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Sheefa

I can only keep trying to help guys

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All,

I know many users will browse this forum and others before starting their accutane course and will no doubt be extremely excited about the success stories, and let's be honest there are so many and I was certainly one of them a couple of years ago.

I know what it's like to have acne, hell of course I do, and I know how your world literally seems isolated and crippled because of it. It is such a horrible disease and nobody should have to suffer from it at all - there's simply not enough medical research being done to help everyone out with new safer treatments.

Accutane was my last resort, even though the Regimen had started to work slowly. I always ask myself do I regret it as I sit here with clear skin (the odd pimple here and there) but in a lot of pain. For ME, it wasn't. For many others it WAS. and for many others it WASN'T.

I never dreamed of ended up in the shape I am. Jesus, I'm a 25 year old male who just got acceped back in June 2007 into one of the toughest most physically demanding careers today, the Royal Air Force Regiment. I'm not blowing my trumpet, but I wasn't just fit, I was super-fit. I was a good 12.10 stone and the majority was muscle. I was playing sport and working out pretty much 5-6 times a week and loving it. This was a year since I finished my accutane course.

I've lost 10pounds in the last 4 months. I now have incredible and I really mean incredible chronic severe joint pain that nobody seems to be able to help me with. I literally feel crippled and I've cried more times in the last 2 months than I ever did in 6-7 years of having acne. People will say well 'how can you link that to accutane' - but it was.

Here's the key example. I had taken a couple of smaller maintanence courses of 20mg per day for about 3 months back in November and May. It was the occassional pill more than anything.

Back in late May 2008 I had a couple of spots appear and I still had a few 20mg capsules left so I took them. Hell I didn't know accutane was causing my chronic ankle pain. Within 15 days of taking about 6 capsules I woke up in widespread joint pain which I am still in to this day. That's no coincidence. Stupid of me I know, but just think about what's happening if you have that second course of tane or a longer one.

I'm not trying to preach, I'm just begging you to consider all other treatment options. I read somewhere that in 85% of cases acne can be cleared up through other treatments other than accutane. So, that's hope right? Seriously, I can barely hold down my job anymore, I'm trying but the pain floods my mind. My girlfriend and I recently split up after 3 years (funny we got together when I started Tane when I was so happy) and my mates and family haven't a clue what to do.

In summary: was I suicidal about my acne - yes at times but I know I would of never done anything that drastic as there were treatment options and I could still live my life fairly well.

Am I suicidal now? Every single day. Every minute I think about ending my life. I've seen a counseller but they don't understand the frustration of being in constant pain, nobody can fully appreciate it just like acne. People have ranted and slated me about posting this negative story, but honestly I'm just trying to help. I would hate people, anyone, even my worst enemy, to end up like this.

This isn't a life, it's a shell. I genuinely do not see any happy future ahead right now.

Greg

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Dear Greg (Sheefa),

I can tell from what you write that you are suffering and you do not have to suffer. Suicidal thoughts are caused by chemical depression (chemicals in the brain -- usually not enough seratonin) and the chemical imbalance can make your body ache and make you prone to colds, stomach aches etc. Depression is a medical condition like diabetes. Without medicine, no amount of positive thinking will get rid of it. There are many, many medicines available that will correct the chemicals responsible for depression. Also, there are some good therapiest/counselors and some bad ones. If you did not feel the first one understood you, keep trying a different one until you find one that understands and can help.

If you find the right anti-depressant (Lexapro really helped a loved one of mine), I would be willing to bet your body aches will improve after 30 days. Sometimes you have to try a couple of different anti-depressants to find the right one or ones for you. Try it. Life is worth living. This too shall pass and you will be healthy again.

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I'm so sorry you're going through this, Greg, but thank you for posting a warning. I think a lot of people have trouble heeding both the positive and negative effects of this drug.

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Hey man, Im sorry that happened..... but trust me, its NOT the end of the world because you have severe ankle pain.... some people don't have legs and they're still having a good life! Be strong buddy

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I am so sorry about your pain. I hope it goes away soon. It does scare me a bit because my 14 year old started accutane eight months ago. He just turned 15 this month and is on his 8th and final month. His biggest complaint has been joint pain in his ankles. He was not able to do cross country. It's not severe and he takes a tylenol every now and then. I pray it doesnt turn severe. I am pretty sure he will need a second course but am re-thinking it. He has some persistent cysts but hopefully they wont come back.

Thank You.

