Accutane Long Term Side Effects (Page 14)
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I have a son that took accutane 60 mg a day for six months in a row three years ago. Now after many trips to doctors over strange medical problems, it seems accuatne is the culprit medication that has caused servere joint and muscle pain, severe dry lips, redness in face, eye infections of own immune system attacking itself, systems of osteoarthritis in both shoulders, both wrist and right hand, blood in stool, possible hair loss, abnormal liver function test results in AST and ALT. My son went from being a high school football and track athlete while taking this medication three years ago to someone that is in constant pain just washing a car. After I have researched this drug extensively, I can't believe that the FDA allows this drug originally made for cancer patients to be marketed for teenagers with acne. All one has to do is look online what vitamin A overdose does to someone and then you have the results of what this medication has done to my son. This drug needs to be taken off them market ASAP and the drug companies that make it need to compensate all teenagers that they have possible ruined their future. Shame on them! What is going on here?

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@ALongTermAcccutaneUserWhoHaSufferedNoSeriousSideFX

I agree with you 100%

Acne is a very dangerous disease. you are not superficial... but accutane can be very dangerous too.

Only one who had this know how bad it is. I complain about accutante long term sides but I dont know with I could deal with my acne forever, I am near suicide. But I had a very bad case. I had very bad cystic acne in all torso, legs, arms, face and I think it could be controlled with low dose during short duration to not expose me to serious sides.

Accutane is to be reserved to bad cases with low doses and Doctors must educated about the sides of accutane which I dont think they are.

I dont know if exist some kind of association of people that suffers from acne/accutane sides... I think it is a important thing... everybody supporting everybody

Thanks for expose your case and opinion!

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Thank you for your response; I am sorry to read of your difficulty. I must say tho I've exercised regularly over the entire time I've used Isotretinoin - literally decades - w/o any joint discomfort. Dry lips are the only side-effect experienced and easily addressed with chapstick.

I of course take all who have reported negative bone & joint effects at their word but only report my own experience that that is not the case.

In my opinion - admittedly one of someone perhaps not as emotionally strong as most - the psychological aspects of problem skin are EVERY bit as much the difficulty faced as the physical part.

While on pill form Rx, it is not an exaggeration to say Isotretinoin completely defeats whatever bacteria that cause the trouble. Presently the only available Rx offered - by my present DermDoctor who has taken over my retired Dr's patient load - is topical and every morning new flare-up (or 2-3) show. It is both frustrating and disheartening. And effects my attitude of getting thru the day SIGNIFICANTLY.

It is not an exaggeration to say my psychological well-being is directly 100% correlated to the condition of my skin. Superficial on my part? I can't quarrel that but it is also truth.

I am fully aware of the serious nature of the drug Isotretinoin and am MORE than willing to accept the trade-offs involved with taking it. I have been doing so - again - for literally decades.

I doubt I am the only person suffering the scourge of troubled skin who feels this adament about the benefits of long-term use, it but if so, so be it. I don't know who even reads this chat thread as I only found it yesterday. It does provide an appreciated outlet to discuss or at least write about living with this debilitaiting condition. (Altho as I say most all people must cope with some physical ailment)

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Accutane woke me up in more ways than one....

I originally took Accutane for Severe Scalp Acne/Back Acne/Oily Skin Large Pores, which was "fixed" however...

As a fortunate side effect of taking Accutane in 2009.....

Accutane caused my cerebellar tonsils to shrink, recede OR it adjusted the skull causing my Arnold-Chiari Malformation Type 1 to go away.

From my radiologist scan in 2006, before accutane:

"Multiplanar MRI of the brain reveals the cerebellar tonsils to extend 7mm inferior to the foramen magnum to the level of the posterior arch of C1. Cine CSF Flow studies showed the flow dorsal to the cerebellar tonsils is dampened on all three series"

In 2011 after accutane, my radiologist said I had no more Arnold-Chiari Malformation.

This is not heard of before, this condition can ONLY BE FIXED VIA BRAIN DECOMPRESSION SURGERY.

I am now fixed of my symptoms which included:

-dizziness

-loss of consciousness when bending neck backward or body is upside down

-major headaches and migraines

-chronic fatigue

-leg numbness / falling asleep constantly

HOWEVER: For people that did not have my condition, this is living proof that Accutane makes full physical contact with your brain. There is no debate, this ends it. So you take your risks of acne versus brain damage. Even though it helped an existing condition of mine that I wasn't expecting. What will it do to you?

I quit the drug early because of Knee / Back Pain, Constipation, and Severe Depression and Suicidal thoughts.

When I took Accutane:

Age: 19

Weight: 190

Height: 5'9

Brand: Clavaris

Dose: 40mg twice a day morning and night = 80mg total.

Took for two months before stopping due to side effects.

