Accutane Long Term Side Effects (Page 81)

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 After I have researched this drug extensively, I can't believe that the FDA allows this drug originally made for cancer patients to be marketed for teenagers with acne.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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Dr. Steve, I can tell you that like Ernest. I was 23-24 years old when I took Accutane for the same term. My symptoms are identical all the way to the red face. I would have thought I wrote the list my self. My wife couldn't believe how identical the symptoms are to my own. I am now 53. There was no info at that time to know the likely hood of these problems. Unfortunately my son was given Accutane in the service. I did not know they had put him on it. His symptoms have started even younger than mine. disc disease in his 20s he is describing all the same symptoms. mine was first noticed in my 30s. My older son has never taken it he had the same acne problems but lives near home and I had recommended he not take it. Now that he is over 30 his acne has cleared. He does not suffer from any of these problems. Nor did either of my parents.The point to replying to this is I do believe Accutane does cause gastro disorders, joint disorders, headache and focus difficulty too many people that have taken it have the same problems.

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Thanks for considering an alternative view of this situation Dr. Steve.

Apologies for the abrasive tone of my previous post. These types of conversations about Accutane turn into heated and baseless arguments 90% of the time, so I was preparing for the worst unnecessarily.

Totally agree that frequency plays a role, but reporting rate of ADRs to regulatory agencies has been estimated at 10% and lower. This means 1 in 50000 translates to approximately 1 in 5000 real-world occurrences. Someone once said if ADR’s were taken as seriously as automotive safety recalls, isotretinoin would be immediately pulled even though the reported ratio of many side severe side effects is very low. Of course, biological systems are vastly more complex than a car, so there is very little chance or initiative to investigate the potential for causation. Are 1/1000 people poor metabolizers of the drug, in which case dosage could have little impact on severity of side effects? Are 1/1000 genetically prone to being harmed by peripheral effects of the drug? It may never be known because it takes too much money, expertise, and effort.

I sympathize that you have many patients with severe acne whose social lives were greatly improved by the drug, and won’t argue that it isn’t the most effective acne treatment on the market. There are some who claim their side effects were worth it, even patients who say they developed severe joint pains, fatigue, and even permanently lowered libido and erectile dysfunction during treatment.

My prescription for Accutane was written out in the late 90s as a first-line treatment for a problem I considered a minor annoyance. I went straight from benzoyl peroxide to a relatively low dose of a drug used in chemotherapy. You must understand that I personally feel as if I am treated as human garbage because my response to a drug prescribed off-label for moderate acne was extremely negative and I was not properly warned.

Hopefully there will soon be an acne medication as effective as Accutane that is actually safe, but until the reports of the most severe and persistent side effects are taken at value, there is no motivation to develop such treatments.

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From my own daughters experience, her severe rheumatoid arthritis didn't start until 2 and 1/2 years after she stopped taking Accutane. Since the acne was resolved, there was no need to see her dermatologist about the RA. We never considered it might be related. She was 18 at the time and has just started her junior year in college. My older daughter has RA as well and was diagnosed in her mid 20's. She also was on Accutane. No one on either side of my family has this and we've racked our brain trying to figure out why these 2 girls have it. It dawned on me that the only common denominator was that they both took Accutane. The pain is so severe she may have to drop out of school. It is not getting any better, only worse. She has been on methotrexate for 6 mo. which put her in remission but is now having a full blown RA attack.

