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Repairing the long-term damage from Accutane

 
MemberMember
1804
(@truejustice)

Posted : 01/26/2018 11:28 pm

10 hours ago, hatetane said:

Why don't we have doctors like this in the UK? Mentions accutane and towards the end he recommends Niacin for leaky gut etc

Thx for sharing.

Its easy to watch such a video and think yes its all to do with gut, it may well be for some but for me fixing the gut doesnt explain:

chronic dryness
eye floaters
unwanted hair
thinning hair
light sensitivity

Is all this stuff just Chemo side effects, does anyone know?

Plus for me the Gastroenterologist I saw said theres nothing wrong with my gut,
nothing wrong in the sense that theres nothing sinister, that doesnt mean my gut villi are tip top or I dont have leaky gut but how do you really know how good your gut health is??

The fact that my biggest issues are fatigue and depression, should I concentrate on gut or look at those things Perene posts about i.e Testosterone and hormone related stuff.

Ive maintained for a long time that it all starts with the gut but when youve thrown everything at it to improve things and nothing really happens you can see how easy it is to dismiss and move back to hormones and testosterone related stuff.

As the video says, serotonin starts in gut, and serotonin effects mood, thats all well and good but if for example we have elevated serum prolactin levelsas Perenes post hints at, what has this gut to do with gut health??

whats the source of the issue that we all have - gut or endocrine system??

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MemberMember
0
(@abi72)

Posted : 01/27/2018 5:55 am

And most of you agree that accutane should still be available!

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MemberMember
45
(@cnb30)

Posted : 01/27/2018 9:11 am

3 hours ago, hatetane said:

And most of you agree that accutane should still be available!

Im sorry, what? Still be available? I havent gone that mad. This stuff should be banned period.

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MemberMember
60
(@fiksi)

Posted : 01/27/2018 9:49 am

3 hours ago, hatetane said:

And most of you agree that accutane should still be available!

While I think it's a very dangerous drug, it works miracles for some cancers, where death rate is cca 50%... and some other disorders.

On the limit of it, this shouldn't be given for acne, or only very extreme cases.

I think doctors, manual etc. need to be honest with risk of long term effects, and what tehse are- focus on thes emore than dry lips etc. Even if eg every effect is only 5pct likely, 200+ of them, risk is not small at all.

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MemberMember
0
(@abi72)

Posted : 01/27/2018 10:21 am

http://www.blogtalkradio.com/pfsglobal/2015/09/21/ep-33-the-dangers-of-saw-palmetto-with-my-guest-james
Sorry, I know this is very depressing but I still thought i should post it.

I heard another podcast where a doctor had a saw palmetto guy who had PFS and he tested positive for pyrrole.
He treated him and he recovered from PFS but he did go on to say that not all PFS have pyrrole but that they should test for it.
(If I ever find the podcast I will post it)

Everyone should watch this.

http://www.truevitality.com.au/articles/pyrrole-disorder/
Urine KPU test worth doing if anyone interested.

@Trujustice It is not one or the other but both.
Neuro and gastro

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MemberMember
0
(@abi72)

Posted : 01/27/2018 11:13 am

!

On 5/15/2017 at 2:20 PM, Dubya_B said:

@ACCUiTy_drANEThanks for the copy/paste list of emails. You really couldn't have made that any easier. Thanks for contacting them also.

Here is my statement to PRAC:
 
Please, anyone who really cares, do this!
 

On 5/12/2017 at 2:51 AM, ACCUiTy_drANE said:

You are absolutely right. Here is what I sent. Feel free to steal it completely for emailing purposes, edit it down, make changes, or send it to other authority figures or researchers. Alternatively, do it better than me and write your own email with much more emotional appeal:
 

To whom it may concern:
 

It is my understanding that a review will soon be taking place regarding the safety of the pharmaceutical drug Accutane. As a resident of the U.S. who was personally negatively affected by the drug (among many), I would like to provide research and facts to your committee so that this issue can be discussed in the most intelligent way possible.
 

Accutane's Relationship to Psychiatric Issues:
 

- Taking into account FDA's list of top 10 drugs associated with depression, Accutane is the only non-psychoactive drug on that list.

- From 1989 to 2003, Keith Altman, Adverse Drug Reaction Statistics Analyst, found that more patient suicides were associated with Accutane than Prozac. This is an interesting finding since Prozac is a drug given to actual depressed patients.
 

- One study found that 37% of dermatologists believe Accutane can cause psychiatric issues in patients.
 

- Eight years after approval, the FDA actively considered removing Accutane from the market due to its ability to cause birth defect, as well as evidence that it causes psychiatric problems in some. Source: United States Congress House of Representatives Committee on Government Reform

Pharmacological Effects of Accutane:
 

- Patients taking Accutane were found to have decreased bloodflow in the orbitofrontal cortex, a region of the brain implicated in depression.
 

- Patients taking Accutane were found to have increased levels of homocysteine, which is associated with things like aggression and depression.
 

- The Norwegian Medicines Agency has documented lasting neurological symptoms in patients who have taken Accutane. Testing of the brain revealed organic brain damage and reduced blood flow to the frontal lobes.

- In mice, administration of Accutane is may be associated with cellular loss in the hippocampus of the brain. The hippocampus is associated with learning, memory, and depression.
 

