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3 hours ago, Nemesisbrady said:Took it twice in 2009
not sure
6 months first time
then 3 months had to stop elevated enzymes high cholesterol triglycerides
and all my symptoms came at that time
Absolutely no doubt, you are an accutane victim. My really bad symtpoms didn't come until 4th month, my basic bloodwork was still ok, but I crashed heavily. Extreme muscle weakness, dizzyness, ataxia, malaise, headache and more... brain fog, extreme fatigue etc. I was like a dying man, barely able to get up from bed, even hold my spoon.
My suggestion is trying all tests for autoimmunes now.
My liver and kindeys are like a Swiss clock, but it attacked my muscles.
I did 40mg a day, almost full 4 months, then 10mg a day, and I decided to stop altogether. My first issue was dizzyness/ataxia/loss of balance, and my right leg was slightly unccordinated.
My issue is likely accutane induced myositis, but I do have other issues from accutane as well. Since stopping accutane recently, muscles have improved. I did not suffer from much hair loss or stomach issues, but nboody knows what issues can creep later.
12 minutes ago, Gladiatoro said:Accutane is a perfect example of what hapoens when you trust allopathic medicine , asI have often said anything 200 years or newer in medicine is poisonous to the human body.
Your skin might look like porcelain BUT at what cost to the human body is the question.
Side effects will will eventually make there way into your life.
It's not that I distrust medicine, not at all, but accutane is very dangerous- more needs to be done to control this drug and warn people.
I took mino for years- while it has side effects, it worked well and these were never such a big problem. Accutane is another level, you have 200+ side effects, risk is different and possibly-FOR LIFE.
My acne was problematic, really so, and treated in all ways... but doctors are not open on full risks of accutane.
27 minutes ago, fiksi said:Absolutely no doubt, you are an accutane victim. My really bad symtpoms didn't come until 4th month, my basic bloodwork was still ok, but I crashed heavily. Extreme muscle weakness, dizzyness, ataxia, malaise, headache and more... brain fog, extreme fatigue etc. I was like a dying man, barely able to get up from bed, even hold my spoon.My suggestion is trying all tests for autoimmunes now.
My liver and kindeys are like a Swiss clock, but it attacked my muscles.
I did 40mg a day, almost full 4 months, then 10mg a day, and I decided to stop altogether. My first issue was dizzyness/ataxia/loss of balance, and my right leg was slightly unccordinated.
My issue is likely accutane induced myositis, but I do have other issues from accutane as well. Since stopping accutane recently, muscles have improved. I did not suffer from much hair loss or stomach issues, but nboody knows what issues can creep later.
Can someone suggest to me why we need to do autoimmune tests please?
Im asking out of respect and only just did one myself which came back negative. My thinking is all of us will come back with a negative result, so things like Lupus and Sjogrens will be rulled out.
Having said that, we all still tend to Mimic these conditions but Doctors cant act on mimic can they!!??
2 minutes ago, TrueJustice said:Can someone suggest to me why we need to do autoimmune tests please?Im asking out of respect and only just did one myself which came back negative. My thinking is all of us will come back with a negative result, so things like Lupus and Sjogrens will be rulled out.
Having said that, we all still tend to Mimic these conditions but Doctors cant act on mimic can they!!??
The poster above displays many autoimmune symptoms, realyl many!
Accutane is known to affect immune system, and even start things like Crohn's. You will not just "mimic" the disease, but actually develop an issue and possibly antibodies as well.
Some long term accutane issues are likely immune-mediated, as accutane is gone from system... but damage left likely permanent.
4 minutes ago, Gladiatoro said:Remember always read package insert , take poisons at your own risk.And no one forced you to take isotretinoin , you were just not told about 200 or so side effects at the time hmmmm , ok.
You are incentivised to take it, as a "good" solution- and told effects are extremely unlikely, and not long term. But this is not exactly true, is it?
BTW, my problem was not light acne, but rather already a decade+ fight with tough ones.
Does anyone on forum now have Crohns disease??
