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

Seens as you have an answer for everything, why don't you please explain to my why i and many others develope a large array of side effects (within several months/years of stopping) which are classically linked to accutane.

Here is my list and what many people get when they are hit hard by tane. Diffuse hairloss across the entire body, chronically dry eyes to the point of sleeping is less painfull than the grittyness and burning, rosacea/flushing, dryness across the entire body, joint pain, Secondary raynaud's disease.

Those are some of the classic ones people who have been hit hard by tane will develop in the first year ish post accutane, other ones such as psoriasis, RA, Ulcerative collitis etc can develope in the first two years post tane.

The way you can tell it is due to tane is if other strange side effects appear at the same time, i agree shit like RA can pop up in alot of people at any time. But when you have a whole host of classic tane sides popping up how the hell can you not blaim accutane? I really take offense when you say things like people are just looking for something to blaim their problems on.

I know the truth, if you have gone through something similar to me and have dove deep enough you know the truth.

My new derm is possibly the most respected and well known derm on the internet and he has broken it down to me,

"accutane can alter the body in an unlimited number of ways" and that is quoted directly from him.

"I have patients who have had things like chillitis persist for decades" is another.

Accutane clearly alters the body in the first place and if you think it is all in a positive way you are clearly very very NAIVE

My grandfather is a doctor of 50+ years and has been awarded an NBE by the queen i should of taken his word when he advise me not to take accutane. I was silly to take an anti cancer drug called Roaccutane, but i can accept this now.

Many of you have the chance not to take accutane and if you are reading this, i promise you it is NOT worth the risk, yes acne is bad, but i promise you what can and does often happen is far far worse. You can't even begin to imagine.

Summed it up perfectly. MANY MANY people develop symptoms associated with Accutane as stated in the pamphlet months/year after finishing the course. It is NO coincidence that these things happen, especially when all other diseases with similar symptoms have been ruled out.

I took Accutane and what a mistake. I'm in so much pain I truly don't feel I can cope with this. I can't run, I can't sleep, I can't do the job I was accepted and always wanted to do, I can't picture a good life at the moment. Oh, and my skin is gradually getting worse.

Long-terms side effects for short-term gain or possibly 'ever-lasting' clear skin? No thanks. Hopefully others will realise Accutane isn't the answer without going through what I and others have too.

Link to post
Share on other sites

Sheefa-I was just curious if you've tried a Hyafluronic Acid (HA) supplement yet. HA is made by the body and its a major component of joints, skin and eyes. With respect to joints specifically, its responsible for lubrication. As you might already know, accutane shuts down the bodies production of HA, which is why people commonly experience dry eyes and joint cracking/pain. If you haven't already tried it I suggest you give it a try. A lot of people have reported great improvements in joint pain-it might be worth it to give it a go.

Best Wishes Champ.

Link to post
Share on other sites
Sheefa-I was just curious if you've tried a Hyafluronic Acid (HA) supplement yet. HA is made by the body and its a major component of joints, skin and eyes. With respect to joints specifically, its responsible for lubrication. As you might already know, accutane shuts down the bodies production of HA, which is why people commonly experience dry eyes and joint cracking/pain. If you haven't already tried it I suggest you give it a try. A lot of people have reported great improvements in joint pain-it might be worth it to give it a go.

Best Wishes Champ.

Thank you mate. I have indeed been on HA supplements for 2 months now without noticeable effect. I am going to continue taking them to see if it helps things as it cannot do any harm. Appreciate the advice.

Guys - Can I just say I'm sorry. I don't mean to snap or be rude or hostile, but my state of mind right now is all over the place and I'm extremely scared of what I might do. I don't feel I can cope with this. I know there's the whole 'accutane did/didn't cause it' debate. Perhaps it didn't. But sadly because I took the drug 2 years ago there's no proven way of ruling it out.

Good luck to you all and please accept my apologies once again. I'm just very emotionally unstable and depressed right now.

Link to post
Share on other sites

Everyone that keeps shooting you down needs to think about what it would be like in your shoes. Im sure they'd also be on here warning people if that were the case. I Hope everything goes back to normal for you soon Sheefa. Goodluck.

Link to post
Share on other sites
Sheefa-I was just curious if you've tried a Hyafluronic Acid (HA) supplement yet. HA is made by the body and its a major component of joints, skin and eyes. With respect to joints specifically, its responsible for lubrication. As you might already know, accutane shuts down the bodies production of HA, which is why people commonly experience dry eyes and joint cracking/pain. If you haven't already tried it I suggest you give it a try. A lot of people have reported great improvements in joint pain-it might be worth it to give it a go.

Best Wishes Champ.