- Another study in mice found that Accutane disrupted the ability for mice to learn a spatial radial maze.
 

Lastly on the topic of psychiatric health, I would like to point out that Accutane was originally used as a chemotherapy drug. Clear skin was simply noted as a side effect of the original purpose (cancer-killing). Like any other chemotherapy drug, Accutane's effects are not specific to one region of the body. The following quote explains how Accutane does not only target skin glands. It targets many other systems in the body. :

"We have to appreciate that isotretinoin does not œexclusively targets apoptosis of the sebaceous glands as proapoptotic drug effects have been observed in several unrelated cell systems and explain all adverse effects of isotretinoin and other retinoids. . . . strongly suggests that isotretinoin and its isomerization product ATRA induces upregulation of FoxO-signaling and exerts apoptotic effects in multiple cell types like the muscle, the bone and the brain."
 

Sexual Side Effects:
 

Briefly, allow me to shift to the topic of sexual side effects. Health Canada recently issued a statement stating Accutane may be associated with sexual dysfunction in some. This is supported by patient reports, and some studies noting a decrease in a number of pituitary hormones in patients taking Accutane. It seems other health regulatory agencies have been slower to acknowledge this devastating effect. This is similar to what happened in 1997 when France added a warning that Accutane may be associated with suicide, and other regulatory agencies were unaware until some time later. I would be saddened to see a similar information gap occur between countries for the issue of sexual side effects.
 

My Broader Reason for this Letter:
 

I convey all of this information because the issues of psychiatric and sexual health are very personal. In the case of sexual health, it appears many regulatory agencies have failed to warn patients at all of Accutane's potential to cause issues. In the case of psychiatric health, many warnings exist. However, that does not change the fact that many patients are left suffering after quitting the drug. The FDA does acknowledge that quitting the drug after incurring psychiatric issues may not be enough to resolve the issues, based on previous post-marketing research. This is serious because Accutane is often prescribed for acne that is moderate rather than severe. Going forward, as a private citizen of the U.S., I suggest one of two things: 1) Increased regulation on how and when this drug is prescribed. Perhaps it should only be used for severe nodular acne, as originally intended when it was marketed for acne. 2) Increased research into the pharmacological effects of Accutane so that we can understand how and how some people develop persistent problems. In the past, UK MCA and FDA MedWatch estimated that only 10-15% of serious adverse drug reactions are ever reported. This is why it is important to act whenever there is a hint of a problem, especially when it involves the health of people.
 

Thank you for reading. All the best.

cleardot.gif

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Here is the list of contacts hatetane sent me to email:

[email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; @ima.is" rel="">hrefna.gudmundsdottir@ima.is; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; @ms.etat.lu" rel="">Marcel.Bruch@ms.etat.lu; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; @noma.no" rel="">helgahaugom.olsen@noma.no; @noma.no" rel="">kristin.kvande@noma.no; [email protected]; [email protected]; [email protected]; [email protected]; @anm.ro" rel="">roxana.stroe@anm.ro; @anm.ro" rel="">nicolae.fotin@anm.ro; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; @mpa.se" rel="">HPHARMACOVIGILANCE@mpa.se; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; @pei.de" rel="">Brigitte.Keller-Stanislawski@pei.de; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; @online.no" rel="">myhr@online.no

We can't make this any easier. Act.

If Acuitty and Dubya can take the time to do this then you should to.. Leave posting here for an hour and send an email instead!

On 5/15/2017 at 2:20 PM, Dubya_B said:

@ACCUiTy_drANEThanks for the copy/paste list of emails. You really couldn't have made that any easier. Thanks for contacting them also.

Here is my statement to PRAC:
 
Please, anyone who really cares, do this!
 

@ACCUiTy_drANEThanks for the copy/paste list of emails. You really couldn't have made that any easier. Thanks for contacting them also.

Here is my statement to PRAC:
 

Quote

Dear all,

It has recently come to my attention that the European Medicines Agency™s PRAC members will be reviewing the safety profile of RoAccutane.

I must convey my deepest regret in ever taking this medication for such a benign condition as acne. The acne would have likely ended as I grew older but there appears to be no way out from RoAccutane™s effects. I also plead with you to seriously consider the words of those who have lost loved ones to RoAccutane. It is a small representation of the massive amount of damage done.

An MD at a children™s clinic prescribed me Accutane (in the United States) during 1998 for a moderate case of acne. Acne was a secondary concern, which had little impact on my self-esteem and I was not warned of the potential of severe side effects. It was described as an easy cure and offered during the first visit. Within a few weeks of starting the drug, I began to experience depression (unexplained loss of enjoyment in hobbies and social activities to be specific) and noticed my sexual function was beginning to deteriorate. I had lived with acne for 6 years prior without it affecting my feeling of well-being and no association has ever been made between acne and sexual dysfunction.

My health continued to worsen throughout the first course, leading to fatigue and back and muscle pains in addition to the initial symptoms.  After my first course ended, my health gradually improved during several months leading up to a brief second course at a higher dosage since the first failed to cure my acne.
Again, the same symptoms returned during the second course. I became nearly impotent at 18 years old and began thinking of suicide after a few weeks of treatment. The muscle and back pains also returned. I quit the second course short due to a suspicion of Accutane being the cause of these ailments and experienced some fluctuations in the state of my health over the next month, but finally hit rock bottom despite stopping the drug. Of note, the worst of this occurred during the same time my acne cleared.