My Side Effects from Accutane as of December 2014:

-Dry Skin

-Dry Thinning Hair

-Hair Loss ( on and off)

- Changes to Hair Texture: My hair all over my body turn Curly, causing ingrown hair issues more than ever.

-Dry Eyes (sometimes they are in the way, my eyes are never white - always some pinkness or eye irritation)

-Dry Lips

-Eye floaters

- Night Vision reduced (visual snow, Blacks are fuzzy even during day time)

-Older than my age look

- Light Sensitivity / After image burn in easily

-Skin tone is more pale white, hardly can get a tan for some reason.

- Changes in Body Temperature, Sometimes feet are ice cold, other parts of my body are warm.

-Eyes: Staring at a computer monitor for to long I see flicker rate bars on my monitor (no joke)

-Rectal Bleeding

-Hemorrhoids (recently have these removed via Banding, my bowel movements have improved 90%, no more bleeding)

-Constipation

- Receding Gums (teeth sensitive as a result)

- TMJ / Jaw clicking (hurts to yawn sometimes)

- Disc Bulges / Low and Mid back pain. (the biggest side effect, the reason I was able to qualify for Medical MJ)

- Cracking joints such as Knees and thumbs. (loud knee cracks, thumbs always want to crack)

- Low Libido

-Depression (probably because I am dealing with all the above)

-Lack of Dreams (fixed with small supplementation of 1mg of Melatonin)

-Dry Crusty Mucus inside of Nose

-Hand Ecezma, Arm Ecezma, really bad in the winter. (hemp salve works great to moisturize)

-Dryness around Nostrils.

-Dryness patches one or two small ones on beard growth areas.

- Lips always chapped. This might be permanent as no oils have worked yet. Chap stick WILL make it worse.

Diagnostics done on side effects:

-Telomeres analyzed through SpectraCell Labs in Houston, TX: The Telomeres are shorter. I am 25 Year Old however, the read out says I am roughly 30 Years old. (telomere shortening confirmed? Epigentic Changes?!) spectracell.com/patients/patient-genetics-intro-page

-MicroNutrient deficiencies. Which said I was low in Vitamin C, Alpha Lipoic Acid, Molybdenum. For vitamin A it said I had normal levels.

-Semen Analysis: I am fine, I am potent with 130 million sperm count, everything is fine there.

-Ultrasound of Prostate: I am fine there.

-Adrenal Cortisol: Very Low Cortisol levels upon rising, ok mid day then drop at night.

-MRI of Brain done for an issue I had before accutane, however nothing bad was found there.

-General bloodwork came back normal, liver bloodwork normal.

-Analyzed blood for testosterone total and estrogen. Total Testosterone is 600 (I am Age 25) Estrogen was HIGH at 180 points need to get that down by 70 points.

-Tested the Stool: No H. Pylori Bacteria Found, No Celiac Disease, No Parasites - Beneficial Bactera was OK. Probiotics suggested for IBS Symptoms.

-Heavy Metal diagnostic done: No heavy metals, copper levels normal. All levels normal.

-U/A's are fine.

-Bone Marrow Density: I'm fine, perfect density.

-Growth Hormone: I am fine, nothing out of place there.

What I have done so far to help side effects:

-30 Day Juice Fast (celery, apple, kale, cucumber, ginger, tumeric, parsley, cilantro, basil, mint)

-Use a masticating juicer, slow turning, low heat, doesn't kill as many enzymes, more juice yield.

-Topical Cayanne Pepper for Hair Growth

-Avoid Alcohol

-Hemp Seed Oil

-Medical Cannabis Edibles, Medical Cannabis Bud (big improvement in libido, brain chemistry and depression)

-The Master Cleanse 15 Day Fast (Cayanne, Lemons, Maple Syrup)

-Colonics (total is six now)

-Salt Water Flush

-Abstraining from Vitamin A

-$10,000+ dollars on Supplements from Anti-aging Reservatol to Nootropics (brain supplements)

-MRI of spine showing the Disc Bulges

-Ultra sound of abdomen showing no inflammation.

-Colonscopy revealed three Hemmroids which was causing my IBS and Rectal Bleeding, these were banded. IBS has improved by 50%

-Endoscopy revealed Grade B erosive esophogus from Acid Reflux. I believe this was caused by lack of muscle tension in my stomach region.

Still to do:

-Hair Analysis

-MPOD Eye exam (checks for eye protein levels)

-Rick Simpson Oil (hard to find, probably have to make my own)

-Liver Flush

-Kidney Flush

-Gallbladder Flush

-IGF-1 inj's.

-B12 inj's.

-HGH inj's.

-TRT inj's.

-Hulda Clark Zapper

Final Thoughts:

I hope everyone gets well. Our health WAS robbed from us. The cure to all this corruption on Earth is TRUTH.

We are being poisoned in more ways than one. And Accutane woke me up.