Thank you mate. I have indeed been on HA supplements for 2 months now without noticeable effect. I am going to continue taking them to see if it helps things as it cannot do any harm. Appreciate the advice.

Guys - Can I just say I'm sorry. I don't mean to snap or be rude or hostile, but my state of mind right now is all over the place and I'm extremely scared of what I might do. I don't feel I can cope with this. I know there's the whole 'accutane did/didn't cause it' debate. Perhaps it didn't. But sadly because I took the drug 2 years ago there's no proven way of ruling it out.

Good luck to you all and please accept my apologies once again. I'm just very emotionally unstable and depressed right now.

Are you still undergoing treatment by a doctor or still taking supplements to improve the condition? I'm not a person who know joints well but I do hope that you are seeing an orthopeadic or bone specialist because they will let you undergo more thorough tests to find out the problem.

I hope that you find a solution to your problem and good luck!

Link to post
Share on other sites
Hey, Greg. I'm so sorry you are experiencing so much pain. Rest assured, however, that its not in vain (rhyming not intended... although maybe I should considered a rapping career.) Everything you've shared here is going to affect people and cause them to proceed with caution. I understand hind sight is 20/20 (maybe 20/15?) and I truly appreciate everything you've shared. Rather than having to experience the negative side effects of tane myself, I can learn from yours and also share your story with others. Anyway, I'll keep you in my prayers. Continue to keep us posted (literally.)

Thank you.

I'm grateful for your kind words and hopefully mine will be one of the very few bad experiences on Accutane. I just wish it wasn't me.

Greg

Link to post
Share on other sites
Are you still undergoing treatment by a doctor or still taking supplements to improve the condition? I'm not a person who know joints well but I do hope that you are seeing an orthopeadic or bone specialist because they will let you undergo more thorough tests to find out the problem.

I hope that you find a solution to your problem and good luck!

Hi Maddy.

I'm under 3 specialists at the moment. My orthopeadic surgeon, a rhemeutologist and my local GP. I'm having a isotope bone scan on Monday, I want to demand another MRI on my right ankle to see if there have been any degenerative changes since the last scan in jan 2008 and I also want to undergo a joint fluid analysis.

I'm taking all the usual joint supllements. Glucosmine 1500mg per day, Chrondrotin & MSM, HA 500mg per day, Biocell 2 Olympian Tabs which consist of the above - 6 a day. I'm also trying to exercise but it's a struggle.

I probably look quite stocked and strong, but I'm not. I'm as weak as a new born goat right now.

Thanks again. I can honestly say if things don't improve in the next 4 months I will be at that end stage. I simply can't picture a life like this.

Greg

Everyone that keeps shooting you down needs to think about what it would be like in your shoes. Im sure they'd also be on here warning people if that were the case. I Hope everything goes back to normal for you soon Sheefa. Goodluck.

Thanks Micky.

I appreciate that. I'm simply one of the very unlucky few, but rest assured there will be more. This drug is brilliant for the people who have the right coping genetics. Unfortunately, there's no way of telling who has such a gift and those like me who simply can't tolerate the toxicity of the acne cure.

Link to post
Share on other sites
Guest missyjean130

You tell him to grow up for saying that...and then you call him a douchebag.

Ya lol.You fail.

Link to post
Share on other sites
It's not just being made fun of either, it psysically hurts to have acne.I can't sleep on the side of my face,I can't smile when there are clusters in my laugh lines,I have to be careful whilst yawning.

I had a lot more pain PRE-accutane than post. I couldn't wash my face or hair without pain. And the stomach problems I've had because of long term antibiotics have been kinda gross (although slowly healing). Cystic acne is painful, scarring, embarrassing and disfiguring. I am not sure why these guys want to scare people into staying acne ridden. Most of us understand the risks involved.

However, I do understand being in pain and wanting to know why and being very angry because no one can tell you what it is or how you got it (I have had neck pain since I was for 25 years). So I sort of understand what their motivation is. I just don't agree with trying to scare everyone else. I wish they would just say, "Hey, I think accutane injured me and if you want to know more, email me."

Link to post
Share on other sites
However, I do understand being in pain and wanting to know why and being very angry because no one can tell you what it is or how you got it (I have had neck pain since I was for 25 years). So I sort of understand what their motivation is.

Platinum007, I feel you need to go through what we're going through to understand our problems were due to accutane. Nobody were trying to scare people off accutane. Some of the guys here were just trying to warned others about the severe side effects (because they are suffering from long term side effects due to accutane. Me included). Fair enough, Cystic acne can be mentally tormenting as well and most likely only accutane can help clear cystic acne but what I want to warn people is, do consider low dose as higher dosage can cause severe side effects if you are one of the unlucky ones.

