Jump to content
Acne.org
Search In
Find results that contain...
Find results in...
Sheefa

Have a good read through this before starting/finishing Accutane please.

Recommended Posts

All,

Can you please take a look at this before starting or finishing your accutane course. My accutane experience was brilliant for the first 18months, then it came back to haunt me a year after finishing the course and I'm now in severe chronic joint pain. A word to the wise - really do have a look through this forum and see if it's worth it.

http://www.xsorbit1.com/users/davec//index.cgi?board=treatr

You need to all understand that the side effects DONT just happen while you're on the drug, they can easily kick in months/years down the line.

Thanks

Greg

Link to comment
Share on other sites

I'm glad other people, like yourself are here trying to warn others about this.

I have spoken to so many long term sufferes who all have typical accutane side effects. In 90% of the cases the sides begin to pop up in the months/years after accutane. They aren't the type of side effects you could put down to chance either.

RECOGNIZE THE TRUE RISKS ARE MUCH GREATER THAN YOU ARE LEAD TO BELIEVE.

Link to comment
Share on other sites

I swear people do nothing but put these thoughts into their head on their own. People are so paranoid, blaming everything they feel on Accutane. "Omg my head hurts today, should I stop taking Accutane?" "My left leg itches, I need to stop taking Accutane!!!"

I prefer not to think about the long term effects that people claim are due to Accutane.

Link to comment
Share on other sites

In a way I kind of agree with wantingskinfreedom. I'm not trying to be a jerk or insensitive or what have you because I don't doubt that accutane can have serious long term side effects. On the other hand, the people who do, unfortunately, experience long term side effects are quick to try and convince anyone and everyone that accutane is dangerous and should be pulled from the market. The fact of the matter is people who do experience long term effects are only a percentage of the total number of people have taken accutane. Is it a small percentage like derms will lead you to believe? I don't know. But I have read several studies following up with people who took accutane years earlier with no reported long term side effects.

Here is an example: http://www.drmirkin.com/morehealth/G200.htm

Like I said I'm not trying to be a jerk and I do really feel for the people who are experiencing problems down the road because hey there is a chance that that could be me as I am on accutane right now. But the choice was mine and I weighed the benefits against the risks. And for me, the chance of having clear skin-as well as stopping the physical pain caused by acne-was worth it. I've been dealing with this for years and during that time I wasn't really living, just surviving. You get one shot and I want to make it count.

Link to comment
Share on other sites

Guys, it's your decision.

You're right only a small proportion of people have side effects whilst on tane (I had hardly any!!) but there a lot of people who do have latent side effects that they never thought possible.

Take me. No diagnosis at all for the joint pain, and it is very severe, all bloodwork normal, all physical MRI scans normal, never had a problem until a year back and NEVER had any problems with my joints pre-tane. This was WITHOUT A DOUBT Accutane induced.

I'm sorry, I'm simply trying to say don't think the swings are happily going round when on Tane because after your course you can run into some massive problems. I agree things like depression, mental side effects etc are harder to contribute to tane, but my pain is very physical and without a doubt I'd prefer acne over this.

Greg

Link to comment
Share on other sites

Ok so you can live with acne your whole life and suffer the non stop emotional strain and insecurity or you can take a chance and end up acne free and without problems. One option has no chance of positive results (no accutane) and the other has a good chance of positive results. Of course if you have mild acne you shouldn't take accutane because no one cares about like 2 or 3 pimples on your face.

Link to comment
Share on other sites

Sheefa-I just read your other thread about how happy you were with your accutane results. Then you got into everything regarding the joint pain. I was just wondering how you were coming along with respect to a diagnosis or treatment for your problem. It seemed as though you were close-and you even mentioned it might not be tane related-so I was just curious. I actually felt a little better after reading it because you mentioend that your cartilage was fully healed. Now that I've noticed some of my joints have started cracking I've been really worried about any damage going on. I'll prob visit my derm this week to check with him.

All the best.

Link to comment
Share on other sites

I've had joint pain before the drug because I let myself get fat (lost the weight though - woohoo!). I've had periodic pain during the course. I'm sure I'll have pangs after the course. I did it to myself before I ever put the first pill in my mouth. However, I too am glad you're warning others. This is a serious medication and unless you're totally stupid, always research THOROUGHLY before putting something so potent into your body.