Are there any reported cases of Accutane causing Crohns
No mimicking- clear cut Crohns disease, Im very curious because thered be medications for this at the very least, and pinpointing something is vital for us to move forward....
17 minutes ago, TrueJustice said:I blame Roche more so than the derms, they produce a product that they themselves dont fully know how it works.
Shouldn't you be blaming the FDA and government regulations? If they deemed it unsafe, then they wouldn't be allowed to market it and sell it.
22 minutes ago, ScarRight said:Shouldn't you be blaming the FDA and government regulations? If they deemed it unsafe, then they wouldn't be allowed to market it and sell it.
Yep they play a role in this too absolutely.
My point was, it all starts with Roche
On 1/19/2018 at 9:19 AM, Gladiatoro said:Everyone I know that took isotretinoin has had chronic systemic dehydration after exposure especially the eyes ,mouth , lips , skin as a permanent side effect of chemotherapy treatment.
Other side effects tend to ease their way into your life down the road , joint pain especially lower back , mental dips etc.
STOP RANTING!! or i will delete every one of your posts. this is not on topic. it is clutteringthethread. you say the same thing OVER and OVER
Im done with this thread anyways, my point was to figure out ALL long term side effects you can delete my posts if you like though , Im moving on with my life , and hopefully other people will benefit from my extensive research on this topic .
Good luck to all and best health in the new year.
On 1/19/2018 at 12:25 AM, flynn said:Hi I heard that someone on this forum made a fully recovery from sexual side effects using Finasteride? Can anyone give me the persons username or link me to the pages where he talk about the recovery.
If there is any evidence of people recovering from sexual side effects from accutane, I think it's a huge positive as it shows condition is reversible. However also don't want false hope, so I'd like to check it out myself.
Also if anyone has any links to forums of other users reporting recoveries could you send them over please
Not to be recommended in my opinion.
[Edited link out]
On 1/20/2018 at 2:19 AM, Perene said:Please read this post before what I am going to say next... I don't want to repeat a ton of information.
More about my case, concerning libido loss:
I got my last blood test results... any thoughts if further tests are needed?
Spermogram: the urologist said there's nothing wrong. Note: all Google Drive links are from the lab. They are written in portuguese.
[Edited link out]
STD tests taken 2 months after the last time I had sex (I waited all this time to make sure they would be accurate). Herpes igG is positive, but I never had any symptoms - it's only there like it is in 2 thirds of the population.
[Edited link out]
First blood tests from August:
[Edited link out]Second blood tests from November, 2017 (remember: I took Accutane for months during 2011):
[Edited link out]And now the last tests:
[Edited link out]From January 15, 2018.
Let's see:
All OK:
Uric Acid, Creatinine, Glucose, Complete Blood Count (why it showed Eosinophilia now? Will check that later), Lipid profile, Free T4, Urea, Aspartate transaminase, Alanine Aminotransferase and Thyroid-Stimulating Hormone (TSH). All of them in the reference ranges from the lab.
************ RELEVANT RESULTS *********
1) Total testosterone:
I said 3.09 in the 1st test, and 4.19 in the 2nd after 3 months taking vitamin D. I am still taking, this time 7000 UI/week and not 14000, for another 3 months (but I have plans to stop taking the supplement, and spend more time outside in the morning).Now: 357 ng/dL. Lab ranges: 175 - 781 ng/dL
2) Free testosterone: 7.21. Lab ranges: Since 2011 it's calculated according to total test. and SHBG levels. According to Vermeulen, A. ET AL., 1999, the ref. ranges are 4.58 - 18.33 ng/dL for men, and 0.03 - 0.95 ng/dL for women.
3) SHBG (1st time I did this test): 32.6 nmol/L. Lab ranges: men from 20 to 50 years old: 13.2 - 89.5 nmol/L.
4) Vitamin D: still at 40's. Now 42.4 ng/mL.
5) Vitamin B-12 (1st time): lag ranges for men: 81 - 488 pg/mL. My result: 449 pg/mL.