Link to post
Share on other sites
Guest missyjean130
However, I do understand being in pain and wanting to know why and being very angry because no one can tell you what it is or how you got it (I have had neck pain since I was for 25 years). So I sort of understand what their motivation is.

Platinum007, I feel you need to go through what we're going through to understand our problems were due to accutane. Nobody were trying to scare people off accutane. Some of the guys here were just trying to warned others about the severe side effects (because they are suffering from long term side effects due to accutane. Me included). Fair enough, Cystic acne can be mentally tormenting as well and most likely only accutane can help clear cystic acne but what I want to warn people is, do consider low dose as higher dosage can cause severe side effects if you are one of the unlucky ones.

Yes but if people are going to spent their money on tane,derm visits,and blood tests...theyre gunna want to get the dose that will actually get rid of their acne...

Your derm puts you on a dose thats right for your weight!

Link to post
Share on other sites
It's not just being made fun of either, it psysically hurts to have acne.I can't sleep on the side of my face,I can't smile when there are clusters in my laugh lines,I have to be careful whilst yawning.

I had a lot more pain PRE-accutane than post. I couldn't wash my face or hair without pain. And the stomach problems I've had because of long term antibiotics have been kinda gross (although slowly healing). Cystic acne is painful, scarring, embarrassing and disfiguring. I am not sure why these guys want to scare people into staying acne ridden. Most of us understand the risks involved.

However, I do understand being in pain and wanting to know why and being very angry because no one can tell you what it is or how you got it (I have had neck pain since I was for 25 years). So I sort of understand what their motivation is. I just don't agree with trying to scare everyone else. I wish they would just say, "Hey, I think accutane injured me and if you want to know more, email me."

We are allowed to express our bad experiences just as people are allowed to express their good. You don't see us telling you to get peopel to email you for your experience....

How are the dry eyes from accutane? i'm trying restasis myself due to severe ocular rosacea thanks to tane.

Link to post
Share on other sites
Guest missyjean130

But you're not helping by drowing everyone in negativity about the drug.It's nice to make people aware of the side effects...but Sheefa only posts about how accutane messed him up.How does that help anyone?

You do it too Lamarr! I see you in other threads doing what he's doing.

"he's post tane,his side effects should have went away by now"-some guy

"If only that were the case..."- Lamarr

Yeah his side effects might go away but then you have step him and use your little fear tactics causes worry where it may not be necessary.

You guys think I'm the bad one?Sheesh...I think not.

Link to post
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.

Well, what about the headaches I got that I had to stop taking accutane for. What about those same headaches that I continued to get for months after I stopped taking it?

Link to post
Share on other sites
But you're not helping by drowing everyone in negativity about the drug.It's nice to make people aware of the side effects...but Sheefa only posts about how accutane messed him up.How does that help anyone?

You do it too Lamarr! I see you in other threads doing what he's doing.

"he's post tane,his side effects should have went away by now"-some guy

"If only that were the case..."- Lamarr

Yeah his side effects might go away but then you have step him and use your little fear tactics causes worry where it may not be necessary.

You guys think I'm the bad one?Sheesh...I think not.

I'm not trying to scare anyone. Merely open their eyes to the truth. Side effects often don't appear until after you have stopped taking accutane, that is a fact that is recorded on many medical journal websites, most people aren't aware of this. So i am trying to change that (have been doing the same for over a year now and you won't stop me).

You are extremely young and nieve, i know we all think we know everything when we are teenagers, but we really don't. No i am not trying to claim i do either but i have learn't an awfull lot from my bad experiences with accutane.

Why else, other than to try and warn and help others in a similar situation to me, would i be here? I Don't exactly have much of an acne problem any more and the little acne i am left with seems highly trivial when compared to the problems left by tane.

Link to post
Share on other sites
Nobody were trying to scare people off accutane. Some of the guys here were just trying to warned others about the severe side effects (because they are suffering from long term side effects due to accutane. Me included). Fair enough, Cystic acne can be mentally tormenting as well and most likely only accutane can help clear cystic acne but what I want to warn people is, do consider low dose as higher dosage can cause severe side effects if you are one of the unlucky ones.

Yes, I believe they ARE trying to scare people off accutane. Why else would they keep on and keep on with the messages?

The guys here don't need to warn others about the sever side effect because the doctors already do that. Everyone knows there are a lot of risks involved in taking ANY drug.

A low dosage may not cure the cysts. If it doesn't cure it, then they need to go on a second course and that would be MORE and not LESS medicine in the body. I find that riskier than taking a standard, tried and true dosage that most doctors recommend.

...

