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ThumperLove

Accutane RUINED my life!!!

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Just a warning I wanted to post! I wish I could:

I took 2 cycles of Accutane back in 1996-1997 for moderate to severe acne that wasn't responding to other treatments. It did clear up my acne for about 5 years afterwards but the acne DID come back a few years ago.

My experience:

About a few weeks into treatment I started developing some side effects, mild wheezing/Asthma, joint pain, frequent urination......and of course the usual suspects, dry skin etc. My doctor kept assuring me that these side effects couldn't possibly be from the Accutane and I had probably developed allergies (environmental). WELL, a few months later I started realizing that the wheezing and shortness of breath happened after I ate certain foods.......so during Accutane treatment I developed FOOD allergies, which I have to this day! And many chemical skin sensitivities, shampoos, soaps, lotions etc.

Now lets go back to the frequent urination.........Accutane successfully destroyed the lining of my bladder and left me with a disease called "Interstitial cystitis"/"Painful Bladder syndrome", which is a very PAINFUL disease, basically.......when certain foods or liquids hit your bladder, the lining is destroyed and it feels like BATTERY ACID is being poured on an open sore! AND I have to go to the bathroom 25-40 times a day! During accutane treatment, the increase wasn't as significant....I had doubled my bathroom trips, but the disease isn't cureable and has progressed to this level over the last several years. When I quit the accutane, these symptoms didn't go away! The joint/muscle pain continued and even WORSENED and I was diagnosed with Fibromyalgia, Myofascial Pain Syndrome and Interstitial Cystitis!

Joy oh JOY! Thanks to Accutane, I am now a Chronic Pain Patient with uncurable, not well understood by the medical community DISEASES!

I have since met others that developed SERIOUS bladder problems WHILE taking Accutane. One friend of mine started bleeding from her bladder 2 weeks into treatment and is NOW currently applying for disability because the pain is so intense she can no longer work.

I've also met people who developed serious food allergies while on Accutane.

I wasn't aware of the risks of IC, Bladder cancer, Fibromyalgia, Myofascial Pain Syndrome when I began Accutane treatment........if I had a crystal ball, I never would've taken the stuff. It is TOXIC and I can't believe all the horror stories I've run into from people that have taken it over the last few months.

I've filed a complaint with the FDA and am currently in contact with 18 other people that now have serious irreversible bladder diseases, so if anyone here starts experiencing frequent urination/nighttime urination, or bladder pain..........please call your doctor and be aware that Accutane can destroy your bladder! AND cause Fibromyalgia!

Best of luck to all!

Thumper

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how come you didn't stop your course after your 1 month check-up? you'd think the doctors would have been able to see that your body wasn't responding well to accutane, and therefore should have taken you off the drug.

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Oh wow. I'm so sorry to hear that.

But couldn't they tell you to stop? I mean, were you being monitored with blood work and all that stuff?

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Another one-post wonder. Hm, well, I'm sorry it didn't work out for you, and I also wonder why you didn't just get off of it after a month if it was causing such pain and misery.

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Another one-post wonder. Hm, well, I'm sorry it didn't work out for you, and I also wonder why you didn't just get off of it after a month if it was causing such pain and misery.

At the time, I didn't realize the frequent urination was caused by the accutane.......nor the wheezing!! My derm kept telling me that I was probably allergic to "pollen", and as for the increased urinary symptoms, bladder pain.......they were somewhat mild for the first few months. MY derm referred me to my GP, and they started running tests on my for diabetes.......which came back negative. I also kept getting checked for UTI's/Bladder infections and those were coming back negative as well.

I basically BELIEVED the doctor. ALSO, nothing on the internet or Accutane information does it mention anything about this being a side effect.

It took me several months to realize that my asthma/wheezing was directly related to certain foods. Especially foods high in Vitamin A. My body started recognizing this as "the enemy" because I had basically overdosed on it with the Accutane.