6) FSH (1st time): 6.54 mUI/mL. Lag ranges for adult men: 1.27 - 19.26 MUI/ML
7) LH (1st time): 4.61 mUI/mL. Lag ranges for men: 1.24 - 8.62 MUI/ML
8) Gamma-Glutamyl Transferase (GGT) - 1st time: 18 U/L. Ranges: 7 - 45 U/L
9) Prolactin: 28.51 ng/mL. Ranges for men: 2.60 - 13.10 ng/mL. Previous results: 25-25. Once again high prolactin.
10) Zinc (1st time): still waiting for results
Note:
Months ago I also did these two, and they came back OK:
- Abdominal Ultrasound and MRI scan - sella turcica
About additional tests, I am asking if these are necessary to investigate what sort of damage Accutane did, since we are talking about sexual dysfunction:
- Dihydrotestosterone (DHT)
- E2, which measures the amount of estradiol, a form of estrogen
- DHEA-S (dehydroepiandrosterone sulfate)
- Progesterone
- IGF-1 (Insulin-like Growth Factor-1)Like I said, I am going to get to the bottom of this. I was even thinking of testing for other vitamins besides D-3 and B-12...
However I don't know if doing all or any of these is necessary.
*
And now I see the Wikipedia article has been updated on this matter:* WIKIPEDIA: ACCUTANE *
Isotretinoin is also associated with sexual side effects, namely erectile dysfunction and reduced libido.
https://www.medicines.org.uk/emc/medicine/15655
In October 2017, the UK MHRA issued a Drug Safety Update to physicians in response to reports of these problems.
>>>>>> "Drug Safety Update - Latest advice for medicines users - October 2017" (PDF). MHRA. 3 October 2017.
https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/655127/DSU-Oct-pdf.pdfThis was in response to an EU review, published in August 2017, which states that a plausible physiological explanation of these side effects "may be a reduction in plasma testosterone".
The review also stated that "the product information should be updated to include sexual dysfunction including erectile dysfunction and decreased libido as an undesirable effect with an unknown frequency".
http://www.ema.europa.eu/docs/en_GB/document_library/Minutes/2017/09/WC500235426.pdf
There have also been reports of spermatogenesis disorders, such as oligospermia. 27 cases of sexual dysfunction report either negative dechallenge or positive dechallenge.
* WIKIPEDIA: ACCUTANE *
This link:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1472884/Says the following:
>>>>>> Diagnosis of Hypogonadism: Clinical Assessments and Laboratory Tests
In males, serum testosterone levels show a circadian variation, with the highest levels in the morning and lowest levels in the late afternoon. In young men, the variation in testosterone levels is approximately 35%. Although the normal range for serum testosterone might vary between different laboratories, the normal range for early morning total testosterone in healthy adult males is approximately 300 ng/dL to 1000 ng/dL.
If that's the case then my blood tests indicate I have normal levels. But that doesn't mean IDEAL LEVELS, which I assume are in the middle (500, 600), and never 300, 400.
Let's continue:
Prepubertal: Secondary hypogonadism is associated with low levels of testosterone and normal to low levels of LH and FSH.
The signs and symptoms of low testosterone in postpubertal adult males can be more difficult to diagnose and might include loss of libido, erectile dysfunction, diminished intellectual capacity, depression, lethargy, osteoporosis, loss of muscle mass and strength, and some regression of secondary sexual characteristics.
At the initial visit, the first objective is to distinguish between primary gonadal failure, in which low testosterone is accompanied by increased FSH and increased LH, and hypothalamic-pituitary disorders (secondary hypogonadism), with low testosterone and low to normal FSH and LH levels. *
Do I fit in the latter case? Low testosterone levels and LOW TO NORMAL LH and FSH levels?
* Initial laboratory testing should include early morning (8:0010:00 AM) measurement of serum testosterone, prolactin, FSH, and LH levels. For the diagnosis of primary hypogonadism, FSH measurement is particularly important because FSH has a longer half life, is more sensitive, and demonstrates less variability than LH.
