretinoin as of right now is the most effective treatment and the side effects imo are always overhyped. 

 

4 hours ago, Strongbodyforgoodskin said:
People like you are a problem, 

" b) in hindsight my skin, quite frankly, did not warrant this medication and certainly for not as long as the treatment period. I had mild facial acne and moderate back acne. Can I pursue the Dermatoligist for clinical negligence? I'm uk based."

Bullshit, you had a personal choice, nobody forced you to take isotretinoin and also your doctor certainly gave you a phamplet with all the possible side effects. Now what is most disturbing is you saying your acne didnt warrant the medication.... by making these stupid half-assed claims you are making it harder for everybody else to go on isotretinoin for their Acne that is more moderate/mild. I believe all acne warrants isotretinoin if you make the personal decision to take it, if you had mild acne you should have taken a lower dose but honestly cumalitive dose of 9000 is not really that high for your weight. This medication yes is toxic and causes damage but at the end of the day you had a personal choice, its like taking suicide but then saying my life did not warrant suicide.... makes no sense! For all those with persistent Acne wheter its mild or severe, isotretinoin as of right now is the most effective treatment and the side effects imo are always overhyped. 

 Actually not all the side effects are listed on the pamphlet! Nor does it say that the sides can be permanent, long term and degenerative. No kid under 18 should be allowed on this drug. better still 21. After that - if you are fully informed of every single side effect  and the fact that the sides are NOT RARE then maybe adults should be allowed to make the informed decision to take this hell of a drug!
 

5 hours ago, vanessaxdd said:

What about a red faced pull of cysts that bleed and hurt your face, ruin your self esteem, never going out the house?. Life sucks either way, not everyone gets those side effects. life is going to pass you by if you decide to stay inside all day because of your acne. You are only young once. 

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Whatever you decide to do, make sure you do it sooner than later. There are usually stipulations based on time when you can pursue legal action. I have a similar case like yours. I had mild acne myself and the dermatologist solicited it to me during a mole removal procedure. He had a pretty young nurse my age explain the possible side effects to me (dry lips, lower back pain) She told me she had taken it herself, used aquaphor, etc. etc. I signed the waivers and was given pamphlets, but at 20 years of age, who really reads them and thinks they will develop them? Especially being part of an all state highschool team and in the top 98% health percentile my entire life. Verbally I was told different from what was on paper.

My treatment went fine, no side effects other than lower back pain and dry lips. It wasn't until 3 months after my last pill did my system begin to "crash" and develop a plethora of side effects including vision issues, systemic joint and tendon inflammation, slight intracranial pressure with tinnitus and more. I could go on for hours. I'd say I've had about 60% of the pamphlets listed side effects from one time or another to currently.
 

7 hours ago, Strongbodyforgoodskin said:
People like you are a problem, 

by making these stupid half-assed claims

 the side effects imo are always overhyped. 


People like us are a problem?

I think parents reading this would disagree with that. No one is discouraging users to take precious Accutane, however it is paramount that they realize they are walking into a casino, and have nary a say whether or not they are genetically susceptible to the medication. 

I have been researching this drug for years and the mechanisms of action are hard to pinpoint. I find your previous posts laughable as you are explaining to other people how it works with such confidence.

If you want to call bullshit on ppl's experience because it goes against yours, and are that confident, then by all means recommend it to family and friends. Heck, with your genetics, if and when you have kids, they will more than likely have acne, so give it to them too. I don't care either way. Edited by macleod

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10 hours ago, macleod said:

Whatever you decide to do, make sure you do it sooner than later. There are usually stipulations based on time when you can pursue legal action. I have a similar case like yours. I had mild acne myself and the dermatologist solicited it to me during a mole removal procedure. He had a pretty young nurse my age explain the possible side effects to me (dry lips, lower back pain) She told me she had taken it herself, used aquaphor, etc. etc. I signed the waivers and was given pamphlets, but at 20 years of age, who really reads them and thinks they will develop them? Especially being part of an all state highschool team and in the top 98% health percentile my entire life. Verbally I was told different from what was on paper.

My treatment went fine, no side effects other than lower back pain and dry lips. It wasn't until 3 months after my last pill did my system begin to "crash" and develop a plethora of side effects including vision issues, systemic joint and tendon inflammation, slight intracranial pressure with tinnitus and more. I could go on for hours. I'd say I've had about 60% of the pamphlets listed side effects from one time or another to currently.
 



People like us are a problem?

I think parents reading this would disagree with that. No one is discouraging users to take precious Accutane, however it is paramount that they realize they are walking into a casino, and have nary a say whether or not they are genetically susceptible to the medication. 

I have been researching this drug for years and the mechanisms of action are hard to pinpoint. I find your previous posts laughable as you are explaining to other people how it works with such confidence.

If you want to call bullshit on ppl's experience because it goes against yours, and are that confident, then by all means recommend it to family and friends. Heck, with your genetics, if and when you have kids, they will more than likely have acne, so give it to them too. I don't care either way.
Yes people who quote without context are a big problem, stop spreading falsehood. I stated that Accutane is a personal choice and everybody deserves to take it if they want knowing very well of the side effects. The phamplet clearly states the side effects including the severe ones and it says it could be long-term and lastly you have shown your true face quoting without context just proof that you want to decieve people. Tell me whats wrong with my opinion that nobody in this world should suffer from Acne? wheter its mild or severe, anybody who MAKES THE PERSONAL CHOICE should be allowed isotretinoin by a physician with blood tests for a affordable price!!! that is my opinion, nobody deserves to suffer from Acne!!!!!!!! 