The bladder disorder I have is fairly rare........so most physicians aren't familiar with it enough to diagnose it. What I've learned through my accutane experience is to REALLY be your own advocate and just because a doctor says "no way this is a side effect of this med", you have to be proactive and do your own research! But you have to remember, I was 26 years old at the time and DESPERATE to get rid of my acne that made me extremely self conscious! I was EAGER to believe that it was coincidental and nothing to worry about, because I really wanted accutane to be "the wonder drug" and rid me of acne forever.

I started popping in on some support groups over the last few years for Fibromyalgia and Interstitial Cystitis and accutane came up in conversation.....well I am AMAZED at how many of us with these auto-immune like diseases had all taken accutane at one point or another. Its creepy.

I'm not trying to scare anyone away from it, I know some people take it with no problems and have great results. However, when I hear stories about joint pain, frequent urination........I just wanted to make you all aware that although these symptoms start off MILD, like mine did........it progressed over the last 10 years to the point where I now go to a Pain Clinic just to stand up straight!

There will be a few of us, that do react badly to Accutane, as with any prescription med. But this particular side effect isn't listed......and it should be.

Of course, the pharmaceutical industry is a big GIANT and all about making money, so many of these small problems tend to get swept underneath the rug. Capitalism in America and all that jazz.

I wish you all better success and no permanent damage from Accutane! Unfortunately, I"m not one of the lucky ones :(

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Risks of bladder cancer? Care to explain to me how a drug which is sometimes used as a chemotherapy agent due to it's slowing of rapid cell division could possibly cause cancer?

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Risks of bladder cancer? Care to explain to me how a drug which is sometimes used as a chemotherapy agent due to it's slowing of rapid cell division could possibly cause cancer?

I was on the typical Accutane diet, no alcohol, limited intake of certain foods, etc. Basically, what the doc told me to do.

I'm unlcear on the exact scientific method of how how Accutane does something to destroy the "mast cells" in the bladder. I'm not a scientist, I'm an economist.......but basically the theory of what happened is controversial in the medical community:

Epithelial Permeability-Leaks

C. Lowell Parsons (42-43), of the University of California, San Diego, is at the forefront for research of the GAG layer and epithelial permeability. He hypothesized that IC patients may have a defect in the epithelial permeability barrier of the bladder surface GAG layer, leading to irritative components of urine penetrating into the more sensitive layers of the bladder wall

3) Mast Cells

There is evidence that mast cells are involved in IC, although it may be in a secondary role rather than as a direct cause of IC. Mast cells release histamine in a process called degranulation, which can cause localized pain and irritation in tissues where the mast cells are present. Bentzen et al. (44) discovered that patients with a higher level of mast cells in their bladder tissues experienced more bleeding and a reduced bladder capacity. Johannson and Fall's (45) research demonstrated that mild IC patients did not have elevated mast cell counts and that they appear to be increased only in patients with classic IC. Using an electron microscope, Theoharides & Sant (46-47) confirmed that the mast cells in IC patients are more likely to be degranulated or activated than in other conditions, clearly demonstrating local irritation of bladder tissues. Elbadawi (48) believes that mast cells play an important role in his own proposed neuroinflammatory reactions in IC. Research continues to evaluate the role of the mast cell in IC.

Other Causes

Urine abnormalities, perhaps the presence of an irritant in the urine, offer yet another possible explanation of IC. Keay et al. (49) assessed various urine growth factors and discovered that IC patients had unusual variations in contrast to the normal population. In another study, Keay et al. (50) may have identified a protein found in IC patients that may inhibit growth of the bladder epithelium. Both cases, as well as additional studies, apparently add credibility and interest to this line of research.

Neurogenic inflammation appears to be gaining respect among a subgroup of IC researchers. Neurogenic inflammation implies that nerves themselves can generate some degree of inflammation. As mentioned above, Elbadawi believes that the mast cells may actually be triggered by some type of nerve dysfunction (48). Autoimmunity and the consideration of IC as an autoimmune disorder continue to be controversial and too complex to discuss in this workbook. For additional information, we suggest that you refer to Hanno (3).