The symptoms have remained in the 18 years since Accutane. In the beginning, I refused to believe a drug with such atrocious effects would be allowed to be sold to children. I also made the assumption that side effects subside after stopping any medication. I did not report my symptoms to my doctors as side-effects of a drug and looked for other causes for what had happened to me. Terrifying embarrassment prevented me from even mentioning impotence to a doctor until years after it began.

Every practical alternative explanation has been ruled out by  dozens of medical specialists and psychiatrists. I will no longer seek treatment because every treatment has failed. I can only describe my life as a living hell being stuck in my own ruined body, and ruined mind, and understand why so many who have claimed similar problems from RoAccutane have taken their own life. Every romantic relationship has been shameful and troubled because of impotence and lack of lust, I have lost jobs and dropped out of college in the early years due to constantly feeling tired and down, and have no real motivation to continue with life without the ability to feel enjoyment from much of anything. Hanging on for hope of a resolution is beginning to seem frivolous after so much time has passed.

RoAccutane is still being prescribed as a first line of treatment against acne in many cases where it is not warranted, the potential of permanent side-effects is ignored, and the risk of sexual dysfunction is not discussed in the patient information leaflet. Perhaps worst of all, after 30+ years on the market, after hundreds of suicides reported worldwide, and after hundreds of thousands of adverse reactions reported, the systemic effects of the drug are still not understood, especially the effects on the human mind. This has provided a convenient catch-all for denying a possible causal relationship to those who are served by that purpose.

I urge you to take appropriate measures to ensure others are properly warned of the potential severity and permanence of RoAccutane™s side-effects and address the drastically underreported sexual and reproductive side-effects in some way.

I can only imagine how much better my life would have been if my symptoms were recognized as an adverse reaction and treatment stopped at the first signs of a problem.

Sincerely,

xxxxxx    xxxxxx


Please, anyone who really cares, do this!
 
As posted by Dubya on page 498. I had to copy and paste and I couldn't get his post re-posted for some unknown reason.

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MemberMember
0
(@abi72)

Posted : 01/27/2018 11:42 am

w.mhra.gov.uk/home/groups/comms-ic/documents/websiteresources/con2031677.pdf

-------------------------------------------------------------------------------
When is a product acceptably safe? No product is 100 per cent safe, because all products have side effects. These may be very minor, but they may also be serious. For example, cancer treatments may make the difference between living and dying. They can also make patients feel very unwell and increase the chances of infections. Aspirin reduces inflammation and fever. But it can also irritate the lining of the stomach. Different people respond to medicines differently. Several factors can influence the chances of side effects. These include the prescribed dose, the condition being treated, the age and sex of the patient, and other treatments which the patient may be taking, including herbal/ complementary medicines. Medicines are very thoroughly trialled on thousands of people and must meet rigorous standards before they are licensed. When used more generally by a wider population, other side effects can come to light. The key questions for the MHRA are: Do the advantages outweigh the disadvantages of taking the medicine? Does the medicine do the most good for the least harm for most people who will be taking it? Are the side effects acceptable? A high level of side effects may be acceptable for a medicine used to treat a life threatening illness, for example, but not in one used for a common minor ailment. Ultimately, patients and their healthcare professionals have to weigh up the pros and cons of each medicine when deciding on the most appropriate treatment.

----------------------------------------------------------------------------------
The outcry over thalidomide effectively kick-started medicines regulation in the UK. Thalidomide was prescribed during the late 1950s and early 1960s to relieve morning sickness in the first few months of pregnancy, but caused unpredicted serious birth defects. In a bid to prevent a similar occurrence, the Committee on Safety of Drugs was set up in 1963. This subsequently became the Committee on Safety of Medicines (CSM) under the terms of the Medicines Act of 1968, which provided the legal framework for the control of medicines in the UK. In 2005 this committee became the Commission on Human Medicines (CHM).

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Please look at the article. Regulators set up because of the out cry of thalidomide in the 50"s - does anyone think accutane is safer than
thalidomide? If the answer is no then speak out. Just copy and paste the email list above and send 1 email.

Post it on here like Acuitty and Dubya did so that everyone can benefit

Many thanks

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MemberMember
0
(@abi72)

Posted : 01/27/2018 2:54 pm

  • Less than 10 micrograms of HPL per decilitre is normal
  • Between 10 and 20 g/dL of HPL is considered borderline
  • Over 20 g/dL is considered pyroluria

Physical signs & common symptoms2

  • white spots on the fingernails
  • abnormal fat distribution / larger mid-section
  • irritable bowel syndrome
  • delayed onset of puberty / irregular periods / amenorrhea
  • pale skin that burns easily / inability to tan / thin skin / anaemia
  • overcrowded teeth and poor tooth enamel (teeth in upper jaw are often overcrowded)
  • joint pain / creaking knees / cold hands and feet, even in summer
  • anxiety / withdrawal
  • low stress tolerance
  • mood swings / explosive anger / tantrums / aggression / argumentative
  • depression / pessimism / disorganisation
  • reading / mental focus difficulties
  • motion sickness
  • auditory processing disorder
  • memory loss / poor short-term memory
  • insomnia
  • poor or no dream recall
  • fatigue
  • hyperactivity / irritability
  • craving for high-sugar and high-carbohydrate foods
  • poor morning appetite / tendency to skip breakfast
  • frequent infections
  • allergies
  • impotence
  • Hypoglycaemia / glucose intolerance
  • sweet, fruity breath and body odour
  • paranoia / hallucinations
  • seizures
  • intolerance to bright light, loud noises and strong smells
  • [Edited link out]

