3028 replies to this topic

[humanstate]

I didn't really care to read the last couple of pages but are you actually blaming Accutane for gum receding now? Also, trying to get Accutane banned is probably not the best action route. Good luck though buddy lol

I've determined this thread has turned into an all encompassing smorgasborg of hypochondriasis with accutane as the sole scapegoat for all of life's problems.

Normally, I wouldn't have a problem with people doing what they do, but when people start preaching how accutane is the devil and should be banned... Well I have a huge problem with that. After 9 years taking accutane, I can safely say that most of these "problems" are not in any way related to a drug they took for four months. These guys and gals should really seek some counseling. Breast lactations to treat post-accutane "problems"?!!? Come on now....

I completely agree. While I understand some have suffered real side effects due to the drug, we do experience the same over exaggerating people. Many who preach about how bad Accutane was, come back a year later and say they are completely fine. I took Accutane for at least 7 months (full dosage) and that was over a year ago. Accutane has helped me in many ways as well as others and therefore stating that Accutane should be banned is bogus. Some of you spend way to much on this website and google searching for a reason why everything is falling apart because of this drug.


Accutane was your choice.

Trust me kids if you were affected any of the same DIRECT effects of accutane you would have the same opinion.

Which you haven been.
You were one of the lucky ones.
But if a drug ruins a small amout of people's lives but makes more people feel good is it worth it?
It's worth it to you right? Cuz you took it and you're fine. You. YOU.

There are other people in the world.

People who are swayed, people who are guided, recommended and suggested.

People who dont know everything. People who are young and conditioned to believe what a doctor says.

So you should maybe stop being so self centered for a second and try and put yourself in someone elses shoes.

Edited by humanstate, 06 May 2012 - 04:06 PM.

[keiko1]

I don't feel we are being self centered. I mentioned that I feel for those that suffer the REAL side effects of Accutane, but I've never heard of gum receding or breast problems as a side effect for Accutane esp 7 years after the person took the drug..let's get real. Hairloss is scary, ibs can be life changing as well as chronic depression and joint problems can cause you to not do the things you love most but half the stuff that Accutane is being accused of in these types of threads can also be linked to natural aging. All I'm saying. If the derm didn't talk about the side effects to you, than I understand your frustration. However, when I take a different drug I always research the side effects and get to know the prescription I'm either putting on my face or in my body.

If a drug helps a majority of people and a small amount are affected, than yes it should still be on the shelves. Every drug has this risk.

Don't you feel your jinxing yourself by putting to much research into this?

Also, If you have receding gums, go to a dentist and get it figured out..I did a few years ago. Thumbs up for dental benefits.

Edited by keiko1, 06 May 2012 - 04:32 PM.

[tritonxiv]

So you should maybe stop being so self centered for a second and try and put yourself in someone elses shoes.

Then stop calling for accutane to be banned. The world dosen't revolve around you either. Remember that book you signed before you were allowed to take accutane? Yeah, maybe you should have taken it more seriously.

Edited by tritonxiv, 06 May 2012 - 04:32 PM.

[Believe]

The thing is that we are not talking about those simple side effects here, those side effects that go away after getting off the drug. We are talking about long term chronic side effects like IBS just to give a simple example. Drugs that induce severe life changing long term side effects should not be on the market it is as simple as that.

Take a look at a poll I started recently which does not paint such a rosy picture about the drug. Only one out of 15 people said that accutane had actually worked for them. For over 90 percent of the people the drug did not work!!

http://www.acne.org/...rt-in-the-poll/

I have yet to meet somebody in person who took the drug and does not regret taking it or who has not suffered severe side effects. An old friend of mine who was once a great talent in both soccer and tennis, somebody who excelled not only sports but also in school recently tried suicide and I know that if it had not been for the drug he would not be leading the life of a disabled person today...

I suggest that we ignore those folks who have not delved in depth into the topic of long term accutane side effects and who just disrupt the ongoing discussion here, as these people don't contribute in any way to the topic at hand.

Edited by Believe, 06 May 2012 - 05:40 PM.

[Dubya_B]

Eh, it's nearly the same old song and dance every time a pro-accutane poster decides to go through the effort of making us look like fools:

"Most people, including myself, don't get severe long term side effects during or after accutane treatment, so people who do develop such problems have no right to place blame on the drug"

Has anyone of you ever stopped to think that severe side effects of most drugs are rare. Otherwise they would be taken off of the market.

9 years without problems huh? Well, good for you. I was so lucky as to experience my libido drop to next to nothing, severe fatigue and depression set in, and muscle and joint pain begin during the exact same week that accutane's effects finally took hold and my acne cleared-up.