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

More information on my previous condition Arnold-Chiari Malformation Type 1:

conquerchiari.org/education/chiari-faqs.html

chiariinstitute.com/chiari_malformation.html

en.wikipedia.org/wiki/Arnold%E2%80%93Chiari_malformation

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In my opinion the majority of the people who use accutane dont have long term sides but there is percentage , (0,1% or1% or 10%???) that have long term sides, who knows how many?

Accutane is a very eficient drug, I agree with you, it is near a miracle drug, all people who had acne and used accutane knows that... I wish someday someone invent a "accutane" without sides or a topic "accutane" that is eficient like the pill "accutane"

I saw a pattern in this long term side patients:

1 - Usualy they use high doses protocol 60, 80, 100 mg.
2 - They use accutane for long time (more than 4 months) or doing several treatments.
3 - Doing accutane while doing physical exercise.

Using accutane, every year, like that protocol you are doing is not wise, it is "playing with devil"... Stop now that, Not worth the risk...

I understand your suffering... I had pretty bad bad cystic acne in the past , I had acne in my face, neck, shoulder, back,chest, inguinal region, legs and arms, I was near suicide because of that, accutane was the only solution to me.

but why use the doctor prescribed 60, 80 mg in my case? why he did not recommend me not to exercise during the treatment? Now I had near no acne, but with joint pain all time... I cant exercise anymore... Its sad...

My conclusion is that Doctors are not educated enough about accutane sides...about the dose to use... to stay with low dose for short duration... to tell the patients to stop the treatment if they have some minor joint pain, depression or digestive disorder... to not exercise during the treatment...

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I'm nearing 58 and have taken Accutane (or its generic substitute) since the 1980s.
In my opinion it is a miracle drug. And well worth - every bit - worth the trade-offs that go with with its use.

The emotional pain one must deal with suffering problem skin is every bit as debilitating as the physical pain. In truth - in my opinion - worse much worse - low self-esteem and depression. Accutane has allowed my me life and while that may sound like a dramatic over-exaggeration, it is not.

So yes Accutane is a serious drug but while using it, it has in my case completely kept in check the withering psychological difficulty faced suffering the scourge of problem skin.

My dermatologist has recently retired and the dr who took over patients will not continue the - admittedly unconventional - treatment program used (60 count 40mg Rx used 2-3 times/week as needed & refilled 2-3 times/year.)

I now use a topical Isotretinoin that that does not work nearly as effectively and this does effect my ability to live my life free of the frustration problem skin causes.
We all have our problems tho, I realize.

Thank you for reading this. It is to respond to all the negative posts and offer at least one person's successful experience. I hope to be able to find a new dermatologist but to date haven't. In the meantime it is a day-to-day struggle to deal with. Peace and good luck to all of us.

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I dont understand your question

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With your "legitimate" condition from accutane why would your son take it?

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How does major surgery for no reason pertain to accutane??

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I'm 55 now and have many joint problems and pain from osteoarthritis. My hip was so bad I had to get bone grafts when it was replaced. My son was on it when he was 27 and is now almost 31 and says his bones ached when he was on it & I hope he doesn't have future problems.

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I think that has a connection. All sides related here are related with joints, digestive system and psquiatric disorders, it is not a coincidence and it is not nonsense sides.

How rmuch you use and how long of accutane?

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To Xavier (sorry for the long time to answer):

Did the surgery help you?

Yes and No, but all my lesions was pretty big and was diagnosed by MRI exams

1 - In my hands i had carpal tunnel syndrome, it was caused by synovitis caused by accutane, that was compressing medial nerve in my both hands. The 2 surgeries to remove damaged synovia and descompress medial nerve was a complete sucess.

2 - In my both shoulders i had my acromion clavicular destroyed by both accutane and heavy weight lifting. The 2 surgeries was a complete sucess, only minor pain in my left shoulder.

3 - I my both elbows i had synovitis. the results of the surgeries to remove of the damage synovia was not good, i had pain in both elbows, more in right elbow, but i can live with it. I cannot do any exercise that use triceps by now.

I also by now had pain in my low back, in my cervical, in my right hip, but no damage are dettected in MRI. I had also bad sleep and I am fatigue very easy.

Do you think that your paint is getting worse every year, or do you think it has become stabilized?

between improved to estabilized

I suppose that you already have tried all kind of suppements.

Yes. I tried a lot of supplements. No supplement have effects to improve accutane sides, it is a waste. Now I am trying HGH, but its not supplement, it is the growth hormone, but I do not recommend to anybody do this crazy thing.

-------------------------------------------------------------------------------------
To Faith.

Do not worth use accutane. Its a risk and we do not knows what can happens with you. Several studies have shown that isotretinoin induces cell death in various cells in the body. Cell death can occurs in your sebaceous gland cells, which is important for treatment of acne, but may cause cell death in your brain (hippocampus cells) causing depression, psiquiatric disorders, fatigue, in your digestive tract or in your joints.