Concurrent overmethylation or undermethylation

Another consideration in relation to pyroluria is the patient who is also overmethylating or undermethlyating. Treatment for patients with both a methylation problem and a pyrrole disorder is tricky and may take longer to resolve. It is important to recognise when a patient on antidepressants may need to be tested for pyrrole disorder.

A patient who is overmethlyating has a dysfunctional overproduction of serotonin, dopamine and noradrenaline because of too many methyl groups being donated in their system. The overmethylation may be associated with panic, anxiety, anxious depression, hyperactivity, learning disabilities, low motivation, paranoid schizophrenia and hallucinations, chemical/food sensitivities or autism. Below is a short list of possible correlating characteristics:

  • nervousness / anxiety / panic
  • poor achiever / low motivation
  • low libido and fatigue
  • overweight
  • easily frustrated
  • sleep disorders and paranoia
  • depression / self-isolation
  • self-mutilation
  • tinnitus (ringing in the ears)
  • chemical or food sensitivities / allergies
  • high pain threshold
  • ADHD
  • hirsutism (excessive hairiness on women)
  • grandiosity
  • eczema / dry skin
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MemberMember
23
(@perene)

Posted : 01/27/2018 4:06 pm

@TrueJustice

Considering the MANY side effects from this poison I think it's a miracle that I only experienced dry lips during treatment, plus depression for at least 3 years (now there's not a single shred of this, it's completely gone) after it ended, and the loss of libido that for all these years I suspected was only due to my views on women/sex/masturbation/society/etc - psychological reasons. I only found out this forum and all these stories months ago. That's when I started to take a series of blood tests.

Someone mentioned a few other symptoms that affect the eyes in this post:
https://www.medhelp.org/posts/Eye-Care/Help-i-am-concerned-about-my-skin-medication/show/1569321

I found a few studies and articles and will share them here, perhaps some will be useful:

Short-term isotretinoin treatment decreases insulin-like growth factor-1 and insulin-like growth factor binding protein-3 levels: does isotretinoin affect growth hormone physiology? (2010)
[Edited link out]

Persistent_Corneal_Opacity_After_Oral_Isotretinoin_Therapy_for_Acne_-_2000
[Edited link out]

Accutane Defense Win: Court overturns $1 million verdict for lack of evidence (interesting reading, take a look what was the excuse given)
[Edited link out]

Isotretinoin_and_psychopathology_-_a_review_-_2009
[Edited link out]

Isotretinoin_associated_with_craving_for_cigarettes_-_2000
[Edited link out]

(another confirmation that by affecting dopamine isotretinoin causes depression and as a consequence this loss of libido)

Isotretinoin treatment for acne vulgaris and its cutaneous and ocular side-effects - 1999
[Edited link out]

The_association_between_depression_and_isotretinoin_use_in_acne_-_2003
[Edited link out]

The_psychological_and_emotional_impact_of_acne_and_the_effect_of_treatment_with_isotretinoin_-_1999
[Edited link out]

*********
About testosterone, prolactin, vitamin B-6...
*********

Effect_of_Intravenous_Pyridoxine_on_Plasma_Prolactin_in_Hyperprolactinemic_Subjects_-_1978
[Edited link out]

Gambling_-_increased_libido_-_class_effects_of_dopamine_agonists_-_2006
[Edited link out]

Inhibition_of_prolactin_by_pyridoxine_-_1979
[Edited link out]

Is_the_measurement_of_ST_routinely_indicated_in_men_with_ED_-_1999
[Edited link out]

Is_there_any_relation_between_serum_levels_of_TT_and_the_severity_of_ED_-_2002
[Edited link out]

Lack_of_Acute_Effects_of_Pyridoxine_on_Prolactin_Secretion..._-_1978
[Edited link out]

Lack_of_sexual_activity_from_ED_is_associated_with_a_reversible_reduction_in_ST_-_1999
[Edited link out]

Phthalates_might_interfere_with_testicular_function_by_reducing..._-_2015
[Edited link out]

(this oneraises attention to one thing that can lower testosterone levels. About phthalates I suggest reading these sources:)

* Dioxins_and_Health_-_Arnold_Schecter_-_2012
* The_Dirty_Dozen_-_Toxic_Chemicals_and_the_Earths_Future_-_2003
* Toxicants_in_Food_Packaging_and_Household_Plastics_-_Suzanne_M._Snedeker_-_2014
* Not_Just_a_Pretty_Face_-_The_Ugly_Side_of_the_Beauty_Industry_-_2007
* Slow_Death_by_Rubber_Duck_-_How_the_Toxic_Chemistry_of_Everyday..._-_2009
* Toxic_Beauty_-_How_Cosmetics..._-_Samuel_S._Epstein_-_2009
* What's_Gotten_Into_Us_-_Staying_Healthy_in_a_Toxic_World_-_2011
* Toxin_Toxout_-_Getting_Harmful_Chemicals_Out_of_Our_Bodies..._-_2013
* Is_It_Safe_-_BPA_and_the_Struggle_to_Define_the_Safety_of_Chemicals_-_2013
* Estrogeneration_-_How_Estrogenics_Are_Making_You..._-_Anthony_G._Jay_-_2017

Among others.