Still have the same problems 13 years later. ...and yes, all conventional medical explanations for my health problems have been ruled out, including psychological evaluations.

So where do you pro-accutane people propose I place the blame for all of my "Lifes Problems" if they all occured simultaneously with accutane's benefits?
Is anyone who experiences health problems that they suspect is caused by a drug, a hypochondriac by your definition if those same health problems are not listed on the drug label?

It's not like we have scientific evidence to back up our suspicions. ...Oh!, wait, we have plenty; and the FDA and medical community as a whole still seem reluctant to investigate any further, so we won't have solid answers explaining exactly how accutane caused our ills and you won't need to worry about accutane being banned anytime soon. You're just being paranoid

If you want answers as to why so many of us are undergoing strange medical treatments and coming up with odd theories, then see the above paragraph.
Basically, we are sick and desperate to feel better, but will likely get little help from conventional medicine until accutane's methods of action are elucidated.

Thanks for crapping on us when we're already down.

I suggest that we ignore those folks who have not delved in depth into the topic of long term accutane side effects and who just disrupt the ongoing discussion here, as these people don't contribute in any way to the topic at hand.

Agreed.

[Milano]

I took this drug for one week. 7 days.

Health problems before Accutane: Acne.

Health problems after one week of Accutane: Acne, Seborrhoeic Dermatitis, Follculitis, Rosacea/Facial Flushing, Hair Loss, Raynauds, IBS/Bloody Stools, Eye Floaters and Joint Pain.

These are not some vague symptoms that I'm trying to connect the dots to an event that happened years ago. This is a very distinct difference either side of a week of taking a drug. I had a SEVERE adverse reaction to this drug. This is probably extremely rare. But it happened and can happen to other people.

Some of these side effects have improved, some of maintained and some have progressed.


I suggest those of you who are lucky enough to have not been horribly affected by this drug go away and live in your comfortable world of ignorance and let us unfortunate ones discuss options to deal with these issues, even if they may be slightly quirky.

Personally, I might be a little selfish, but I really couldn't care about Accutane at the moment. I'd rather get my own shit together first. Sure I would like some concrete research done, but I think more progress will be made by groups like us trying different things and reporting back. First hand experience will always trump some 'theory' science done in a lab.

Oh, and saying 'Remember that book you signed before you were allowed to take accutane? Yeah, maybe you should have taken it more seriously' really dosent help anyone or even prove your point. It just makes you sound like a dick.

[tritonxiv]

Has anyone of you ever stopped to think that severe side effects of most drugs are rare. Otherwise they would be taken off of the market.

I suggest those of you who are lucky enough to have not been horribly affected by this drug go away and live in your comfortable world of ignorance and let us unfortunate ones discuss options to deal with these issues, even if they may be slightly quirky.

I suggest that we ignore those folks who have not delved in depth into the topic of long term accutane side effects and who just disrupt the ongoing discussion here, as these people don't contribute in any way to the topic at hand.

I have no problem with anyone discussing accutane and it's side effects. In fact, that is the original reason I came to this thread; with the hope to find some relevant information on any side effects I might contract in the future.

However Accutane should not be banned and I'm here to express that opinion. I and many others have had positive expiriences with the drug, as you can see in the accutane section of the forums.

It's preposterous to assume that because you had a reaction to the drug, any health problems you contract now and for the rest of your life must be blamed on accutane. You're free to believe what you wish, but Accutane is just a medicine with big risks and big rewards. So back down the accutane hate train and let people take responsibility for what they choose to put in their own bodies.

If there was an effective alternative to Accutane, I and many others would have jumped on it long ago. However for people with severe chronic acne, Accutane is their last hope for leading a normal life.

Edited by tritonxiv, 06 May 2012 - 08:16 PM.

[oli girl]

I still trying to figure out after all theese years why pro accutaners come on to a thread that is for thoose suffering from Accutane side effects. Though we are against Accutane, I don't see anywhere on your threads we come and tell you to stop taking accutane or bash you! Sorry, but all you do is clog up this thread with uncessary posts. Not trying to rude, just pointing it out.

If you have a side effect and need help Great! Otherwise please don't try and bash, argue etc....Besides we don't urge pro accutaners or people taking accutane to come to our thread! We have a right on this board just as you do. If you don't like our thread then don't read it.

still nobody here has answered my question regarding IgA, who else has low levels of IgA?

As the topic of colostrum has come up it makes sense to ask this question again, because a lack of IgA was one of the main reasons why I tried colostrum. IgA is one of the most essential substances to maintain the body's equilibrium and fight off invaders from the outside. Colostrum contains IgA as well as IgG, but do the research yourself...