Your derm puts you on a dose thats right for your weight!

And that dosage is the balance between side effects and a possible cure. More might put you in danger, less may not cure it.

Please, folks, listen to your doctors. They really do know accutane well. It's been around for a very long time and has cured many, many people of disfiguring, painful cystic acne.

Link to post
Share on other sites
It's not just being made fun of either, it psysically hurts to have acne.I can't sleep on the side of my face,I can't smile when there are clusters in my laugh lines,I have to be careful whilst yawning.

I had a lot more pain PRE-accutane than post. I couldn't wash my face or hair without pain. And the stomach problems I've had because of long term antibiotics have been kinda gross (although slowly healing). Cystic acne is painful, scarring, embarrassing and disfiguring. I am not sure why these guys want to scare people into staying acne ridden. Most of us understand the risks involved.

However, I do understand being in pain and wanting to know why and being very angry because no one can tell you what it is or how you got it (I have had neck pain since I was for 25 years). So I sort of understand what their motivation is. I just don't agree with trying to scare everyone else. I wish they would just say, "Hey, I think accutane injured me and if you want to know more, email me."

We are allowed to express our bad experiences just as people are allowed to express their good. You don't see us telling you to get peopel to email you for your experience....

How are the dry eyes from accutane? i'm trying restasis myself due to severe ocular rosacea thanks to tane.

But I'm not trying to scare anyone like you guys are. I am only supporting those who have one last chance to cure their acne. It's not an easy choice to go on accutane and I believe there is no good reason to scare people into ditching what might be the ONLY thing that cures them of painful, disfiguring, embarrassing and scarring cystic acne.

I am still not sure about the Restasis. Compliance is difficult as it needs to be used 2x a day EVERY day. And I am not entirely sure it's helping. However, since it takes months to start working, I don't want to quit for a year, try to remember how dry eyes WERE on Restasis, then start up again and wait 3-6 months for it yo start working again. Plus, I'm 42 and I'm likely to get worse ANYways and never really know if Restasis worked or not.

One thing, my severe dry eyes were the LAST side effect to mellow out. It took a while but I would have to read my log to remember. But the chronic conjunctivitis went away in a few weeks. That was by far the worst part of accutane for me.

Link to post
Share on other sites

Sheefa took a 145mg/kg course, that's a high dosage already, 120-150 is the normal range, my derm put me on a 125mg/kg course, I don't know if the extra amount of isotretinoin makes a difference.

But what I'm also curious about is the possibility that LONGER exposure (even at a lower dose) to isotretinoin can cause more/augmented contraindications.

Especially since Sheefa continued to low-dose (self-medicated?) after his already-high extended (8 month) "lifetime dose".

I'm not blaming you Sheefa, I'm interested what could have made Accutane such a nightmare for you.

Good luck.

Link to post
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.

Well, what about the headaches I got that I had to stop taking accutane for. What about those same headaches that I continued to get for months after I stopped taking it?

Have your headaches gone away?

I'm not trying to scare anyone. Merely open their eyes to the truth. Side effects often don't appear until after you have stopped taking accutane, that is a fact that is recorded on many medical journal websites, most people aren't aware of this. So i am trying to change that (have been doing the same for over a year now and you won't stop me).

Why else, other than to try and warn and help others in a similar situation to me, would i be here? I Don't exactly have much of an acne problem any more and the little acne i am left with seems highly trivial when compared to the problems left by tane.

Do you think you are helping people?

Link to post
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.

Well, what about the headaches I got that I had to stop taking accutane for. What about those same headaches that I continued to get for months after I stopped taking it?

Have your headaches gone away?

I'm not trying to scare anyone. Merely open their eyes to the truth. Side effects often don't appear until after you have stopped taking accutane, that is a fact that is recorded on many medical journal websites, most people aren't aware of this. So i am trying to change that (have been doing the same for over a year now and you won't stop me).

Why else, other than to try and warn and help others in a similar situation to me, would i be here? I Don't exactly have much of an acne problem any more and the little acne i am left with seems highly trivial when compared to the problems left by tane.

Do you think you are helping people?

Honestly i do, even if you aren't seeing all of what i do. I get dozens of messages about hairloss treatment, post accutane flushing etc etc and i always help them.

You need to of seen both sides of the coin and i believe people who suffer from long term sides have. I saw accutane as the last hope to cure me, but at the same time i am suffering greatly due to it. You only see the good because of what it did for you.

You can say listen to your doc, but trust me many derms haven't a clue about these long term sides, i had to visit so many derms before i found anyone who could help.

Low dose is far better, even if you need a second round longer duration of exposure is far better than acute high dosing.

Link to post
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


×