Pyridoxine_-B6-_Induced_Inhibition_of_Prolactin_Release_in_the_Female_Rat_-_1978
[Edited link out]
Pyridoxine_-B6-_Suppresses_the_Rise_in_Prolactin_and_Increases..._-_1982
[Edited link out]

Testosterone_levels_in_men_with_erectile_dysfunction_-_2006
[Edited link out]

The_Relationships_Between_Serum_Testosterone_and_Prolactin_Levels_and_NPT_in_Impotent_Men_-_1982
[Edited link out]

****************************
MORE STUDIES ON VITAMIN B-6
****************************

Pyridoxine (Vit. B 6 ) Decreases Opioids-lnduced Hyperproiactinemia, 1985
[Edited link out]

Effect of Pyridoxine on Pituitary Release of Growth Hormone and Prolactin in Childhood and Adolescence* - 1978
[Edited link out]

Suppression of thyrotropin (TSH) and prolactin (PRL) release by pyridoxine in chronic primary hypothyroidism. 1977
[Edited link out]

TREATMENT OF WOMEN WITH THE GALACTORRHEA-AMENORRHEA SYNDROME WITH PYRIDOXINE (VITAMIN B-6 ), 1976
[Edited link out]

EFFECT OF PYRIDOXINE ON HUMAN HYPOPHYSEAL TROPHIC HORMONE RELEASE: A POSSIBLE STIMULATION OF HYPOTHALAMIC DOPAMINERGIC PATHWAY. 1976
[Edited link out]

Pyridoxine Improves Drug-Induced Parkinsonism and Psychosis in a Schizophrenic Patient, 1990
[Edited link out]

Effects of pyridoxine hydrochloride (vitamin B6) on chlorpromazine-induced serum prolactin rise in male rats, 1979
[Edited link out]

Inhibition of L-Dopa-Induced Growth Hormone Stimulation by Pyridoxine and Chlorpromazine
[Edited link out]
****************************

Additional commentsabout B6:

[Edited link out]

******************

Since it's been established that Accutane causes depression by changing how the brain regulates Dopamine and Serotonin, I have a very, very important question:

- What kind of exam would confirm that I still have (after all these years) low dopamine? Since low libido and not feeling motivated (I think I am, however let's say I am wrong) are consequences of it?

I did a little more research and this was the only one I could find:

https://labtestsonline.org/tests/catecholamines

Is this what's necessary to confirm once and for all (despite high prolactin and all the others I already posted) what Accutane did?

One thing that I forgot to say is that the loss of libido actually benefit me. I am not by a long shot interested in returning to the old days when my libido was normal/high, so this side effect did not caused my any issues AT ALL. To return to the way I was would be like a healthy individual following a strict diet to start eating junk food.

I might also give many reasons for not wanting any relationship with women, or engaging in sex or masturbation, and may justify that having the libido of a "devoted priest" is not something that impairs one's life (I don't think I was cut out for this, just doesn't feel these three things are relevant). My life was never about any of those things. And I grew tired of them over the years.

But (and here's an important thing I failed to understand until now) the way I behave and think TODAY might be exactly a result of this side effect.

If we ask any psychopath if they are "normal" we will neverhear them admiting, because if their minds could create guilt they would not be what they are in the first place. That clearly tells one's opinion should be disregarded not because that person is biased by her life experiences, the way she sees and understand things.

It should not matter much because there are diseases that a) don't have any symptoms, or b- the person doesn't (or can't) feel sick, even though SHE IS.

How come? The decision to not eat "junk food" as I put it is something that can be justified and we may decide not to and follow a strict diet, yet we ARE ABLE TO DECIDE FOR OURSELVES.

The accutane treatment stole that choice from me. Did you all get my point? Perhaps (just perhaps) I was not meant to be what I am today, perhaps this "meddling" destroyed my sex life and as a result the fact I am not even complaining IS PRECISELY A CONFIRMATION OF THIS SIDE EFFECT.

In fact I completely forgot this treatment and was only informed about any of this when in 2017 I tested for testosterone (I think for the first time) after reading a suggestion to do it. This clearly demonstrates that I didn't remember Accutane or care about it AT ALL. I always thought what "went wrong" in 2012-13 (depression, libido increased shortly and then a sharp decline, and in the next years less interest).

The depression I had in 2012 was anything like I experienced before. I remember I cried for days/weeks at the time (and this was one year after the Accutane treatment ended) because all of sudden I was feeling REALLY BAD. It took me YEARS to overcome this side effect, just like that Superman III scene in the junkyard, that contain a metaphor and hallucination wherein Superman is actually alone in the junkyard, raising hell and causing damage, and fighting a Jekyll-Hyde war for control solely in his own mind.