Now.......HOW exactly accutane altered the mass cells and GAG layer of my bladder......I'm not sure. I will have my friend from my IC support group pop in here and tell you all what happened to her. Her bladder started bleeding severly within a few weeks of Accutane. I'm not the only one here.

It just upset me to read these posts about "joint pain", etc......because I HONESTLY believed that these problems would resolve themselves once I was finished with the accutane treatment, but they didn't.

As far as the studies on accutane and cancer:

Mortality was 24.2% for the isotretinoin group and 23.4% for controls.

When stratified by tumor stage, histology, and smoking status, current smokers given isotretinoin had a higher mortality rate then the smokers in the placebo group and a non-significantly increased rate of recurrence.

As with many scientific theories......there are quite a few contradictions in studies. And naturally, the drug companies will market the studies that line their pockets the most.

Look at the great lengths the tobacco companies went to in years past to HIDE the fact that they KNEW tobacco caused increased risk of cancer and heart attacks. Do you think any multi-billion dollar industry would be any different? Of course not.

You have to understand, these diseases such as Fibromyalgia and IC were virtually unheard of 10-20 years ago........but the numbers are growing and growing. I suppose when enough of us are afflicted by it, it will be addressed in the manner that cancer and heart disease are.

Regards,

TL

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Mortality was 24.2% for the isotretinoin group and 23.4% for controls.

That doesn't even seem like a statistically significant deviation. Not to mention that the cancer causing agent in this case is much more likely to be smoking rather isotretinoin which is used as an anti-cancer agent.

And for the vast majority of patients, side effects like joint pain do resolve after medication cessation.

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ALSO, nothing on the internet or Accutane information does it mention anything about this being a side effect.

...

I'm not trying to scare anyone away from it, I know some people take it with no problems and have great results. However, when I hear stories about joint pain, frequent urination........I just wanted to make you all aware that although these symptoms start off MILD, like mine did........it progressed over the last 10 years to the point where I now go to a Pain Clinic just to stand up straight!

There will be a few of us, that do react badly to Accutane, as with any prescription med. But this particular side effect isn't listed......and it should be.

They list depression as a side-effect of Accutane without any substancial proof; you'd think they'd list ever possible side-effect. No? Probably because your condition has no relation to your Accutane course.

Progressed over 10 years eh? So then how can you concretely blame Accutane? You cannot. If this disease is so rare it is just as likely you would have developed it regardless of whether you had taken Accutane.

You say this side-effect should be listed on Accutane. Ok, if it had been listed, would you still have taken Accutane? Yes, I suspect. If you are not prepared for the possible consequences do not take any drug. We all know how terrible Accutane can be. It is posted everywhere, from the drug packaging to the internet. Don't scare people heedlessly. Since you cannot tell us with definite proof that Accutane ruined your life, go to some other forum where they'll believe you - cause we don't.

Accutane can have severe side-effects. Accutane may have ruined this persons life. If you're taking Accutane you should be aware, it could seriously harm you. Don't bitch about the injury after it happens, you knew it could have.

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ALSO, nothing on the internet or Accutane information does it mention anything about this being a side effect.

...

I'm not trying to scare anyone away from it, I know some people take it with no problems and have great results. However, when I hear stories about joint pain, frequent urination........I just wanted to make you all aware that although these symptoms start off MILD, like mine did........it progressed over the last 10 years to the point where I now go to a Pain Clinic just to stand up straight!

There will be a few of us, that do react badly to Accutane, as with any prescription med. But this particular side effect isn't listed......and it should be.

They list depression as a side-effect of Accutane without any substancial proof; you'd think they'd list ever possible side-effect. No? Probably because your condition has no relation to your Accutane course.

Progressed over 10 years eh? So then how can you concretely blame Accutane? You cannot. If this disease is so rare it is just as likely you would have developed it regardless of whether you had taken Accutane.