The aging male patient can present with signs and symptoms of low testosterone, including loss of libido, erectile dysfunction, diminished intellectual capacity, depression, lethargy, osteoporosis, and loss of muscle mass and strength. At the initial visit, laboratory testing should include early morning (8:0010:00 AM) measurement of serum testosterone. In elderly men, testosterone levels decrease between 15% and 20% over the course of 24 hours. *
OK, I did all those tests early in the morning. I had to wake 2 hours earlier (I usually wake at 8:00 AM), but that was not an issue. As for all low testosterone symptoms I don't think I have any of these, including fatigue. Except for loss of libido. And depression was a symptom I had for a few years after the Accutane treatment. Now it's totally gone.
Total testosterone levels might be normal with hypogonadism if the SHBG levels are increased. Levels of SHBG increase with age, causing a decrease in bioavailable testosterone. If testosterone levels are low-normal but the clinical symptoms and signs indicate hypogonadism, measurement of serum total testosterone levels should be repeated and an SHBG level should be determined. With the total testosterone and SHBG levels, a bioavailable testosterone value can be calculated. A bioavailable testosterone calculator is available at www.issam.ch/freetesto.htm.
It is usually not necessary to determine FSH or LH levels in the aging male. ***
And the article continues, explaining more about total/free test. and SHBG.
* In selected patients, FSH, LH, and prolactin can be measured. If the FSH and LH levels are raised, this suggests a primary testicular cause, and if levels are low or normal, a hypothalamic or pituitary cause should be considered. A raised prolactin level suggests that further investigation of the pituitary gland should be undertaken. *
The FSH and LH levels are not high. So that rules out the first suggestion.
"A hypothalamic or pituitary cause should be considered" (if the levels are low or normal - THEY ARE NORMAL). What kind of tests should I do to investigate this?
"A raised prolactin level suggests that further investigation of the pituitary gland should be undertaken." (3 different blood tests show exactly THAT. Not that high (25), yet still high for a man).
Hypothalamic or pituitary deficiency might be transitory or permanent. Transient secondary hypogonadism might be related to malnutrition or stress states and can be diagnosed by physical examination and evaluation of the patients growth chart. If permanent hypothalamic or pituitary hormone deficiency is suspected, serum levels of pituitary hormones and magnetic resonance imaging of the brain and pituitary should be obtained to screen for hypothalamic or pituitary disease. **
Malnutrition or stress states?
Does that mean if I change my diet (which is not bad, still I have an appointment with a nutritionist this month, to do a complete overhaul - plus another specialist, to do the same for my workout routine, I go to the gym every day in the morning) I can fix this?
And stress might be related to sleeping 1, 2 hours less? If this is the case, then I can't neglect to inform that I was doing this in the past weeks, prior to this blood test.
"can be diagnosed by physical examination and evaluation of the patients growth chart" (Growth chart?)
"If permanent hypothalamic or pituitary hormone deficiency is suspected, serum levels of pituitary hormones" (Again, what kind of exam? To check these serum levels of pituitary hormones?)
"and magnetic resonance imaging of the brain and pituitary should be obtained"
Didn't I do that already? I said I did a "magnetic resonance imaging of the sella turcica region". Does that cover this suggestion?
"...to screen for hypothalamic or pituitary disease."
*
Although the normal range for serum testosterone might vary between different laboratories, the normal range for early morning testosterone in male adults is approximately 300 ng/dL to 1000 ng/dL. An early morning total serum testosterone level of less than 300 ng/dL clearly indicates hypogonadism, and under most circumstances benefit will be derived from testosterone replacement therapy. A healthy male adult patient with a serum testosterone level greater than 400 ng/dL is unlikely to be testosterone deficient, and therefore clinical judgment should be exercised if he has symptoms suggestive of testosterone deficiency.
*I get it, I predict my testosterone levels will fall in the range of 400 ng/DL in the coming months when I change my lifestyle and spend more time outside (for vitamin D, since this also raises test. levels). I understand that TRT has a lot of issues and should be THE LAST RESORT. Only when all other options have been eliminated, and for TRT if the levels are even lower than mine. I heard people explaining that it's an artificial increase that will trick the body and prevent a natural improvement, it will probably need to continue for the rest of one's life, and there's the expenses and
dependency of taking another S.HIT.The thing is: my actual testosterone levels are not OK by a long shot and anyone that says they are should get punched in the face. Testosterone levels now are lower than ever before:
http://thechart.blogs.cnn.com/2011/08/18/modern-life-rough-on-men/Countless sources will tell that. Meaning we can't say this is OK just because most men are weaklings, because today standards of how masculine (and healthy) we are not the IDEAL ones.