I never used any other drug (not even to treat this depression) and was able to flush down the toilet that mental imbalance over time. During the treatment I followed all medical advices and didn't even visit the gym for fear of jeopardizing the treatment, spend time outside, etc. I didn't do anything wrong.

I'll see what else is left now... my biggest fear is that not having the old libido I can't feel motivated in my body and mind to do all the other stuff. For example, not have good memory or a little fatigue that not even older people have. Even if the libido doesn't improve I'll fix the rest and improve my health/lifestyle, doing the best I can.

It doesn't surprise me little is known about all these reported side effects, considering how many quacks are out there prescribing this drug. I would take with a grain of salt these reports (see the 2014 study) that some meds didn't help restoring the libido. We don't know what kinds of tests all these people did and if they had any other deficiency in their diets or any other undisclosed or unknown health problems.

In my case I'll check with the nutritionist Monday which supplements can help. Maybe the correct vitamin B-6, vitamin-E and a few more, perhaps the prolactin will decrease after some good changes in my life. Also vitamin D from the SUN to increase testosterone.

As someone once said, "nobody cares about our health but US". Keep digging for answers.

Quote
MemberMember
1804
(@truejustice)

Posted : 01/27/2018 5:13 pm

Thx Perene - I appreciate the detail in your posts!!

A question though - how do you know your issues dont stem from the gut??
Before someone says its both, the question is more, what steps do we take in order to fix all this head stuff i.e depression or low mood, yes work on both but can we all be clear theres an order of importance- no point being on antidepressants if gut health isnt good.

Im betting if you put 50 doctors in a room and ask them they would say absolutely it all starts with good gut health, even an endocrinologist would say this Im sure!!

So, how do we know if gut villi are srewed or if we have leaky gut syndrome?

You cant expect dopamine and testosterone or any other hormone to work properly if gut health is screwed yeah

So my point is theres surely an order in how you tackle things, how much attention have you given to improving gut health?

People considering say testosterone treatment, it would be rather pathetic if in the end all you had to do was fix up gut health wouldnt it??

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MemberMember
60
(@fiksi)

Posted : 01/27/2018 6:47 pm

Lots of problems linking to gut after this poison, but, as it affects almost anything, hard to knwo what to do... once accutane is done, you are on your own to search for solutions.

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MemberMember
0
(@abi72)

Posted : 01/27/2018 8:54 pm

On 1/28/2018 at 5:06 AM, Perene said:

@TrueJustice

Considering the MANY side effects from this poison I think it's a miracle that I only experienced dry lips during treatment, plus depression for at least 3 years (now there's not a single shred of this, it's completely gone) after it ended, and the loss of libido that for all these years I suspected was only due to my views on women/sex/masturbation/society/etc - psychological reasons. I only found out this forum and all these stories months ago. That's when I started to take a series of blood tests.

Someone mentioned a few other symptoms that affect the eyes in this post:
https://www.medhelp.org/posts/Eye-Care/Help-i-am-concerned-about-my-skin-medication/show/1569321

I found a few studies and articles and will share them here, perhaps some will be useful:

Short-term isotretinoin treatment decreases insulin-like growth factor-1 and insulin-like growth factor binding protein-3 levels: does isotretinoin affect growth hormone physiology? (2010)
[Edited link out]

Persistent_Corneal_Opacity_After_Oral_Isotretinoin_Therapy_for_Acne_-_2000
[Edited link out]

Accutane Defense Win: Court overturns $1 million verdict for lack of evidence (interesting reading, take a look what was the excuse given)
[Edited link out]

Isotretinoin_and_psychopathology_-_a_review_-_2009
[Edited link out]

Isotretinoin_associated_with_craving_for_cigarettes_-_2000
[Edited link out]

(another confirmation that by affecting dopamine isotretinoin causes depression and as a consequence this loss of libido)

Isotretinoin treatment for acne vulgaris and its cutaneous and ocular side-effects - 1999
[Edited link out]

The_association_between_depression_and_isotretinoin_use_in_acne_-_2003
[Edited link out]

The_psychological_and_emotional_impact_of_acne_and_the_effect_of_treatment_with_isotretinoin_-_1999
[Edited link out]

*********
About testosterone, prolactin, vitamin B-6...
*********

Effect_of_Intravenous_Pyridoxine_on_Plasma_Prolactin_in_Hyperprolactinemic_Subjects_-_1978
[Edited link out]

Gambling_-_increased_libido_-_class_effects_of_dopamine_agonists_-_2006
[Edited link out]

Inhibition_of_prolactin_by_pyridoxine_-_1979
[Edited link out]

Is_the_measurement_of_ST_routinely_indicated_in_men_with_ED_-_1999
[Edited link out]

Is_there_any_relation_between_serum_levels_of_TT_and_the_severity_of_ED_-_2002
[Edited link out]

Lack_of_Acute_Effects_of_Pyridoxine_on_Prolactin_Secretion..._-_1978
[Edited link out]

Lack_of_sexual_activity_from_ED_is_associated_with_a_reversible_reduction_in_ST_-_1999
[Edited link out]

Phthalates_might_interfere_with_testicular_function_by_reducing..._-_2015
[Edited link out]

(this oneraises attention to one thing that can lower testosterone levels. About phthalates I suggest reading these sources:)