You say this side-effect should be listed on Accutane. Ok, if it had been listed, would you still have taken Accutane? Yes, I suspect. If you are not prepared for the possible consequences do not take any drug. We all know how terrible Accutane can be. It is posted everywhere, from the drug packaging to the internet. Don't scare people heedlessly. Since you cannot tell us with definite proof that Accutane ruined your life, go to some other forum where they'll believe you - cause we don't.

Accutane can have severe side-effects. Accutane may have ruined this persons life. If you're taking Accutane you should be aware, it could seriously harm you. Don't bitch about the injury after it happens, you knew it could have.

Spezza,

If you don't believe me, that is your perogative. I DO know the onset of these symptoms occured during accutane treatment. I have my medical records that clearly indicate that my physician was clearly *baffled* by what was happening and put me through a series of tests to rule out diabetes, MS, bladder infections, etc.

I was TOLD that the joint pain, muscle pain would stop once I finished my accutane treatment. It didn't. I can clearly see that I am not the only person on here that has persistant joint problems. Those that do, I encourage you to see a rheumatologist. Mine was familiar with post-accutane Fibromyalgia. Links have been published in the world of Rheumatology.

Interestingly, IC takes can take up to 10 years to properly diagnose.

FIGURE 1. Findings of the First U.S. Epidemiological Study About Interstitial Cystitis

--------------------------------------------------------------------------------

It takes an average of 4.5 years and five physicians to arrive at the correct

diagnosis.

For every patient diagnosed with interstitial cystitis, there are five symptomatic patients who have not been diagnosed.

The median age of onset of symptoms is 40; 25% of patients are under 30

years of age.

50% of patients with interstitial cystitis cannot maintain full-time employment because of disease-related disability.

Here's a small sample of some dialogue I've had regarding accutane:

Have any of you been on Accutane?

By ****

________________________________________

This is an acne medication for cystic acne. I've been wondering for a very long time if there is any connection between vulvadynia and accutane.

By:******

I've been wondering for a very long time if there is any connection with Accutane and any of the stuff that ailes me, namely fibromyalgia and IC and recurrent dry eyes/mouth. When I was taking it (oh, gosh, its been about 11 years ago) is when I first started feeling tired on humid days and some of my fibro symptoms started.

By:*****

I think Accutane caused my food allergies and IC.........even though I took it several years ago, my health started tanking shortly thereafter and has just gotten WORSE. I have noticed many of us have taken it, IC should be added to the LONG lists of warnings for accutane.

Re: Accutane and IC

________________________________________

Hey ****...well I have IC. I thought I did and I actually have PNE. If you look on the handbook page of this site theres an article about PNE. PNE often gets misdiagnosed as IC or urethral syndrome. The main symptom of PNE is basicallly burning in the urethral area/clit area but only when sitting down...it gets releived when standing. It is a nerve entrapment in the back. But anyway to answer your accutane question..my frequent urination first started a few months after taking Accutane. But at the time I didn't think anything of it. Actually so many symptoms started after accutane. I started feeling stiff in my joints and my back would ache sometimes. I needed glasses shortly after taking it too. At the time I didn't think it was a big deal..I thought the side effects were temporary but looking back I think it really did some perminant damage to my body. My body felt 100% healthy all my life until that drug. Sinse then its been slowly down hill...weird random symptoms here and there that all started after taking that drug. With it causing aches in my back and joints who knows if it is to blame for the PNE..or atleast partially to blame. Cause it can affect our bones (in teens it can affect the growth of bones). I was 19 when I took it. But I feel like it is too hard to prove Accutane causing all my ailments.

I think it should be taken off the market.