Link to comment
Share on other sites

Guest missyjean130

Sheefa: Were you psysically active while taking tane? If so, what activites were you doing? Also, Did you take anything during your course to help reduce inflamed/hurt joints?

This isn't a drug you should blow off as not a big deal. It is a huge deal, people Do need to take precautions! That doesn't mean you need to be scared off my all these horror stories people post on this site.

Also I agree with an above poster...People often blame accutane for everything that may not even be linked to taking accutane! The balding for instance..I've known plenty of men to go bald in ages between 20-30...and they never took tane.

Also If your putting a lot of stress on your joints WHILE on tane,don't you think that would be a serious contributing factor in chronic joint pain after tane?

Wear sunscreen, take things to help your joins (fish oil,glucosamine),drink water...etc etc...those are the things you need to do, because it is a serious drug. If your not willing to take these precautions, then you shouldn't take this medicine.

Oh, and don't get pregnant...you could end up with a cone head baby.

Link to comment
Share on other sites

Hi,

I hardly did any serious exercise when on Tane, only a bit of weight lifting to be honest. No running etc. I started football again in December 2006. The ortheopedic surgeon who performed the arthroscopy on my ankle said he was just shocked at the amount of 'extensive but superficial' cartilage damage from someone my age. It has fully healed but the persistant pain is still there as it is in all my other joints.

I know guys there are many causes of all sorts of things out there NOT related to Accutane, but trust me, this pain really is. I know it is. Never had any problems before and strangely one year after my course to the month this shows up. This is a COMMON story on most tane boards.

I took some glucosomine whilst on tane and did watch my diet, not enough mind. Now I am trying a Vit A free diet to see if that helps at all with the joint pain. My knee MRI scans have come back clear bar a small common problem, but it's only when yoy look inside the joint do you know the extent of the damage.

I would just HIGHLY recommend that if anyone is taking tane they take a decent hylauronic acid supplement, glucosomine, NO cod liver oil (contains vit a) and they go VERY easy with their joints.

Perhaps I caused this, perhaps it was God, perhaps it's a virus, perhaps it's just my body or perhaps it's Accutane. I can't answer this question, but as every other diagnosis and test is coming up blank for all the usual stuff - I'm going with the last culprit thank you.

Greg

Link to comment
Share on other sites

I swear people do nothing but put these thoughts into their head on their own. People are so paranoid, blaming everything they feel on Accutane. "Omg my head hurts today, should I stop taking Accutane?" "My left leg itches, I need to stop taking Accutane!!!"

I prefer not to think about the long term effects that people claim are due to Accutane.

THANK YOU! i realize that sometimes this drug really messes people up and its scary, but I'm pretty sure before going on accutane, most, if not just about everyone has talked with their family and friends about it. they've done the research. they know what could happen. if they're at all surprised at it and/or were too afraid to do it, they'd stop or never start. after reading posts about bad side effects, you make your own decisions. we all know the consequences. personally, the only side effects i've had so far are a bad headache, a minor one, and my lips being really dry. i havent been on it long enough to know i guess but i havent noticed anything different about myself at all. people's tolerances to the drug are so flippin different it's not always comparable.

i went to the doctor this morning and he saw that i was on accutane and just praised the heck out of it. it does have nasty side effects but he said that he'd consider it a miracle drug and thought i'd have phenomenal results. i realize that some people don't think doctors really understand patients while on this drug, but this is just what he told me. im trying to write this without offending anyone, sorry if i did.

Link to comment
Share on other sites

Never had any problems before and strangely one year after my course to the month this shows up. This is a COMMON story on most tane boards.

Greg, do you have any links for all these other "common" stories that other people have gone through? It'd be helpful to read other people's experiences.