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I took accutane when I was 17 yrs old for 6 months, I initially thought the treatment went well as my skin looked great and I only had a few minor lingering side effects, however in the months after taking accutane I began to experience very severe back pain, extreme stomach pain, difficulty in keeping erections and extremely sore, light sensitive eyes. Around 1yr after taking accutane the skin on my arms and legs began flaking and became very dry and scaly. Shortly after this I developed seborrheic derm and my face started to become extremely dry. For years I expected these problems to fade away but here I am 10yrs later and the problems are worse than ever, I have severe pain along my entire spine, in my hips and knees and chronic body wide dryness and fatigue. My point is dr Steve that accutane can have severe latent side effects that have nothing to do with dermatology and the derm who treated me has no idea of my situation. I'm sure you haven't spoken with everyone whom you gave accutane so perhaps you do have patients who are struggling with there health because of accutane. I understand that severe sides from accutane are very rare but obviously they do happen and when they do they are truly devastating. The only thing harder than long term accutane side effects is knowing deep down what destroyed your body only to be laughed out every doctors office you go to. The culture of deniability among the medical profession in regards to long term accutane side effects needs to change, more tests need doing and above all prescribing guidelines for the drug need to be tightened further. I don't believe anyone with mild or moderate acne should be allowed this drug. For this kind of acne the risks completely outweigh the benefits and if anyone is suicidal over mild/ moderate acne they need counselling not chemotherapy. The availability and misinformation around this drug astounds me. Most of the doctors I've spoken to have had no idea accutane is used in chemotherapy it's crazy. I think it will be many years before the mechanism of accutane and it's full range of biological effects are understood. How strange a drug is that can be tolerated well by so many and received so terribly by such a fractional minority.

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Bill,
In medicine when we hear a statistic like," this side effect is rare, it affects only one in 20,000 people" we say wow thats great.....unless you are that one person. It seems you and your son are that one person as well as other people on this message board. Studies are limited by their size, and what they are looking for. They can only be so big and can therefore miss the very rare subtypes of patients who have a severe side effects. Due to the widespread distribution of retinoid receptors it is certainly possible a small number of patients with a certain genetic subtype have real problems with this medication long term and suffer wide ranging side effects. This is something we suspect but cannot prove yet and dont' know how to screen these people out. The questions is HOW DO WE KNOW WHO THESE PATIENTS ARE? THIS IS WHERE I NEED HELP FROM PEOPLE ON THIS MESSAGE BOARD WHO HAVE HAD LONG TERM SIDE EFFECTS!

Since there is no way to know beforehand how a person will react to accutane, unless a family member took it and had bad results the only other clues would be how the person responds to treatment. IF YOU HAVE HAD PERMANENT SIDE EFFECTS FROM THIS MEDICATION PLEASE ANSWER TO ME THE FOLLOWING QUESTIONS. YOUR INPUT COULD POSSIBLY HELP A FUTURE PATIENT JUST LIKE YOU IF I CAN IDENTIFY THESE PATIENTS EARLY AND STOP TREATMENT.

1. WHAT DOSE DID YOU TAKE AND HOW LONG
2. WHAT SYMPOTMS DID YOU EXPERIENCE, HOW EARLY DID THESE SYMPTOMS START AND HOW SEVERE WERE THEY?

Thank you for your help and please be as detailed as possible.

Dr. Steve

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Ruby,

You really just need to go to a different dermatologist. Someone who listens to you, answers you questions and explains treatment options. It is sometimes hard for patients to be assertive with doctors because they are the doctor and they know what is best for you but as you have seen, some are just insensitive people trying to get through their workday as fast as possible. Find someone else, come in with a list of questions, if the doctors answers them all and is patient and caring then you have found a good one. Sorry there is not much I can do just looking at a picture. Good luck

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Dr Steve,
To answer some of your questions....My son took 60 mg of of Amnesteem ( 20mg morning/40 mg evening ) for 6 months when is was 14-25 years old. His story is the first listed in this post of his side effects. During the last month of his treatment he was rushed to ER during High School Track Event due to turming pale and feeling like he was going to pass out. ER diagnostics reveal nothing but blood in his stool. Drug Manufacturer was contacted by his Dermatologist and responded with letter admitting Amnesteem had completely dried his colon out. His is now 23 year old with arthritic changes in both wrist, both shoulders and right hand. He had Compartment Syndrome surgery on his right leg 4 years ago. Doctors have absolutely no clue why he developed it. His pain level everyday is always from a 1-5 on a scale of ten everyday. He is very limited with his physical ability since taken Amnesteem. Although colonoscopy was negative 4 years ago, he has many signs of IBS. Unfortunately he was recently hit head on in a car accident with both knee's injured. Previous "side effects" from Amnesteem will haunt his daily health for the rest of his life. Look in this post for anything wrote by Scott and you will find more detail. It is nice to finally see a Doctor on this post. Hopefully you will be able to give good insight on the possible side effects of these drugs.
Scott