Hi **** - I was suffering from vuvular folliculitis (kinda like having severe acne down "south") three years ago and they tried so many things to resolve my problem - antibiotics, creams, cortizone injections. Finally my dermo prescribed Accutane. I was so afraid to take it, because I had heard it was so toxic, that I sat on the prescription for four months. After a particularly bad case of folliculitis, I bit the bullet. I sure wish I had listened to my inner voice. After TWO days on the med, I started to significantly bleed from my bladder. My PCP and dermo were out, so I went to the ER and the doc there said he'd never heard of that, why didn't I take it again to see if I couldn't replicate the bleeding...??? What matchbook cover did HE get his license from? Sheesh! Unfortunately, that is the start of my IC saga.

My PCP and dermo had never heard of this happening before...neither had my uro. If it's toxic enough that they make you sign your life away to take two forms of birth control -- it's saying something about the med. What slays me is they give this med to KIDS!! The part that drives me nuts is that after I had the reaction, my dermo prescribed some milder med that took care of the problem. Why didn't she do that in the first place instead of going with the most toxic med on the face of the earth?

It's interesting that you mention allergies. I have a friend, who has a friend who took Accutane, and apparently that person developed SEVERE food allergies that she suffers from even to this day.

My Intention here is not to scare anyone, but just to make people aware that there are side effects that are NOT listed.

I am aware of a law firm right now that is putting together a mass tort law suit for bladder injury from accutane.

I realize that MANY people have been helped tremendously by this drug and that is GREAT! I'm truly happy for them. But there is a minority of people that will not only end up depressed......they will end up in chronic pain.

It is imperative that we be our own advocates and my hope that is, if someone reads this and is going through a SLEW of tests to rule out diabetes and UTI's.........they can have a cysto and diagnose IC sooner and begin proper treatment and/or pain management.

Hmm......would I have taken accutane had I known it could trash my bladder and give me Fibromyalgia?

HECK NO.

I used to be very active and athletic.

I would've exhausted less toxic treatments, because accutane only put my acne in remission for a few years, and at what cost?

I now have to see a urologist, rheumatologist, and pain clinic monthly. Oh vey!

I stumbled upon this website today......in search of yet another topical solution to help with the acne. Again.

ugh. I just was disheartened to read about people that are told that many of these side effects go away.

for the majority, maybe.......

That is the beauty of a public forum. Some of us have great results, others don't. I would think that MOST people would want to know all possiblities in order to make the most educated decision on the gamble of accutane treatment.

Again.....my apologies if I "scared" anyone! If one person experiences bladder pain while taking accutane and stops it SOON enough, they may spare themselves a chronic illness. Then, my post would've helped ONE person.....and that to me, is worth it.

Regards and best of luck to all.

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Thumper- hey, sorry to hear you are going through a rough time with your health. I am not saying anything about it being related to Accutane or not.. I dont think you should necessarily blame Accutane, but perhaps your derm who neglected to be more aware of your complaints during treatment.

I am supposed to start accutane soon, and I am scared beyond words. I am really scared. But ya know what? I can also say that I am scared of what kind of life I will lead with this acne plaguing me forever. I understand that health is more important than acne.. If I had a crystal ball, too- and could see my future.. I'm sure I wouldn't do alot of things, and maybe the Accutane will help me forever and itll be the best decision I ever made.. Or maybe it'll be the worst. You siad you wuoldnt have taken it had you known it would mess up your bladder and give you fibromyalga (Sp?)- But, you can't possibly know that before taking anything. A friend of mine has fibromyalga and severe acne, and never took Accutane. She's a dancer and mother and deals with it every day. Where'd she get it from? She never took any acne medications except topical products. Where'd you get it from? You can't say, because you don't know if you would have gotten it anyway. I am not dismissing the fact that Accutane can cause serious health problems. But at the same time I think people like to blame it for everything that ails them. It has gotten a bad rep, and it's kind of a shame because SO MANY people have been saved by this drug. It's unfortunate that some others have had bad experiences. And you are right, you should get out the bad stories as well as the good... But, part of the problem is tht people blame SO MUCH on accutane and it gets really old, I guess. That's why people react so badly to the negetive stories. And maybe the fact that you wrote ACCUTANE RUINED MY LIFE as your title didn't help.