And while its certainly possible that Accutane caused the joint pain that you are experiencing now, there's really know way that you can "know" absoulutely for sure. When I was 18, I suddenly started having sudden severe back pain--One minute I was find, the next minute I was screaming in pain, and my legs felt numb. It would come and go without warning, and sometimes I would fall while I was walking because of it. Guess what--I hadn't taken Accutane at that point, and I had absolutely no explanation for why it started. It continued sporadically for years, and usually isn't an issue anymore. There was another time that I went through some problems with the joints in my wrists--they would suddenly "lock up" so that I couldn't move my wrist at all. It almost felt like I'd broken them. Again, the doctors couldn't find a cause...and it eventually went away on its own. My own mother had severe rheumatoid arthritis (started in her early 20's), but it took many YEARS of constant pain for her to get an accurate diagnosis, and get on the proper meds. If you think doctors have some sort of crystal ball, you're wrong. It's all just an educated guess, and it can take a long time before they finally guess right. Just because they haven't found the cause/remedy yet for your pain doesn't automatically mean that it was Accutane. It's not like you can just go down a checklist, cross everything else off the list, and then assume it was Accutane by default. You just can't say, "I know absolutely, 100%, for SURE that Accutane caused all the problems I have now." Bad things happen to lots of people--Young people, healthy people, etc. who never took it. And sometimes there's just not an answer.

I'm incredibly sorry for the pain you are experiencing now, and especially for the lack of relief from the pain. No one should have to live that way. I think its good that you are here warning people to be careful--I think WAY too many people take this drug thinking its just a magic pill that will solve all their problems, when it really may create more. It's an incredibly dangerous drug, and could have negatively life-alterning effects, and the acne still may come back anyway. It's not something to take on a whim. I've refused to take this drug for almost 10 years because it terrified me when I read about all the possible effects--and I do think they are more common than people like to imagine. I personally got to the point of being willing to try it after having acne for 18 yrs--I like to imagine that maybe I could at least wear a short-sleeve shirt next summer (its a little unpleasant to be sitting here in pants and a long-sleeve shirt when its over 100 degrees outside--and 85 in the house...). So yes, keep warning people. Tell them that you strongly suspect Accutane as the cause, but try to keep your mind open to other causes too--and don't assume that everyone here is being careless with their health.

Link to comment
Share on other sites

Guest missyjean130

Sheefa, now the whole story comes out!

You did weight training while on tane.

And how long was it since tane that u started football again?

Yup, now stop posting your self caused horror story everywhere.

20 points for Melissa.W00t.

Link to comment
Share on other sites

I do plenty of exercise while Im on tane.. I thought it was a good idea.. Should I be stopping then? =p

Link to comment
Share on other sites

How old are you Missyjean, 14? You've been on Accutane a month right??

I had hardly any muscle/joint pain when on accutane and I did mild weight lifting to stay in shape, low weights and low reps. I went back to football about 4-5 months after my course and that was only 30 minutes 5-aside on a sunday.

You are so damn arrogant and ignorant. I would hate to wish this pain upon anyone, but if there's any justice you'll experience some of the more prominant side effects during your course, I just hope they go away unlike so many others who have been left in tatters.

Link to comment
Share on other sites

Now I think I know

What you tried to say to me

How you tried to set them free

They would not listen they're not listening still

Perhaps they never will

Vincent - Don Mclean

Link to comment
Share on other sites

Now I think I know

What you tried to say to me

How you tried to set them free

They would not listen they're not listening still

Perhaps they never will

Vincent - Don Mclean

Agreed Max.

Thank you. I can only try. I'm just saying I used to cry once a month or so as a grown man when my skin was bad. Now with the severe joint pain I'm practically crying everyday because I can barely move and do the things I did used to enjoy (clubbing, standing at concerts, football) acne or no acne.

If you HAVE to take accutane, please do take some decent supplements as I've mentioned in my other post.

Good luck

Link to comment
Share on other sites

Max/greg i have been trying to warn people here for a long time. They don't want to hear it, yet i still try.

People say "oh i know plenty of men who went bald between 20-30."

Who the hell doesn't? Accutane hairloss is different and if you get it you will know what i mean, hairloss across the entire scalp/body is not hormone related.

Same goes for all the nasty sides, you know if you had rosacea before you started and you know if it is in your family. It is common for someone to develop rosacea COINCIDENTLY while on accutane/just after they finish. That is highly unlikely, then take into account the number of people who have several side effects together, that all appeared just after finishing accutane. You will KNOW without a single DOUBT what caused these problems.