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Dr. Steve,

In regards to your query, I was on Accutane at 19, roughly 180lbs 30mg for a month then 60mg for four. My dermatologist stopped treatment claiming success. I was side effect free with the exception of dry skin / hair / lips which all went back to normal about a month after treatment.

I received a second round several years later. Still roughly 180lbs 40mg for a month, 80mg for two months and 100mg for three months. During this time I developed the usual side effects as well as migraines, hip pain and blepheritis which persist to this day. I had no history of any of the three until my second course.

I believe the difference lies in the pill itself and the inactive ingredients as well as the dosing. The first, I took Accutane and the generic Sortret. My second course was generic Claravis and an enormous purple pill whose shelf name I can't recall.

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Scott and anyone else who will reply with with long term side effect from accutane. I did not mention in my original post but please if you LIST YOUR WEIGHT at the time you took it as well as the mg of medication daily and duration if you can remember all that. Of course all the side effects and when you had them. I am trying to find a pattern that might help me and my colleagues identify people and or dosages that are more likely to have long term side effects.

Thank you for your help!

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Thank you Seeking Recognition,

Your right about the culture of medicine. I am trying to find some pattern in patients who have had long term side effects so they can be avoided in the future. Can you please tell me your weight at the time you took it and how many MG for how long??? That would be great.

Thanks

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Dr Steve, I weighed around 70 kg at the time so I think I was given 80mg a day, unfortunately I'm not 100% sure. I took this for 6mnths. I can't help but think if I was on 40mg a day like you prescribe I probably would be fine today.

As for my side effects whilst on the drug I had extremely dry lips, skin was red to the touch and dry, very mild stiffness in the joints and muscles and I noticed the ED problems in the 4th month. But like I said in my previous post the more severe sides appeared in the 6mnths post accutane , severe mood swings and depression, severe back pain, very short temper , stomach and chest pains, and very sore light sensitive eyes, to this day my night vision is appalling. Around 1 yr after accutane my skin started drying out everywhere. Whilst on the drug I felt like I had no indication that I was having a severe reaction to it.

Jessa- I don't think it's the pill ingredients, it's the cumulative dose. Every body's chemical make up is vastly different so it takes vastly different doses to induce the severe side effects. Countless times I've read about people who took one 6 month dose of accutane with out problems only to encounter severe sides on there second course. Some people get permanent sides from one month of 20mgs. I think anyone with fair fragile skin or anyone with a family history depression or anxiety or any type of arthritis and muscle disorders should definately stay well away from accutane. Taking accutane is a huge gamble I wish I never took, not that I knew it at the time.

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Dr. Steve 185 lbs. 80 MG a day ( 20 MG morning/4G at night). 6 months total. Side effects listed in last post.

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Hi Dr. Steve,

I took accutane back in September 2012. I took it for 10days at 20mg/day.

I got severe GI problems, severe emotional blunting (anhedonia), severe ED, genital anaesthesia and no libido.

Here is my research in regards to the sexual effects:

"Isotretinoin (Accutane) direct link to ED

Hogan, C., Le Noury, J., Healy, D., & Mangin, D. (2014). One hundred and twenty cases of enduring sexual dysfunction following treatment. The International Journal of Risk and Safety in Medicine, 26(2), 109-116.

“The availability of 120 reports from over 20 countries add to the case for the validity of the syndrome. This is severe and enduring condition can result in death. An understanding of its physiology and an approach to treatment are needed.”

Note: This includes finasteride and SSRI’s alongside isotretinoin.