Ive seen stories on this board since I joined and some are so wildly imaginative. One guy said Accutane made him fat and get cellulite. I explained why that was impossible. I wouldn't be surprised if someone says Accutane made them a transexual. "I felt like a man before taking Accutane. Now I like women's clothing. It has to be the Accutane's fault." lol... Oh well, Feel better, ok?

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Thumper- hey, sorry to hear you are going through a rough time with your health. I am not saying anything about it being related to Accutane or not.. I dont think you should necessarily blame Accutane, but perhaps your derm who neglected to be more aware of your complaints during treatment.

I am supposed to start accutane soon, and I am scared beyond words. I am really scared. But ya know what? I can also say that I am scared of what kind of life I will lead with this acne plaguing me forever. I understand that health is more important than acne.. If I had a crystal ball, too- and could see my future.. I'm sure I wouldn't do alot of things, and maybe the Accutane will help me forever and itll be the best decision I ever made.. Or maybe it'll be the worst. You siad you wuoldnt have taken it had you known it would mess up your bladder and give you fibromyalga (Sp?)- But, you can't possibly know that before taking anything. A friend of mine has fibromyalga and severe acne, and never took Accutane. She's a dancer and mother and deals with it every day. Where'd she get it from? She never took any acne medications except topical products. Where'd you get it from? You can't say, because you don't know if you would have gotten it anyway. I am not dismissing the fact that Accutane can cause serious health problems. But at the same time I think people like to blame it for everything that ails them. It has gotten a bad rep, and it's kind of a shame because SO MANY people have been saved by this drug. It's unfortunate that some others have had bad experiences. And you are right, you should get out the bad stories as well as the good... But, part of the problem is tht people blame SO MUCH on accutane and it gets really old, I guess. That's why people react so badly to the negetive stories. And maybe the fact that you wrote ACCUTANE RUINED MY LIFE as your title didn't help.

Ive seen stories on this board since I joined and some are so wildly imaginative. One guy said Accutane made him fat and get cellulite. I explained why that was impossible. I wouldn't be surprised if someone says Accutane made them a transexual. "I felt like a man before taking Accutane. Now I like women's clothing. It has to be the Accutane's fault." lol... Oh well, Feel better, ok?

LOL, thanks Frankie! :)

I'm surprised really that I have upset some people :( It truly wasn't my intention. Honestly, I didn't start puttting together the accutane w/ the auto-immune disorders until I started meeting several people that had the same stories as me.

I guess it is the same as saying, would one take Vioxx if they knew they had a slight risk of stroke? Some would, some wouldn't.

I relate with you more than you realize. I was suffering from very low self esteem because of the acne. Would I have taken this gamble? I don't know. Maybe. Maybe not. Everything is so different in hindsight.

I suppose I would've felt better about my decision if the accutane would've put me in permanent remission! Atleast I could be acne free at my doctor appointments! LOL Sorry to hear about your friend w/ fibro. I do think some people are more susceptible to adverse effects than others. I have a friend that took accutane and is 100% fine and healed......so there could have been something that pre-disposed me to it, and accutane possibly triggered it?

I know somebody that is a medical research scientist that is considering doing a lab rat study on accutane and fibro and IC. Maybe that will shed some light? The timing for me is just too coincidental, ya know?

LMAO @ the transexual comment! Thanks for the laugh!!!

My heart really goes out to everyone that has to deal with chronic acne! :( I wish you great success with accutane and stay FAR away from those side effects, will ya?

hugs,

TL

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Thumper,

I really appreciate your post and I believe people should be properly warned about the dangers of this drug. I think that many poeple on this forum believe that these awful side effects will not happen to them. I do not blame them because most of them are pretty young and acne is causing them severe distress at 'this' moment. However, wait until they see the effects of this drug down the road.