* Dioxins_and_Health_-_Arnold_Schecter_-_2012
* The_Dirty_Dozen_-_Toxic_Chemicals_and_the_Earths_Future_-_2003
* Toxicants_in_Food_Packaging_and_Household_Plastics_-_Suzanne_M._Snedeker_-_2014
* Not_Just_a_Pretty_Face_-_The_Ugly_Side_of_the_Beauty_Industry_-_2007
* Slow_Death_by_Rubber_Duck_-_How_the_Toxic_Chemistry_of_Everyday..._-_2009
* Toxic_Beauty_-_How_Cosmetics..._-_Samuel_S._Epstein_-_2009
* What's_Gotten_Into_Us_-_Staying_Healthy_in_a_Toxic_World_-_2011
* Toxin_Toxout_-_Getting_Harmful_Chemicals_Out_of_Our_Bodies..._-_2013
* Is_It_Safe_-_BPA_and_the_Struggle_to_Define_the_Safety_of_Chemicals_-_2013
* Estrogeneration_-_How_Estrogenics_Are_Making_You..._-_Anthony_G._Jay_-_2017

Among others.

Pyridoxine_-B6-_Induced_Inhibition_of_Prolactin_Release_in_the_Female_Rat_-_1978
[Edited link out]

Pyridoxine_-B6-_Suppresses_the_Rise_in_Prolactin_and_Increases..._-_1982
[Edited link out]

Testosterone_levels_in_men_with_erectile_dysfunction_-_2006
[Edited link out]

The_Relationships_Between_Serum_Testosterone_and_Prolactin_Levels_and_NPT_in_Impotent_Men_-_1982
[Edited link out]

****************************
MORE STUDIES ON VITAMIN B-6
****************************

Pyridoxine (Vit. B 6 ) Decreases Opioids-lnduced Hyperproiactinemia, 1985
[Edited link out]

Effect of Pyridoxine on Pituitary Release of Growth Hormone and Prolactin in Childhood and Adolescence* - 1978
[Edited link out]

Suppression of thyrotropin (TSH) and prolactin (PRL) release by pyridoxine in chronic primary hypothyroidism. 1977
[Edited link out]

TREATMENT OF WOMEN WITH THE GALACTORRHEA-AMENORRHEA SYNDROME WITH PYRIDOXINE (VITAMIN B-6 ), 1976
[Edited link out]

EFFECT OF PYRIDOXINE ON HUMAN HYPOPHYSEAL TROPHIC HORMONE RELEASE: A POSSIBLE STIMULATION OF HYPOTHALAMIC DOPAMINERGIC PATHWAY. 1976
[Edited link out]

Pyridoxine Improves Drug-Induced Parkinsonism and Psychosis in a Schizophrenic Patient, 1990
[Edited link out]

Effects of pyridoxine hydrochloride (vitamin B6) on chlorpromazine-induced serum prolactin rise in male rats, 1979
[Edited link out]

Inhibition of L-Dopa-Induced Growth Hormone Stimulation by Pyridoxine and Chlorpromazine
[Edited link out]

****************************

Additional commentsabout B6:

[Edited link out]

******************

Since it's been established that Accutane causes depression by changing how the brain regulates Dopamine and Serotonin, I have a very, very important question:

- What kind of exam would confirm that I still have (after all these years) low dopamine? Since low libido and not feeling motivated (I think I am, however let's say I am wrong) are consequences of it?

I did a little more research and this was the only one I could find:

https://labtestsonline.org/tests/catecholamines

Is this what's necessary to confirm once and for all (despite high prolactin and all the others I already posted) what Accutane did?

One thing that I forgot to say is that the loss of libido actually benefit me. I am not by a long shot interested in returning to the old days when my libido was normal/high, so this side effect did not caused my any issues AT ALL. To return to the way I was would be like a healthy individual following a strict diet to start eating junk food.

I might also give many reasons for not wanting any relationship with women, or engaging in sex or masturbation, and may justify that having the libido of a "devoted priest" is not something that impairs one's life (I don't think I was cut out for this, just doesn't feel these three things are relevant). My life was never about any of those things. And I grew tired of them over the years.

But (and here's an important thing I failed to understand until now) the way I behave and think TODAY might be exactly a result of this side effect.

If we ask any psychopath if they are "normal" we will neverhear them admiting, because if their minds could create guilt they would not be what they are in the first place. That clearly tells one's opinion should be disregarded not because that person is biased by her life experiences, the way she sees and understand things.

It should not matter much because there are diseases that a) don't have any symptoms, or b- the person doesn't (or can't) feel sick, even though SHE IS.

How come? The decision to not eat "junk food" as I put it is something that can be justified and we may decide not to and follow a strict diet, yet we ARE ABLE TO DECIDE FOR OURSELVES.

The accutane treatment stole that choice from me. Did you all get my point? Perhaps (just perhaps) I was not meant to be what I am today, perhaps this "meddling" destroyed my sex life and as a result the fact I am not even complaining IS PRECISELY A CONFIRMATION OF THIS SIDE EFFECT.

In fact I completely forgot this treatment and was only informed about any of this when in 2017 I tested for testosterone (I think for the first time) after reading a suggestion to do it. This clearly demonstrates that I didn't remember Accutane or care about it AT ALL. I always thought what "went wrong" in 2012-13 (depression, libido increased shortly and then a sharp decline, and in the next years less interest).