If we were to find out that accutane causes long term IgA deficiencies it would be a major breakthrough, because it is linked to a lot of the symtoms we have like pink eye, IBS, leaky gut, blody nose/sinusitis... Actually once you have an IgA deficiency you pretty much suffer from an auto-immune disorder... A lot of people with gluten sensitivities have low levels of IgA as well.

Oh, I forgot to look at my old labs, I will do that tomorrow! I am sure mine are low considering I have 3 autoimmune conditions.

Edited by oli girl, 06 May 2012 - 08:38 PM.

[JosephBuchignani]

This is a thread for people trying to recover from having their lives ruined by Accutane. If that's not you, then... leave.

It's a bit like a male Scientologist showing up uninvited at a maternity ward to harangue the mothers on the myth of post-partum depression - the ultimate in bad taste.

Here's my suggestion to you guys. Start your own happy-party thread: "Enjoying the long-term benefits of Accutane". Talk endlessly about how spiritually fulfilling it is to have clear skin. We promise to stay out.

[IndigoRush]

Has anyone of you ever stopped to think that severe side effects of most drugs are rare. Otherwise they would be taken off of the market.

I suggest those of you who are lucky enough to have not been horribly affected by this drug go away and live in your comfortable world of ignorance and let us unfortunate ones discuss options to deal with these issues, even if they may be slightly quirky.

I suggest that we ignore those folks who have not delved in depth into the topic of long term accutane side effects and who just disrupt the ongoing discussion here, as these people don't contribute in any way to the topic at hand.

I have no problem with anyone discussing accutane and it's side effects. In fact, that is the original reason I came to this thread; with the hope to find some relevant information on any side effects I might contract in the future.

However Accutane should not be banned and I'm here to express that opinion. I and many others have had positive expiriences with the drug, as you can see in the accutane section of the forums.

It's preposterous to assume that because you had a reaction to the drug, any health problems you contract now and for the rest of your life must be blamed on accutane. You're free to believe what you wish, but Accutane is just a medicine with big risks and big rewards. So back down the accutane hate train and let people take responsibility for what they choose to put in their own bodies.

If there was an effective alternative to Accutane, I and many others would have jumped on it long ago. However for people with severe chronic acne, Accutane is their last hope for leading a normal life.

Right...

The thing about my gums receding.
It is happening.
I take better care of my teeth than the average schmuck.
I floss after meals, chew gum so food isn't sitting on my teeth and eat an overall healthy diet.
I also recently ditched flouride/glyrecin containing toothpaste because they are not good for you and don't have any benefits.
The only thing this can come down to, then, is dry mouth.
Accutane caused this and I've had it for the last six years.

I think you're an ass for coming on here and making out we're hypochondriac's.
Of course we're going to blame Accutane for our problems.
All/Most of us were in perfect health before touching the drug.

Chemotherapy can cause gum recession.

Basically, get the fuck out of here if you have nothing useful to say.
We don't want to hear it.
Go.

[JosephBuchignani]

*Moderator edit - Quoted post removed*

The thing about my gums receding.
It is happening.

Seth Roberts found that flax seed oil reverses gum damage.

[tritonxiv]

Right...

The thing about my gums receding.
It is happening.
Accutane caused this and I've had it for the last six years.

How do you know for sure that accutane caused this? Gum recession is genetic in 30% of the population.

I take better care of my teeth than the average schmuck.

Overbrushing can can gum recession as well.

Do you clench or grind your teeth in your sleep? Ask you dentist if he sees signs of it.

Buy a soft bristled brush or a sonicare electric brush and use a light circular pattern when going over the gums. Don't forget to brush your tongue.

Avoid biting into hard sugary fruits like apples and pears.

I floss after meals, chew gum so food isn't sitting on my teeth and eat an overall healthy diet.

Do your gums bleed or hurt after flossing? Try using a non-alcoholic antibacterial mouthwash before and after flossing to prevent further infection.

Do you use an alcoholic mouthwash? Alcohol can dry out the mouth.

Dry mouth at night? Buy an air humidifier for your room.

[Chico Esposito]

@tritonxiv - Who goes on a forum and mocks people with devastating long term side effects from a drug? maybe you should go on a falidimide forum and laugh at all the people that suffered birth defects because of that drug. Another poster hit the nail on the head, show me anyone on this thread that goes onto pro accutane threads and acts the same way as you do on here. You falsely mistaken if you think mild depression or gums receeding is the limit to posters problems . There are people on here with extremely severe side effects, things like ulcerative colitis or Crohns disease, i don't think a person killing themselves because of accutane is a mild side effect. Nor do i think the birth defects associated to drugs like accutane or soriatane should just be ignored. Have some respect for some of the posters on this thread and take your arrogence and condesending attitude elsewhere unless you have something positive or informative to say.