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Sorry to hear about your plight bro. This is ultimately why they post all those warning labels on the packaging. Its tough to go through Im sure. Im on my second week right now and my lips are just starting to chap up. I still work out 4 days a week but, NO IMPACT MOTIONS. This is key. No running, punching or high impact anything. I repeat, this is key. Also, I take suppliments to counter any posssible reactions my body might have with this drug. Tri-Boron Plus is great for bones. Here's a link,

http://www.vitacost.com/Twinlab-Tri-Boron-...in-D-Co-Factors

Also for the spike in cholesterol related to Accutane, there is a product called Kyolic formula 104 with Lecithin. Here is the link for that,

http://www.kyolic.com/html/products/kyolic/kyolic104.htm

Inflamation in the body is one of the main reasons everything in our bodies goes wrong. That and high acidic levels in the body. Make sure to take plenty of Salmon Oil twice a day as well. Pump plenty of Vitamin C as well. Keep that immune system strong at all times. I know most people don't believe in supplementation, however this info is for those that choose to benefit from it while taking this very powerfull and unpredictable drug.

Regards

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Damn thats crazy,...

Its crazzy how docs. can never find out on some people why after tane, even years after it they can have bad pains everyday. Which is kind of ironic because thay alll say Tane can make your joints weaker and or dry or what ever, but they cant think of anything to do...

But man i hope docs can get you some pills to take for the pain ...no pun intended on the pills part. Or something...Stupid question have you tried icy-hot for it?

Good luck

-Joe

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would doing weights 4 or 5 times a week affect my joints, when on accutane??

i'm guessing weights is more stress on muscle rather than the actual bones and joints themselves. and so far i havent experienced any joint pain at all...ive been going for about 8 weeks on 40 mg/day.

i put on some nice muscle bulk before starting accutane and i really dont want to lose that by not going to the gym anymore.

i also dont do any high-impact activity that may put stress on my joints (e.g. running, punching) but i do cycle to keep fit and keep the cholesterol levels down.

wat do u think greg??

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guys it really just depends on yourself. bar extreme dosages, which I personally believe greg took, you cant judge very accurately how you will respond to a treatment compared to others. just like how some people take one treatment and are done for life and others have done many and still suffer.

if you feel nervous about the risks talk to your dermatologists, they know best, they know you personally, your records, and also are the most educated on the subject. im sure they can tell you if you are at high risk for problems and if you are they probably wouldnt have even prescribed it to you. it seems like greg looked fine going in but just had prolong and elevated dosages as well as a bit of "bad luck"

nothing against greg of course, i feel for him, but if you are so worried about taking this drug you probably should check out some alternatives.

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Hi Greg, I understand what you are going through regarding thinking of suicide every single day even though we are suffering from different side effects, but give yourself more time and see if the pain will go away eventually.

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I really wasn't on that much of a high dosage guys.

Think about it, over a 2 year period I had effectively a 9 month course of 40mg per day. Many people only find relief for a year or so and therefore go on a course the following year, my case is pretty similar. My cumulative dose over 2 years was 140mg per kg which isn't that much.

Thanks for all the kind words of hope and well wishes. It's hard when all conventional meds don't do a single thing to numb the pain and I'm facing more exploratory surgery.

I never really did any high impact activity. I played the occassional game of football for 20 minutes once a week but that was about it really. Weight lifting too.

If you're clear, I would suggest lowering the dose, but of course this will go against the 'rules' of cumulative dose. Your choice - I made a bad one don't follow my example please.

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ÃŽ wonder if the cumulative dose actually has something to do with anything. 40 mg a day got me clear and now I lowered to 25 and will lower at 20 sept 17.

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I'm sure cumulative dose does have somethingto do with it. All I can say is if you're clear guys by using another Regimen or another topical, then stay that way and don't take Accutane. If you've cleared up on Accutane too and you're only about 1-2 months in, perhaps you could switch to a topical then and maaintain your clear pores instead of ingesting further Tane.

My cumulative dose really wasn't more than the norm for my bodyweight of 80kg. In fact it was 1mg. I would of loved to have gone back and tried a lower dose, but then again when I think about it the first course of 6 months at 40mg probably didn't screw me up, it was likely the other 2 short course of 3 months at 20mg in October 2006 and June 2007 that did the damage.

Apparently there is a scientific study proving that a longer low dose course has the same skeletal effects, if not worse, than a high dose short treatment.

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Anyways my derm doesnt allow anyone to stay on tane more than 6 months ( whatever the dosage ) and does not accept to do second courses.

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Anyways my derm doesnt allow anyone to stay on tane more than 6 months ( whatever the dosage ) and does not accept to do second courses.

Good for your derm.

I was actually on a 6 month course of 40mg per day started back in December 2005 but thought I would reduce my final 2 months to only 20mg per day so I could stay on it for longer as I was clear. Hence I did 4 months at 40mg per day and the other 4 at 20mg.

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Anyways my derm doesnt allow anyone to stay on tane more than 6 months ( whatever the dosage ) and does not accept to do second courses.

Do you believe that significantly reduces the chances of long term side effects? Because i can tell you now it doesn't.