5-alpha-reductase activity & ED

Gur, S., Kadowitz, P. J., & Hellstrom, W. J. (2013). Effects of 5-alpha reductase inhibitors on erectile function, libido, and ability to climax. Expert opinion on drug safety, 12(1), 81-90.

Clinical trials with 5ARI report prevalence rates of de novo ED of 5 - 9%. Decreased circulating DHT resulting from 5ARI use is associated with diminished libido and/or orgasm. The presence of adverse sexual effects is associated with decreased self-esteem, quality of life and ability to maintain an intimate relationship. Inhibition of 5ARI additionally influences progesterone and DOC levels and may alter psychological functions, including increased depression, melancholy and loss of general well being.

Di Loreto C, La Marra F, Mazzon G, Belgrano E, Trombetta C, Cauci S. (2014). Immunohistochemical evaluation of androgen receptor and nerve structure density in human prepuce from patients with persistent sexual side effects after finasteride use for androgenetic alopecia. PLoS One. 2014 Jun 24;9(6):e100237. doi: 10.1371/journal.pone.0100237.

• Finasteride is an inhibitor of 5-a-reductase used against male androgenetic alopecia (AGA). Reported side effects of finasteride comprise sexual dysfunction including ED, male infertility, and loss of libido. Recently these effects were described as persistent in some subjects.
• Our findings revealed that modulation of local AR levels might be implicated in long-term side effects of finasteride use.

Boudou, P., Soliman, H., Chivot, M., Villette, J. M., Vexiau, P., Belanger, A., & Fiet, J. (1995). Effect of oral isotretinoin treatment on skin androgen receptor levels in male acneic patients. Journal of Clinical Endocrinology & Metabolism,80(4), 1158-1161.

Excerpt: "The present study clearly demonstrated a decrease in androgen receptor binding capacity... The isotretinoin-receptor complex may interact with cis-acting response elements in the promoter region of regulated genes, repressing the gene transcription encoding for the androgen receptor, the gene transcription encoding for the 5-alpha-reductase activity, or both transcriptions simultaneously.

Öztekin, Ç. V., Gur, S., Abdulkadir, N. A., Lokman, U., Akdemir, A. Ö., Cetinkaya, M., & Hellstrom, W. J. (2012). Incomplete Recovery of Erectile Function in Rat after Discontinuation of Dual 5-Alpha Reductase Inhibitor Therapy. Journal of Sexual Medicine, 9(7), 1773-1781.

In vivo erectile activity (intracavernosal pressure [ICP]/mean arterial pressure [MAP] and total ICP) in treatment groups were significantly decreased compared with controls

Traish, A. M., Hassani, J., Guay, A. T., Zitzmann, M., & Hansen, M. L. (2011). Adverse Side Effects of 5a-Reductase Inhibitors Therapy: Persistent Diminished Libido and ED and Depression in a Subset of Patients. The journal of sexual medicine, 8(3), 872-884.

Prolonged adverse effects on sexual function such as ED and diminished libido are reported by a subset of men

Case study within this study;

“In 1999, a 24-year-old male was diagnosed with androgenetic alopecia (AGA). He had normal stature (height, 182 cm; weight, 80 kg), had no history of any medical illness, and was not taking any medications. He reported having a normal libido and normal erectile capacity. He started treatment with finasteride (Propecia™), 1 mg daily, and within 2–5 days experienced soreness of the testicles, total lack of libido, and complete inability to achieve an erection. He had difficulty concentrating and felt depressed. Expecting these initial side effects to be temporary, he continued treatment. Except for some improvement of the soreness in the testicles, he felt numbness and there was no improvement in his libido or erectile function. After a little more than 1 month, he discontinued treatment and the side effects diminished to some degree, but sexual function never returned to normal. In the following months and years, the symptoms persisted with loss of libido and ED. In 2003, the patient consulted a specialty clinic for sexual medicine in Boston, MA, USA, and went through extensive examinations. At this point, treatment with Viagra had been tried with only marginal success. Because of hopelessness and depression, two types of antidepressants (citalopram and bupropion) had been prescribed, which helped by “taking away the deepest lows,” but with no improvement in either libido or erectile capacity. In addition, there were undesirable side effects to these medications and treatment was discontinued after several months. In Boston, the patient had a psychological evaluation and underwent duplex Doppler ultrasonography.