Ok, I just want to point out, I have been very emotional here and YES isotretinoin is toxic.... and it can without doubt cause damage to the body. This Im not against.... people have actually DIED from it literally actually died. I retract my statement that it should be given to mild acne, I myself suffer from its side effects and its not fun but cmon severe Acne literally can destroy someones life especially if you are really shy.

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Hmm, yea, I don't think it quite works like that. I don't have to quote you at all...or I could quote every one of your sentences and address them individually. You could even do the same to me. Your words are your words. And adults should be able to discern that. I was just pointing out which ones set your tone, which the OP (original poster) read as aggressive also. Someone could start a thread right now saying Accutane was the best thing to happen to them...you'd rarely see someone like me, who has been here long enough, engage them in a debate, stating my opinion, and posting links to medical journals as a reference. Just senseless and not a fair dialogue..

Nevertheless, with respect to the OP who wanted to avoid a debate, I don't care to get into one either. If it's any consolation, after the 6 years on this forum, there have many of you's and many of me's. Time changes, but the people and percentages, they remain the same.

You're right, lot's of things in life are available to the public that may or may not harm them in the short or long term, most things in life are technically one's "personal choice", but that doesn't mean that we as fellow humans don't have the responsibility to analyze and regulate the things that are seemingly doing more harm than good. 

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On ‎3‎/‎14‎/‎2016 at 4:37 PM, macleod said:

Whatever you decide to do, make sure you do it sooner than later. There are usually stipulations based on time when you can pursue legal action. I have a similar case like yours. I had mild acne myself and the dermatologist solicited it to me during a mole removal procedure. He had a pretty young nurse my age explain the possible side effects to me (dry lips, lower back pain) She told me she had taken it herself, used aquaphor, etc. etc. I signed the waivers and was given pamphlets, but at 20 years of age, who really reads them and thinks they will develop them? Especially being part of an all state highschool team and in the top 98% health percentile my entire life. Verbally I was told different from what was on paper.

My treatment went fine, no side effects other than lower back pain and dry lips. It wasn't until 3 months after my last pill did my system begin to "crash" and develop a plethora of side effects including vision issues, systemic joint and tendon inflammation, slight intracranial pressure with tinnitus and more. I could go on for hours. I'd say I've had about 60% of the pamphlets listed side effects from one time or another to currently.
 



People like us are a problem?

I think parents reading this would disagree with that. No one is discouraging users to take precious Accutane, however it is paramount that they realize they are walking into a casino, and have nary a say whether or not they are genetically susceptible to the medication. 

I have been researching this drug for years and the mechanisms of action are hard to pinpoint. I find your previous posts laughable as you are explaining to other people how it works with such confidence.

If you want to call bullshit on ppl's experience because it goes against yours, and are that confident, then by all means recommend it to family and friends. Heck, with your genetics, if and when you have kids, they will more than likely have acne, so give it to them too. I don't care either way.
I find it so interesting when I see the same story over and over again. Same thing happened to me 3 months after Accutane everything went to hell! I would say most if not all of us have our symptoms and problems wax and wane. The come and go and then there's those that don't go away :( 

Jpop- Are you from the U.S. and if not what country are you from. Also, have you seen a specialist, had any testing, taking any supplements?

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On 18 March 2016 at 2:18 AM, oli girl said:
I find it so interesting when I see the same story over and over again. Same thing happened to me 3 months after Accutane everything went to hell! I would say most if not all of us have our symptoms and problems wax and wane. The come and go and then there's those that don't go away :( 

Jpop- Are you from the U.S. and if not what country are you from. Also, have you seen a specialist, had any testing, taking any supplements?


Thanks. I agree about the "system crashing" analysis. All these symptoms became very pronounced last month. But had probably slowly been building up without me knowing. Iam from the UK. 

I take flaxseed oil. That's it. Stiff neck has now developed. Creaky joints, constipation, fatigue and dry eyes still there. Real nightmare this drug. 

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Have you tried to get in to see Dr. Chu? Sheefa saw him and some other Accutane victims. He even spoke in the hearings against Accutane years ago. There is no magic cure, but he might be able to help! I will send you a pm in a couple days on some other things to try :)

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On 25 April 2016 at 1:30 AM, oli girl said:

Have you tried to get in to see Dr. Chu? Sheefa saw him and some other Accutane victims. He even spoke in the hearings against Accutane years ago. There is no magic cure, but he might be able to help! I will send you a pm in a couple days on some other things to try :)


Thanks very much- look forward to
the PM. 

Im not sure what good it would
be to see Dr Chu. Seems to be another dermatologist. 

I'm very disappointed  that this drug is prescribed for moderate acne (as was my case). It should have never been presented as a treatment option. 

Thanks for for all your help, I hope those who are suffering recover soon  

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I am returning back home from out of town this evening! Dr. Chu is a fern who spoke out against accutane in UK hearings and has helped some who have suffered from accutane! Sheefa and Lamarr1986 are just 2! 

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