Accutane Long Term Side Effects (Page 84)

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 After I have researched this drug extensively, I can't believe that the FDA allows this drug originally made for cancer patients to be marketed for teenagers with acne.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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REPORT

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 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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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.

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

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

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I dont understand your question

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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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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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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.

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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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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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@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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Hi, I took 2 courses of Accutane, several months each, years ago. I had to interrupt the second one because Accutane caused severe depression. Some 3 years later I got a neurological issue: my right hand dropped and I lost thumb extension. About a year ago my left hand got affected. I have mobility issues in both hands and severe muscle wasting in hands and forearms. I got diagnosed 1 month ago with MMN, multifocal motor neuropathy, a serious and progressive neuro-muscular disease. The cause is unknown, but I cannot help thinking Accutane caused all this. Now, I must know how to stop the damage and how to clean my system from Accutane, because there is no real, lasting treatment for my diagnosis.

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I'm 20. I took Accutane 3 different sessions. Once at 15 for 6 months,17 for 6 months and currently now .I've had absolutely no problems except dry skin. So it's perfect to me...maybe it depends on the individual but I've taken it 3 different times..maybe u shouldn't just blame accutane.I know plenty of people fine on it. .but there's also people on Crack still living so I guess it's different for each person. I've heard bad side effects of it..but what drug doesn't. .. most drugs on the market have bad effects so u have to decide if it's worth the risk my suggestion is don't give to some one too young like under 16.

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I took Accutane four times in the last five years. I had severe cystic acne on my face, and I can understand how painful it was. Accutane did help me in treating the acne. But I do not think it was a permanent solution. If it was, I would not have to take it three more times. And now I am regretting it.

Right now, I am at the worst health of my life. Last year December, because of back acne, I was put on Accutane by a doctor in India. He told to take it for about six months. during this time I came to US , my employer moved me from India to US.
In about May, I had consumed most of the medication that my doctor in India prescribed to me. To be safe, I went to a dermatologist here, and told them about my medication. They said we are going to start the course again. I was shocked to hear that but I don't know why I agreed. I wanted to get rid of acne forever.

Now after taking the dosage of 80mg for about three months, my bones started to hurt. they used to hurt even before, as I knew accutane caused bone pain and all. But this time pain was almost in every bone. I could not get up after sleeping on a couch. my shoulder would hurt a lot. my arms and worst my back. So I stopped taking the medication and after about two weeks most of the pain in the joints were gone. But back pain became worse. I used to get severe pain in the middle back.

So I started taking ibuprofen. It did help but was not a permanent solution. Long story short, I had to go to E.R. for back pain and they did the CT scan and X-ray. The doctor said , " Your bones look abnormal. You should visit oncologist. Get a bone marrow biopsy. I don't what caused it. May be Cancer or accutane." The word "Cancer" scared the s*** out of me. I almost panicked. Now, I have gone to a doctor and they did my BONE DENSITY SCAN, which came normal. Today I did my Nuclear Bone Scan, and I hope the results would be normal. I saw the images of the bone scan, they do show arthiritis and some of the points and upper back do look brighter, which is abnormality.

I know, I will have to fight myself through this. And my suggestion to people here is, PLEASE DO NOT TAKE ACCUTANE if you have normal acne. You can change your lifestyle to fix it. For severe cystic acne, try anti-biotics. They do help. When nothing, not even topical reitnoids work, then think or talk about ACCUTANE. And do not take it for more than a single course, try some other option.

Please pray for me that everything turns out good.

Thanks.

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I am very sorry to hear that, Adidam. I have severe joint pain and lower back pain because of isotretinoin. The only thing that helps me is naproxeno + paracetamol. However it works 2 weeks until my body gets used to it. Then I stop taking it as much as I can before starting again.

My life has been totally destroyed and I one of those with a normal acne which never should have taken it. But the dermatologhist recommended me and instead, he sent me to hell.

If anyone gets any other solution, please share it. We all know that people post more often in internet when they feel sick. Good luck to everybody.

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I took Accutane too back some 23 years ago. Simply put: don't take it.

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Hi, can you tell us more about the "immune system attacking itself" issue? The reason I'm asking is I have been diagnosed with exactly that - a crippling autoimmune disease, and I suspect accutane was the cause.

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aneczka,

Please read this about auto immune and Accutane: drugwatch.com/accutane/side-effects.php

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