* Hypogonadism can be of hypothalamic-pituitary origin or of testicular origin, or a combination of both, which is increasingly common in the aging male population. It can be easily diagnosed with measurement of the early morning serum total testosterone level, which should be repeated if the value is low. Follicle-stimulating hormone, LH, and prolactin might also need to be measured. If the clinical signs and symptoms suggest hypogonadism but the serum testosterone level is near normal, then assay of serum testosterone should be repeated in conjunction with SHBG because serum testosterone might be normal in the presence of hypogonadism if the SHBG level is raised, which commonly occurs in elderly male patients. ****
Good thorough work her and really great that your getting tests done and sharing results.
Whatever Accutane does, the question is: can it be reverted by taking meds that deal with high prolactin? I am aware of many things we can do on a daily basis to try increasing testosterone levels (and I am doing them), but to deal with loss of libido, like it was said, it seems to me only taking another drug the changes in the body can be significant.
Just like what happenedafter I started taking vitamin D, and testosterone levels increased after months. I know I always neglected this part and never spent much time outside, so in this regard I was never that healthy.
The thing is: solving this and doing other things to benefit my health won't fix this PERMANENT SIDE EFFECT from the Accutane treatment.
I am afraid when it comes to fix the high prolactin this is just like TRT, we can't stop after a while and expect things to adjust themselves.
Look at this message:
https://www.dailystrength.org/group/prolactinoma/discussion/prolactinoma-hasn-t-shrunk-after-cabergoline-help
*****
My understanding is that carbergoline shrinks tumors in only some cases. In many cases, it doesn't shrink the tumor at all but it does regulate the prolactin, and you need to stay on the drugs indefinitely. You can go up much higher on dosage if you tolerate the side effects. I take 1 mg twice a week, and might go up more, because my tumor is resistant to the meds.
If your prolactin is in the normal range, you should be able to get pregnant. You just need to stay on the meds.
Be sure you're seeing a doctor with experience in prolatinomas--a reproductive endocrinologist or an endocrinologist that specializes in pituitary tumors. If he's telling you that the carbergoline should definitely shrink the tumor...that doesn't sound right to me....
*
"Indefinitely".
S.HIT, I knew there was a catch. And I don't expect at least the doctor I am going in to prescribe, he will certainly say 25 is high for a man, but not THAT high.
I saw a scientific article stating the same about how long we need to treat it... can't find the exact link now, yet look at this:
https://emedicine.medscape.com/article/121784-medication
Then there's this thread [Edited link out] where prolactin is discussed, and right in the first page someone has a theory of how Accutane causes the aforementioned sexual dysfunction that doesn't seem to go away.
So, bottom line: most people that lost their libidohave high prolactin or I am the only case presented so far? If most of them have high prolactin then we already know the answer to what needs to be done to fix it.
P.S. Someone at:
https://www.medhelp.org/posts/Mens-Health/Man---21---High-prolactin-levels/show/1655947
Suggested this link:
https://www.menshealthinstitute.org/male-enhancement-how-to-reduce-recovery-time/
Which says the following:
"Vitamin B6 and zinc work hand in hand to manage metabolic processes and to lower prolactin levels"
Do I need to consider taking more supplements besides D-3? That's a very good question and maybe falls under that advice from Dr. Pezzi (book THE SCIENCE OF SEX):
- Try relatively high-dose supplemental vitamin B-6 (but avoid excessive doses that may induce a peripheral neuropathy; see the vitamin B 6 section for more information).
That Medhelp link has some comments saying doctors usually disregard these high prolactin levels... when for a man the range should be between 1 and 17, and the optimal in ng / mL is < 6.