Unfortunately none of you will understand what im rabbiting on about until it happens to you. I have watched people go on accutane and begin complaining of certain problems (i try to warn them to stop or lower the dose), i can almost predict down to a tee what sides will pop up for them down the line.

Link to comment
Share on other sites

Indeed Lamar and you're a great bloke for doing so mate. As is Max.

I and everyone knows the long term risks are 'minimal' and they only happen to a small percentage of people, but christ do they hurt when they do happen POST-accutane. I know accutane caused my problems.

If you look at my thread back in Sept 2006 I was over the moon with the results and was loving life. I had hardly any side effects. THEY CAN HIT YOU LATER you just need to be warned. If you take precautions (the only safe one being not to take Accutane) whilst on your course then hopefully you will be one of the lucky ones.

How about this for a story.....

My mum went to Pilates, a Yoga type class the other day and mentioned to the instructor that I was looking to join too. The instructor asked why. My mum told her about all my joint pains and blood tests that came back negative, ankle operation, MRI scans you name it and she said she was confused but was certain Pilates would help. My mum then mentioned that I had taken a course of Accutane a year back and the Instructors face just DROPPED with shock. Her brother finished accutane just over 9 months ago and over the last 5 months has had sudden chronic back pain with no aggravating cause. Tests all negative, scans all come back just fine. No idea how it happened. Posture and ergonomics all perfect and he exercises frequently. Isn't that a little bizzarre how all the tests come back negative but we both start developing chronic joint pain and stiffness shortly after our courses of Accutane.

Step down the road at your own f**king peril. Ignorance is bliss for so many and I am fortunate to say I've learnt from my mistake.

Link to comment
Share on other sites

Sheefa I'm curious how long was your course, and at what dosage? How much do you weigh? And how many courses did you take?

Link to comment
Share on other sites

Guest missyjean130

I'm a bit immature at times, I'll give you that.

I don't think too highly of you though either.Give me proof it was the accutane that did this to you,give me a doctors word.Then I'll be more sympathetic.

Also what is the percentage of people left with chronic issues after tane? Give me a number.

I'm just getting really tired of people bitching about what tane has done to them,scaring people away from it...when those chronic issues will most likely never happen to them.

You knew the risks involved.We know the risks involved.

So nope, not going to feel sorry for you.

Link to comment
Share on other sites

Sheefa I'm curious how long was your course, and at what dosage? How much do you weigh? And how many courses did you take?

8 months, well it was supposed to be 6 months but I took 40mg per day for 4 months and 20mg per day for remaining 4 months as Derm said I could lower dose and stay on a little longer if I wanted to. I weighed 80kg so 12 1/2 stone. I also low dosed on 20mg for a period of 3 months in June 2007.

Overall I had a mild/typical course based on my weight and duration.

Link to comment
Share on other sites

Also I agree with an above poster...People often blame accutane for everything that may not even be linked to taking accutane! The balding for instance..I've known plenty of men to go bald in ages between 20-30...and they never took tane.

That's a fucking genius point, at least you aren't beating around the bush... So what you're really saying is...People are lying about accutane hair loss?

Link to comment
Share on other sites

Guest missyjean130
Also I agree with an above poster...People often blame accutane for everything that may not even be linked to taking accutane! The balding for instance..I've known plenty of men to go bald in ages between 20-30...and they never took tane.

That's a fucking genius point, at least you aren't beating around the bush... So what you're really saying is...People are lying about accutane hair loss?

Not lying...its just easy to blame accutane even when that may not be why their balding is occuring

Link to comment
Share on other sites

One weird thing I noticed while being on these boards for some time is that people who are badly affected by accutane seems to be mostly guys whether is it hair loss, joint pain or other serious side effects.

I was wondering whether accutane affects men more then women or is it something that guys do that females don't or the difference in built between genders and when it all adds up, something bad happens.

Something to ponder about. :think:

Link to comment
Share on other sites

Guest
This topic is now closed to further replies.


  • Personalized Advice Quiz - All of Acne.org in just a few minutes


×