Suffering from persistent symptoms of ED, loss of libido, and depression, the patient consulted a clinic in Copenhagen, Denmark, which specializes in testosterone treatment. The total testosterone (T) varied between 22.6 and 14.2 nmol/L (651 and 409 ng/dL) in the baseline state. The fluctuations were felt to be quite wide. No 5 a-dihydrotestosterone (5 a-DHT) measurements were available. The following baseline tests were all found to be normal: sex hormone binding globulin, luteinizing hormone, follicle-stimulating hormone, thyroid-stimulating hormone, T3, T4, prolactin, estradiol, dehydroepiandrosterone sulfate (DHEA-S), and androstenedione. He is currently under no treatment, but 11 years later, he still suffers from ED and loss of libido.”

From scouring the internet for others with Accutane induced sexual dysfunction there are many that resemble this exact symptom set. Hormone testing shows no major abnormality and the individuals appear to be in good health otherwise. It appears from this that individuals have a type of androgenic resistance, thus explaining no help of treatment modalities such as testosterone replacement therapy. Also been noted that Viagra is of little use as the problem is not strictly to do with structural abnormalities such as vascular damage.

Tirado, S. A., & León, D. G. (2005). ED during isotretinoin therapy. Actas urologicas españolas, 29(10), 974.

6 out of 20 (30%) of patients receiving isotretinoin developed ED during the study.

Erdemir, F., Harbin, A., & Hellstrom, W. J. (2008). 5-Alpha Reductase Inhibitors and ED: The Connection. The journal of sexual medicine,5(12), 2917-2924.

The connection between 5ARIs and sexual dysfunction is apparent upon review of the literature.

Propecia:
A medication used to treat hairloss as well as benign prostrate hyperplasia. It is a 5-alpha-reductase type I & II inhibitor and exhibits many similar side effects to isotretinoin in regards to sexual function. Isotretinoin seems to be only a 5AR type I inhibitor thus explaining how isotretinoin can exert only hypogonadal symptoms sexually as opposed to physically observable traits as well. This is due to the differing distributions of type I and II throughout the body.

A hypothesis as to why propecia is far more recognised for its sexual side effects more so than isotretinoin and more money invested into its research is possibly due to the age and thus credibility of victims. Propecia users are generally older men, who are financially stable and more mature than isotretinoin users who are generally to put it bluntly – spotty kids, not known for pro-activity nor being taken seriously in medical matters.

Similar Retinoids Expressing Similar Side Effects

Rossi, M., & Pellegrino, M. (2009). Acitretin-associated ED: a case report. Cases journal, 2(1), 210.

Retinoids have been associated with male reproductive system dysfunctions in human and animal studies. Clinicians should be aware of the possibility of acitretin-induced ED.

Other Hypogonadol Side Effects

Ustun, I., Rifaioglu, E. N., Sen, B. B., Inam, M. U., & Gokce, C. (2013). Gynecomastia: a rare complication of isoretinoin?. Cutaneous and ocular toxicology, 32(1), 93-94.

development of gynecomastia after isotretinoin treatment.

Persistence of Side Effects

Csoka, A. B., & Szyf, M. (2009). Epigenetic side-effects of common pharmaceuticals: a potential new field in medicine and pharmacology. Medical hypotheses, 73(5), 770-780.