If you decided to use accutane, stay with very low dose, like 10 mg or 20 mg, for no more than 3 months, stay away of any exercise during use of accutane and 6 months before, and stop the drug it if you had any minor sides related to your joints, digestive tract or psiquiatric.

It is better to live with acne than live with joint pain and fatigue all time.

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I took Accutane when I was in my 20s it did help a lot. I have all the problems that everyone on here is talking about. Sever joint pain, mussel pain, headaches and gastro problems. there is no history like this in my family. I am in my 50s now. Is Accutane at fault I can't be certain. I know I still break out with acne like sores when I eat chocolate. It sucks I love chocolate. I would recommend getting other doctors opinions. I wish we al knew the truth about meds in general. It seems it is hard to trust anything. Good luck and I am sorry I know how you feel.

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Laurie, my back went first then knees and then hips, this all started very shortly after a 6mnths course. I'm only 26. How old are you now?

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I took acutane finally after years of cystic acne in my early 40s. My joints are so bad now I've had a hip replacement and a knee replacement in the last 2 years. My other knee needs replaced too. All my joints are bad and I was diagnosed with osteoarthritis when I went to orthopedic Dr. My hip going bad came out of nowhere. Is there a connection between these problems.

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Definetely no. Probably that will disappear by their own. I would prefer to have double acne than you that suffer joint pain.

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tempted but scared... is accutane worth the risk? I've had acne since I was 9 or 10. When I first got it it was even worse than it is now and I cried every night because I was SO ugly. there was practically a carpet of horrid red bumps surrounding my mouth area and terrible white heads all over my fore head. My skin seemed to be oily and flaky dry at the same time. I wasn't put on Accutane by the dermatologist we went to see then. She prescribed me cortisone and the red acne surrounding my mouth went away in a year or so. In its place came more white heads. Starting high school I started getting really bad black heads and bigger white heads. My face got even oilier but I still experienced dry symptoms.

My acne hasn't let up since I first got it and I've tried just about everything. Sugar-free diet, lactose- free diet, proactive, vitamins, etc.just like everyone else with seemingly incurable acne. I went to see a different dermatologist a month ago and she immediately suggested Accutane. I'm not one to have complete trust in docs and I don't really like drugs in general. I've seen the stories of people who have been permanently damaged and killed by Accutane. My mom still has severe acne as a 40 year old. She says she tried acne at 16 and it didn't work, but she's trying it again now and pressuring me into it.

this is what my face looks like now and 75% of the time:
imgur.com/jZ5jUko

imgur.com/tBzJTXU

imgur.com/shttfF7

This is my clearest skin I've had in the past year
imgur.com/UPWpF1t

I want to take it, my acne really lowers my self-esteem.. but I'm really active and like working out and running... If I got permanent joint pain due to Accutane it would kill me.

Should I take the risk or not?

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Hi Matt,
Not sure who your questions are directed to. Was it to the original post?

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I am curious as to your outcome in this. I'm almost the exact same age and having the exact same problems.

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Couldn't agree more circadian, risking people's health with a drug like accutane for mild and moderate cases of acne to me is just plain madness

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I have taken two courses of Accutane treatement during winter time when I was around 17y.o.

I have had terrible sleep problems to this day (I am 31), unable to get restful sleep at night, even when sleeping for hours on end (12-14 hous). Some of the complications (due to Accutane or lack of good sleep) also included severe IBS, joint and muscle pains, a fragile body that would easily get injured playing football (soccer), allergies / psiorasis.

At around age 27, I started to notice I could get some better sleep by going to bed in the evening but not everyday though. Nevertheless, I heartily welcomed a handful of restorative hours of sleep that I had been deprived of for so many years.

Then, after having run plenty of tests over the years to explain my poor health (tiredness, lethargy, IBS, muscle/joint pains), I finally relented and agreed to a course of SSRI. No more cold sweats at night (body temperature regulation issue), and my state of alertness and lethargy was improved during certain time of the day but still did not offer good night sleep.

Eventually, I started fully experimenting with my bedtime and noticed I could get much better sleep by getting to bed a few hours earlier everyday (3-4.5 hours, i.e. 2 to 3 sleep cycles), basically going around the clock, meaning my circadian rythm is much shorter than 24h. The improved sleep quality greatly reduced my symptoms (IBS, joint/muscle pains) so that I am mostly free of them. But I achieved this at the cost of living an asocial life due to my chaotic sleep pattern.

I guess I wasn't fully aware of the potential long-term effects, both their probability and their severity. And by the looks of it, teenagers/young adults and their parents still aren't to this day. Looking back on it now, my personal view is that psychological counseling would be much more appropriate to help young people go through this difficult time than taking such a risky drug.

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