I appreciate any input about this subject... assuming, of course, most Accutane users affected by the same problem also present high levels, and I am not the only case. Somehow I doubt that, considering the explanation given in that Wikipedia article:
**** "This was in response to an EU review, published in August 2017, which states that a plausible physiological explanation of these side effects "may be a reduction in plasma testosterone". *******
How can this happen if prolactin isn't high in all the affected?
Interesting info
As you know, theres 3000 side effects with Accutane, youre concentrating on the brain area, how do you know that gut needs to be fixed first or liver or.......
Can you have what youve just mentioned with prolactin going on whilst at the same time have Crohns disease for example??
Point being its just impossible trying to pinpoint the necessary steps to get out of this shit when all the testing in the world never concludes anything!!
hey guys, i cant read all 598 pages of this thread.
but i am just wondering as i suffer from erectyle disfunction and low libdo 9 months after taking the last pill of accutane.
Has anyone found any way to get libido and sperm production back ?
in those 9 months i had two weeks were everything like it worked before ever taking accuatne, which means there is a possibility to get back to normal but how ? i tried a lot of supplements but idk what else i should try, cause i dont think after 9 months time will heal this by itself
i dont get erections in the morning and sexual erections are quite bad... and there is like no samen at all .. the 2 weeks evverything worked normal there was a lot of sperm... help me please
On 1/21/2018 at 3:35 AM, Gladiatoro said:Im done with this thread anyways, my point was to figure out ALL long term side effects you can delete my posts if you like though , Im moving on with my life , and hopefully other people will benefit from my extensive research on this topic .
Good luck to all and best health in the new year.
Ditto! I'm pretty much done with this thread too, 15,000 posts and sadly very little achieved. I think the fact it's a single thread makes it extremely difficult to have consistent and meaningful discussions, especially with all the recent trolling.
I would suggest anyone suffering with accutane sides to check these forums instead, where it's organised;
[Edited link out]
[Edited link out]
guys, indigorush, who started this thread.. he also suffered from erectile dysfunktion and low libido like i do as well. he hasnt been logged in since 2016... anyone knows if he is healed ? please let me know you could help me so much with your experiences after accutane...
2 minutes ago, Jens22 said:guys, indigorush, who started this thread.. he also suffered from erectile dysfunktion and low libido like i do as well. he hasnt been logged in since 2016... anyone knows if he is healed ? please let me know you could help me so much with your experiences after accutane...
We're all trying to find a solution to these issues (I've been trying for almost 8 years since taking accutane - this thread wouldn't be 15,000 posts long if we had a solution). Check out the links to the forums I posted above.
1 minute ago, tanedout said:We're all trying to find a solution to these issues (I've been trying for almost 8 years since taking accutane - this thread wouldn't be 15,000 posts long if we had a solution). Check out the links to the forums I posted above.
thank you for quick reply, have u ever had some days like me where everything worked normal ? like high libido and morning erections ? cause i had this twice and this should be a sign everything could be good again.. have u also experienced this ?
Amazing how people start blaming the forum cause theres no solution
Those other forums arent any better, 99 percent of the time they only want to deal with sexual sides, I never see them delve into gut, liver issues that much.
What do people expect to find somewhere else that hasnt been discussed here?
@mariovitali
I might be done looking at k2, mk7 for the moment or at least taking a break. I don't like how its been affecting my stomach. It causes bloating that I thought my stomach would adjust to but hasn't, even after many months of supplementation. i'm not sure if there is a previous underlying cause, but I'm going to take a break from it and wait and see.
I'm still not done looking at vitamin K though because here is another striking paper. I'm going to try mk4 for a period of time (15 to 45 mg) in the near future and see how I respond as compared to mk7.
https://www.ncbi.nlm.nih.gov/pubmed/28012893
Matrix gla protein: An extracellular matrix protein regulates myostatin expression in the muscle developmental program.
Skeletal muscle development involves interactions between intracellular and extracellular factors that act in concert to regulate the myogenic process. Matrix gla protein (MGP), a well-known inhibitor of calcification in soft tissues, has been reported to be highly up-regulated during myogenesis.