Quote;
Here we present the hypothesis that commonly-used pharmaceutical meds can cause such persistent epigenetic changes. Medications may alter epigenetic homeostasis by direct or indirect mechanisms. Direct effects may be caused by medications which affect chromatin architecture or DNA methylation. For example the antihypertensive hydralazine inhibits DNA methylation. An example of an indirectly acting medication is isotretinoin, which has transcription factor activity. A two-tier mechanism is postulated for indirect effects in which acute exposure to a medication influences signaling pathways that may lead to an alteration of transcription factor activity at gene promoters. This stimulation results in the altered expression of receptors, signaling molecules, and other proteins necessary to alter genetic regulatory circuits. With more chronic exposure, cells adapt by an unknown hypothetical process that results in more permanent modifications to DNA methylation and chromatin structure, leading to enduring alteration of a given epigenetic network. Therefore, any epigenetic side-effect caused by a medication may persist after the medication is discontinued.

The following adverse effects have been reported to persist, even after discontinuing therapy, suggesting persistent (or perhaps slowly-reversing) gene expression changes and epigenetic effects: alopecia, arthralgias, ocular abnormalities, inflammatory bowel disease, keloids, osteopenia, hyperlipidemia, ED, and psychiatric disturbances. Isotretinoin is postulated to have complex effects on the brain and central nervous system."??

Effects on Brain (brief)

Melcangi, R. C., Caruso, D., Abbiati, F., Giatti, S., Calabrese, D., Piazza, F., & Cavaletti, G. (2013). Neuroactive Steroid Levels are Modified in Cerebrospinal Fluid and Plasma of Post-Finasteride Patients Showing Persistent Sexual Side Effects and Anxious/Depressive Symptomatology. The journal of sexual medicine, 10(10), 2598-2603.

(Once again a study on propecia, which shares some similar side effects to Accutane which we postulate is due to both acting as 5-alpha-reductase inhibitors)

“the most important finding was the comparison of their neuroactive steroid levels with those of healthy controls. Indeed, decreased levels of tetrahydroprogesterone, isopregnanolone and dihydrotestosterone and increased levels of testosterone and 17ß-estradiol were reported in cerebrospinal fluid of postfinasteride patients. Moreover, decreased levels of dihydroprogesterone and increased levels of 5a-androstane-3a,17ß-diol and 17ß-estradiol were observed in plasma.”

Bremner, J. D., Fani, N., Ashraf, A., Votaw, J. R., Brummer, M. E., Cummins, T., ... & Nemeroff, C. B. (2005). Functional brain imaging alterations in acne patients treated with isotretinoin. American Journal of Psychiatry, 162(5), 983-991.

RESULTS: Isotretinoin but not antibiotic treatment was associated with decreased brain metabolism in the orbitofrontal cortex (–21% change versus 2% change for antibiotic), a brain area known to mediate symptoms of depression.

Kontaxakis, V. P., Skourides, D., Ferentinos, P., Havaki-Kontaxaki, B. J., & Papadimitriou, G. N. (2009). Isotretinoin and psychopathology: a review. Ann Gen Psychiatry, 8(2).

strongly suggests a link between isotretinoin and psychopathology.

Strahan, J. E., & Raimer, S. (2006). Isotretinoin and the controversy of psychiatric adverse effects. International journal of dermatology, 45(7), 789-799.

Isotretinoin disrupts the birth of new hippocampal cells.

Hippocampus is tied to the reward pathway."

This medication is potentially a life ruiner. My sides continued to get worse once I got off the medication before I started to manage some of them more effectively.

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Seeking recognition. Something very interesting about accutane is that .1 mg/kg (yes .1)clears acne as well as 1mg/kg but..... you only get long term remission about 30 percent of the time on .1mg/kg(yes that's 5-10 mg daily depending on body weight.) Now the difference in side effects from .5gm/kg and 1mg/kg is quite large as the side effects are dose dependent. Most people on 1mg/kg are dried out and miserable with a higher amount of "constitutional side effects" (fatigue, joint aches etc). with .5mg/kg people with long term remissions are about 70%. With 1mg/kg, twice as much with twice the side effects, the long term remission rate is just marginally better at 80%.

This is all not common knowledge. You have to dig into the studies to know this or talk to alot of people.