Thus, I wanted to reiterate a bit of my story. I was prescribed Accutane (40 mg a day X 5 months) for mild acne. At this point, I was one of the top five highest paid male models in the world and traveling extensively. I would always have one or two pimples on my face, which really bothered me. My derm 'told' me that Accutane was the cure all for acne and that with my very mild acne I would have a 99% chance of having the perfect skin I had always wanted. It sounded too good to be true and now I know it was.

During my treatment my skin cleared beautifully within the first month. I was told to remain on the drug for the next four months to 'ensure' that the acne would not ever come back. Thus, I followed my dermatologists orders believing he knew best. What I was not told was that the mild side effects I was experiencing during my course could persist after the course or even get worse, which is exactly what happened.

About a month after my five month course the side effects that I considered 'worth it' while on the Accutane started to get even worse. I had the awful side effects of severe lower back pain, dry lips, dry eyes, fatigue and extremely dry skin. My skin is now covered daily with eczema, which I never had before Accutane. I cannot even put my face in the water during a shower because it is so sensitive and fragile. I continue to have a 'red' face and now have welts and cracked skin due to the dryness. Thus, it sucked all of the 'good' oil right out of my skin. On top of this, my skin has remained itchy to the point where it is difficult to even sleep at night. This has been 24/7 for the last two years since Accutane.

Some of you might say that I did this to myself, but I too trusted my dermatologists when he said that these side effects would disappear once I was off Accutane. It is now two years post my Accutane treatment. I have seen numerous doctors, dermatologists, homeopathic specialists, etc. and no one can help me. Need less to say, but this ended up killing my career in modeling. My agency said that the clients I had contracts with feel sorry for me, but nevertheless the business has to roll on.

Lastly, before Accutane I had 'zero' medical problems 'ever'. I may be one of the unfortunate 1% that Accutane harms, but what if it's you next. Of course I never thought this could happen to me. How could someone be on top of the world, making tons of money, have a wonderful job traveling the globe, have great friends and family and have something as devastating as this happen to them?

Please know that this happens much more often then people on this particular site would like to admit. I encourage everyone to yahoo or google Accutane Action Group Forum and spend a couple of hours reading thousands of other stories like mine. I wish everyone the best. I did not post this to scare people, but rather to let it be known that this poison can destroy lives. I am 29 years old now and leading a completely different and painful life.

God bless!!!

JB

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Thumper- Aww Im glad you got a laugh out of my post! I hope to do that for some people, who get my humor. LOL I know it's surprising that a post could upset so many people.. but it's just the fact that people don't want to hear things like that.. Even if it is 100% true, ya know? It puts ideas in their heads, and makes the drug that much more scary... I mean, it is impounded in your head before taking the drug that you are basically poisoning yourself.. and I think most people feel like they wish to God they didn't have to resort to poison to fix a "superficial" problem.. Because that's what non-acne sufferers tend to say about acne. They don't realize it is absolutely far from superficial. It affects everything from your self esteem, self image, respect, the path you might take in life, etc. I know for me I had to hault my college education because of this.. I could never concentrate on learning when I'm concentrating solely on my skin and how it might look in the light im in, and how many bumps are showing now that my oily skin has dripped my makeup all off and that hour I spent getting ready was all in vain. Ya know? It's highly frusterating. I see alot of people post about how they skipped class because of an especially bad skin day.

As far as the auto-immune disorders.. I do believe there could be a connection there, but don't discount the many groups of auto-immune disorder patients with different "blames" for their disease. There are many groups that are stemmed from Breast Implants.. So, did the breast implant cause an auto-immune disorder, or did the person have it previously with no symptoms? I mean..you can't possibly know this information. And don't forget all the people who never took any medications, don't have breast implants, etc.. and yet still exist with an auto-immune disorder.

(And as for JefferyB saying he has chronic eczema now.. It probably was the accutane... but my sister has psoriasis and never took any medications. Go figure!)

If I was you, I would keep tabs on your friends research study. That's pretty interesting and it directly pertains to you. Let me know what the findings are!