Go on the accutane action forum. Plenty of people only went on accutane once for as short as 4 months.

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Anyways my derm doesnt allow anyone to stay on tane more than 6 months ( whatever the dosage ) and does not accept to do second courses.

Do you believe that significantly reduces the chances of long term side effects? Because i can tell you now it doesn't.

Go on the accutane action forum. Plenty of people only went on accutane once for as short as 4 months.

One guy took Acuutane for a month I think and has ended up with permanant sexual dysfunction. Very true.

I think for me the side effects kicked in now because of my dosage perhaps, where as others they will kick in later down the line.

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Mine kicked in right after i finished, within months i started getting strange sides. i was on a pretty high dose but i wasn't on the drug for very long at all and my cumulative dose was around 105 mg per kg.

I am starting to worry recently as my left elbow and right knee are starting to really hurt and are swollen.

gaaaah ive had just about every side effect there is.

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Anyways my derm doesnt allow anyone to stay on tane more than 6 months ( whatever the dosage ) and does not accept to do second courses.

Good for your derm.

I was actually on a 6 month course of 40mg per day started back in December 2005 but thought I would reduce my final 2 months to only 20mg per day so I could stay on it for longer as I was clear. Hence I did 4 months at 40mg per day and the other 4 at 20mg.

9 month course is too much, it doesn't matter you took lower or higher dosage..!

How come your derm let you take it?!!!!!

I am thinking that your derm didn't have any experiences with Accutane...!

I am sorry to hear about your story...I hope you will get better... :pray:

My derm has a lot of experiences with Accutane patients, and all his patients have/had great results. He is like 70 years old man!!! I don't know his real age, because I don't ask him, but he is a so sweet old doctor like my grandfather!

I am having great improvement overall. Also it might sounds funny to others...but Accutane is helping my depression. I am no longer an unhappy person. I am a very social and happy person since I started taking Accutane. My family and bf are so happy! My bf used to disagree with me on Accutane, but now he is very supportive about it. I also think that having a great support from your love and family will make you stronger, and it helps reducing your depression level.

My derm told me that my course will be 6 months. I have two more months to go.

I hope everything will be fine with me! Today I am going to my derm at 2:30!

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I dont care wheter it is possible for me to get long term effects if things continue the way they are im just gonna suicide

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When is this going to end?

Sheefa, with every medicine there are people who get extremely rare side effects....that goes for every single medicine. The things you are describing occurs probably one in every couple thousand (at least). Yes, there is a chance, but every medicine you take can have serious side effects. Sorry that you're joints are messed up, but I think its unfair for you to come on here and scare people away that probably wont experience any severe side effects (and probably benefit greatly from the medicine).

Especially with accutane, people know the pro's and con's, and what could possibly happen to them if they take the medicine.

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When is this going to end?

Sheefa, with every medicine there are people who get extremely rare side effects....that goes for every single medicine. The things you are describing occurs probably one in every couple thousand (at least). Yes, there is a chance, but every medicine you take can have serious side effects. Sorry that you're joints are messed up, but I think its unfair for you to come on here and scare people away that probably wont experience any severe side effects (and probably benefit greatly from the medicine).

Especially with accutane, people know the pro's and con's, and what could possibly happen to them if they take the medicine.

It's my right as a human being for christs sake to warn them. Yes, I was unlucky but there's no telling who else might suffer the same fate. You just dont know. Would you really take something you know very little about? Roche aren't even sure as to the exact mechanism of accutane yet. Symptoms can creep up years down the line - fact. I'm not saying everyone will have my experience, but there is a CHANCE that they will and by god trust me it's by far, far, far more unpleasant than spotty skin.

It's not unfair on me at all. If I've prevented once person from going on the drug and turning to an alternative treatment that works, then for me that's a success. I will keep posting here like it or not as I feel I need to make others aware, more aware and aware again. This isn't just any 'prescription drug' that does the rounds month in and out. It's a deadly chemotherapy drug FFS.

Greg

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I totally agree with skmrprsn!!!

What you have is very rare side effect, and not everyone experience it. Can you provide us the scientifically proven statistics /results about the long term side effect??

You are trying to make other feel negative about Accutane results without any scientifically legitimate proof. There is NO scientific report about the Accutane long term side effect.

I am so sorry to hear about your experience, BUT it is not fair to scare people like that..

I believe people should take Accutane with their derm, and not illegally(such as buy online). It is very important to check blood every months to avoid any health issue.

Everyone reacts differently with the drug, like any other drugs. But I am sure that many people are very happy with their Accutane results.

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I will keep posting here like it or not as I feel I need to make others aware, more aware and aware again. This isn't just any 'prescription drug' that does the rounds month in and out. It's a deadly chemotherapy drug FFS.

Greg

Amen.

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