I interviewed a person known "the godfather of acne treatment" he is 75 now and was very involved with accutane trials and guidelines as well as everything else acne, he is dozens of studies. He feels that we are way too concerned about getting the highest remission rates possible and should use lower doses. I agree. Much higher side effects short term and surely higher chances of long term side effects for only a marginal improvement in remission just isn't worth it.

Thanks

Dr. Steve

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Dr Steve,

as a patient who suffers long term side effects from isotretinoine, I will answer your questions in order to help other patients:

1. WHAT DOSE DID YOU TAKE AND HOW LONG

I took 20mg during 1 year. At that time my weight was around 63kg.

2. WHAT SYMPOTMS DID YOU EXPERIENCE, HOW EARLY DID THESE SYMPTOMS START AND HOW SEVERE WERE THEY?

During the treatment I had pain in my Aquiles and dry lips. Since I stopped taking the drug, the Aquiles pain has increased and I have several joint pain in othe parts of my body: lumbars, hands, elbow and knees. My Reumathologist thinks that I am suffering a kind of spondyloarthritis but all diagnostics give a negative result. I can't do any kind of exercise and my life is getting worse every day. I don't think that next year I will be able to keep any job.

Thanks for listening us.
Xavier.

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Hi guys, I would like to share my story and experience with accutane. Unfortunately I believe I am another patient who suffers from suspected long term side effects from taking roaccutane

doses-
Round 1 - 40mg for 7 months ( 2011)
Round 2 - 40 mg for 10 months (2012)
Round 3 - 20mg 2 month (2013)

Side effects suffered during treatments were the usual side effects such as dry lips, headaches, joint pain which went away.

Round 2, more severe side effects such as minor hair loss, nausea, had strange itchy hives which went away and finally intestinal issues (IBS or IBD) . The stomach issue was the final straw and I decided to stop taking the drug . My family had history of stomach issues and I thought it must be that.

Round 3 (December 2013) I was desperate to treat my oily skin and I read on a website about people successfully treating their oily skin with ultra low dose of accutane. I have 1 box left and thought what else could go wrong with me.

After two months, 1 month of 20mg and tapering down to 5mg per week. I started to develop some strange muscle aches and bone creaking around my body. I was getting concerns that these symptoms could be related to the accutane. So in mid February I decide to stop.

3 weeks later a sharp pain started in my left foot (it hurt but it did not swell up). Saw the doctor and foot specialist and no one could say what it was. It was aching pain my left ankle joints or ligament, sometime the pain run up my achillese. I thought it was sporting injuries that fair up again.

Long story short, fast forward 6 months and the pain is still there and now I can feel the aches spreading all around my body :( . My back, my knees, my fingers. All my joints now creaks and its hurts to stand and walk.

I cant sleep now cause my back hurt so much and I feel like its getting worst.

If anyone you guys, share similar experience, I would like to chat via email, you can catch me on {edited for privacy}

I would to get what ever I have diagnosed and get proper treatments!

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I have lower but similar side effects. What is your e-mail address?

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hi xavier,

my email is {edited for privacy}

I been doing abit of research lately, and my symptoms are similar to IBD Crohn's disease > blood in stool, ticked > bloating, ticked > joint pain, definite ticked!

I am going to see a GI and Rheu to see if this is the case.

BTW I weight 76 kg.

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Hi Dr Steve,
I was on a low-average dose of isotretinoin (Claravis, if I remember the 'brand' correctly) for approximately 6-7 months. I had excellent results and had minimal to no side effects/adverse events, and the same continues almost 4 years later. I'm curious to know if you or others have heard of any long-term post-isotretinoin studies/trials monitoring pregnancies and/or births. I took the drug when I was around 22 years old. I am now 27, married, and interested in starting a family within the next couple of years. I'm a little nervous for the possibility of any issues that could come from having taken the drug, but I know the medical field suggests there are no risks post-drug. Thanks!

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I just read the comments for the first time. I have been haveing many of the same problems and was on actane.

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Folks, like everyone else who has started MULTAQ, I am having second thoughts about it's effectiveness. When I first...

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