Edited by Chico Esposito, 07 May 2012 - 09:12 AM.

[AKL]

Alright people, enough with the bickering and the nonsense. Have a look at the topic title and stay on topic. If you have nothing to contribute, or if your only intention is to debate people who have suffered from Accutane's side effects, then stay out of this thread, or you will be given a nice, long break from this website. Thank you!

If from now on someone finds a post that doesn't comply with the above-mentioned, please report it or send me a message. Thanks!

[JosephBuchignani]

I want to post a correction. Colostrum is the mother's first milk, produced during late pregnancy and (presumably) immediately after birth.

Here is the Wikipedia link.

So my "drink human breast milk" theory may not work, or at least it is not precisely what I thought it was.

[swissclerk]

I am so glad I found this place. I've been suffering with side effects that never went away after I stopped Accutane. It's been over 8 years since I've been off the drug--and only 1 course of it.

My two problems: IBS with constipation and constant muscle and joint pain and stiffness. I've found a way to manage the former. I have found no solution for the latter. I've been to a rheumatologist and neurologist. I've had all sorts of blood tests and nobody could figure out how to help me. Heck, neither one of them even knew that accutane could cause muscle and joint problems.

So, where should I begin? How do I get rid of all this pain?

[Believe]

I want to post a correction. Colostrum is the mother's first milk, produced during late pregnancy and (presumably) immediately after birth.

Here is the Wikipedia link.

So my "drink human breast milk" theory may not work, or at least it is not precisely what I thought it was.

It seems like you did not read my earlier post in which I had already tried to make the point that milk is not colostrum. Many colostrum products, althoug labeled colostrum contain milk though. Why? Because milk is cheap and abundant, colostrum is not!!!

Often times people say this and that does not work and from my experience too many people don't study the things they try in enough depth to draw the relevant conclusions. If you just try the next best colostrum supplement at the recommended daily dose, the chances are that it will likely do next to nothing for you.

Edited by Believe, 08 May 2012 - 08:28 AM.

[JosephBuchignani]

That is precisely what Snow argues.

Yes, I read it, but I just assumed colostrum was a component of milk, not something different entirely.

[oli girl]

I am so glad I found this place. I've been suffering with side effects that never went away after I stopped Accutane. It's been over 8 years since I've been off the drug--and only 1 course of it.

My two problems: IBS with constipation and constant muscle and joint pain and stiffness. I've found a way to manage the former. I have found no solution for the latter. I've been to a rheumatologist and neurologist. I've had all sorts of blood tests and nobody could figure out how to help me. Heck, neither one of them even knew that accutane could cause muscle and joint problems.

So, where should I begin? How do I get rid of all this pain?

What have you tried for your muscle & joint pain? What test have doctors done? Where are you from U.S. or another country? Just curious as of your username?
Just to clarify you have the IBS & Constipation under control?

[swissclerk]

I am so glad I found this place. I've been suffering with side effects that never went away after I stopped Accutane. It's been over 8 years since I've been off the drug--and only 1 course of it.

My two problems: IBS with constipation and constant muscle and joint pain and stiffness. I've found a way to manage the former. I have found no solution for the latter. I've been to a rheumatologist and neurologist. I've had all sorts of blood tests and nobody could figure out how to help me. Heck, neither one of them even knew that accutane could cause muscle and joint problems.

So, where should I begin? How do I get rid of all this pain?

What have you tried for your muscle & joint pain? What test have doctors done? Where are you from U.S. or another country? Just curious as of your username?
Just to clarify you have the IBS & Constipation under control?

Thanks for the reply, I'll take your questions in order:
1. I have tried just about everything for the pain--supplements, OTC stuff, even took Vioxx for a short time with little relief. I have not, however, tried any kind of liver flushing, which I see to be a fairly popular remedy around here. Nor have I tried water fasting, which I've also heard people mention. I'm most curious to hear what others who have/have had this kind of joint and muscle pain did to get relief.

2. I don't know what blood tests the rheum. performed. He took 8 vials out of me and did eveyrthing imaginable, though I'm not sure if my thyroid was ever checked in that mix. He diagnosed me with some undifferentiated arthralgia. However, he had no knowledge of accutane. Hadn't even heard of the drug before. I was referred for an EEG and all that came out normal, so the neurologist was stumped too.

3. I'm in the US.

4. I would say that I have it under control. At least to the point where I'm off a prescribed laxative. I take a magnesium supplement that supplies with 100% of my daily magnesium and with a pretty careful diet, I'm managing those symptoms well.