Anyway, darling- Don't worry about upsetting people. Like you said, if your post helps one person it is worth the upset. I hope that you feel better and you don't have to be at so many doctor appointments. Lord knows no one likes Doctors. And as far as your acne coming back.. Dagnabit- I hope it goes away!!!!! Did you take antibiotics previously to Accutane? This might be a bigger culprit to your fibro, if you took them that is. (Long term antibiotic use has been proven to be more damaging than one course of Accutane.) And did you say you were on Accutane twice? That could possibly have added to the symptoms.

Alright- I hope you feel better! And don't go turning transsexual on me.. I don't want to be proven right LOL JK, And thank you for wishing me well. I appreciate that whole-heartedly because I am intensely scared. I will just pray that I'll be okay!

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I'm sorry to hear that your health got so screwed up because of accutane :( . I took accutane back in 1995 and then in 1997 and i can say that it helped me get rid of cystic acne and did not destroyed my health. I was able to finished school, had children, get a good job, things that i hadn't accomplished with my disfigured face. But everybody is different. I suggest to everybody to listen to their bodies while on any medication, any changes in behavior, just quick cold turkey. I hope you find a solution to your health problems. :pray:

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this thread is depressing, but think about it (original poster). Im assuming you have no more acne or at least when u didnt have anymore for those 5 years after accutane, didnt u have a much better social life and a lot more confidence? Personally if i had a choice, i would pick food allergies (maybe not the bladder disease though) over acne. I guess people dont understand accutane is not a perfect cure. Some cases are give and take cases. You give up ur acne, and take some side effects. I would rather have any minor internal problem then have acne. If i could trade my acne for food allergies right now, id do it.

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Let me add that these aren't "diseases"... they're conditions/syndromes, which some in the medical community don't even think warrant anything more than an anti-depressant to treat. Some don't even think they're real conditions, and probably for good reason.

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Another one-post wonder. Hm, well, I'm sorry it didn't work out for you, and I also wonder why you didn't just get off of it after a month if it was causing such pain and misery.

It took me several months to realize that my asthma/wheezing was directly related to certain foods. Especially foods high in Vitamin A. My body started recognizing this as "the enemy" because I had basically overdosed on it with the Accutane.

the packaging says avoid vitamin A.

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Another one-post wonder. Hm, well, I'm sorry it didn't work out for you, and I also wonder why you didn't just get off of it after a month if it was causing such pain and misery.

It took me several months to realize that my asthma/wheezing was directly related to certain foods. Especially foods high in Vitamin A. My body started recognizing this as "the enemy" because I had basically overdosed on it with the Accutane.

the packaging says avoid vitamin A.

Just to clarify, my vitamin A allergy didn't begin until after I completed treatement. My allergies DURING treatment had no rhyme or reason.

Jeffrey and Vicki, sorry to hear you had a bad experience with it as well. I think we all go into accutane treatment with so much HOPE that it will improve our whole attitude in general because we won't be so self conscious.

GUitar_skinz, the diseases I have are 100% real. I didn't imagine them any more than I *imagined* the acne, or a diabetic *imagines* diabetes, I'm not just on anti-depressants for my ailments. I have to take Elmiron, Atarax, despiramine, Norco/Vicodin, MSContin (morphine sulfate), and diazepam.

Thanks again Frankie!! You have a good head on your shoulders. No, I didn't take antibiotics, not frequently anyhow.........the fibro is definately questionable. I'd say, if someone took accutane and still has joint/muscle pain a year after stopping treatment, they should probably see a rheumatologist. It should GO away within a year.

I can't think of anything else besides the accutane that would've trashed my bladder. I've never smoked, drank, drugs......anything like that! I was a good girl that was just really deppressed over my acne. :(

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I can't think of anything else besides the accutane that would've trashed my bladder

This syndrome is not confined to ex-Accutane users is it? Don't some people just get it because they get it?

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