The depression I had in 2012 was anything like I experienced before. I remember I cried for days/weeks at the time (and this was one year after the Accutane treatment ended) because all of sudden I was feeling REALLY BAD. It took me YEARS to overcome this side effect, just like that Superman III scene in the junkyard, that contain a metaphor and hallucination wherein Superman is actually alone in the junkyard, raising hell and causing damage, and fighting a Jekyll-Hyde war for control solely in his own mind.

I never used any other drug (not even to treat this depression) and was able to flush down the toilet that mental imbalance over time. During the treatment I followed all medical advices and didn't even visit the gym for fear of jeopardizing the treatment, spend time outside, etc. I didn't do anything wrong.

I'll see what else is left now... my biggest fear is that not having the old libido I can't feel motivated in my body and mind to do all the other stuff. For example, not have good memory or a little fatigue that not even older people have. Even if the libido doesn't improve I'll fix the rest and improve my health/lifestyle, doing the best I can.

It doesn't surprise me little is known about all these reported side effects, considering how many quacks are out there prescribing this drug. I would take with a grain of salt these reports (see the 2014 study) that some meds didn't help restoring the libido. We don't know what kinds of tests all these people did and if they had any other deficiency in their diets or any other undisclosed or unknown health problems.

In my case I'll check with the nutritionist Monday which supplements can help. Maybe the correct vitamin B-6, vitamin-E and a few more, perhaps the prolactin will decrease after some good changes in my life. Also vitamin D from the SUN to increase testosterone.

As someone once said, "nobody cares about our health but US". Keep digging for answers.

I thought you would be aware that having low libido goes hand in hand with having little drive and motivation.
If you have zero libido - you won't want sex and you won't care about it.
I heard guys say on here and other forums that they have no interest in sex at all but most of them (not all) want to want to have sex.
It is a clear sign that serotonin and dopamine has been compromised by accutane but so has a lot of other things.
The first place to start is gut health. Go on youtube and follow what they say.
I suggest you start with a fast - whatever you can manage and then juice, probiotics etc.
Did you see the video i Posted William Walsh - he has recommendations for brain health.

Have you tested for low zinc?
Magnesium, copper, folate?
All the B's
Vit C, E, and beta carotene
Get an amylase test done.
Have you had a heavy metals test done?
KPU Test
If you really are up for getting more tests we can work on this to make sure you cover everything

@ trujustice - have you ever taken antibiotics?

A systematic approach is needed and time.
We all know by now that there is no overnight cure here.
Going on a healthy diet for a few weeks won't change anything.
Only the strongest of the strong will adapt and do all that is needed - a big ask when you already have so much to deal with but it cam be done!

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MemberMember
23
(@perene)

Posted : 01/27/2018 10:00 pm

My zinc levels are normal. I don't think I have any of the low testosterone symptoms, or little drive/motivation (the latter is something I never had).

But (and this I explained in the other forum) I am 99% sure I have at least these SPD traits:
https://en.wikipedia.org/wiki/Schizoid_personality_disorder

=Consistent preference for solitary activities.
= Very few, if any, close friends or personal relationship, and a lack of desire for such.

I have always been like this towards everyone, especially women. The fact that I had a healthy sex life doesn't change this.

And this is why I hate talking about myself, because everyone always think what happened with me can be solved by a psychologist. Everyone that complains about low libido, ED and anything related (as a result from the Accutane treatment) is always told this is anything but a permanent side effect from the drug.

https://rxisk.org/accutane-30-years-of-trading-our-sex-lives-for-clear-skin/

**********
The authors cited several cases where erectile dysfunction occurred independently of depression during retinoid therapy and suggested that erectile dysfunction may be a side effect of the entire retinoid class of drugs, to which isotretinoin belongs. Importantly, the authors also commented on the general unwillingness of patients to report erectile dysfunction.
*******

Regardless ifI can give good reasons for not wanting to restore my libido or to go back to how things were, this doesn't change the factAccutane got rid of my sex life. This was not my doing.

Saying that one can only seek treatment against a side effect if that person feels affected it's a mistake from your part.

Every person is not the same, and it's known (at least by psychiatrists) that people who suffer from personality disorders/some sort of mental illness never think there's something wrong with them.

I may think this side effect from Accutane was a godsend. Still it's something that should be corrected, because low testosterone can impair one's life in other ways (and mine was REALLY LOW - 309 ng/dL), and I may find out that having a libido can be good, even after all that I've been through and despite what I want today.

Again: Accutane stole that choice from me.

The criteria to determine if someone is "normal" is based on how much the behaviour impairs his own life in relation to others, it has to do with HOW MANY PEOPLE HAVE THESE TRAITS.

If the majority of people were like schizoids, avoidants, etc. then they would be called "normals".

And the fact that not many people report these side effects it doesn't matter AT ALL. Even if no more than a dozen were affected it was criminal what Roche did, not informing for DECADES in the leaflet, after all the warnings.

Whatever the drug does to cure acne for good also affects our entire body in the same way.

In other words it's like common drugs were you hiring someone to paint your walls, and Accutane was on the other hand planting explosives to replace the entire building with something similar, but far from being the same. Of course (after all the destruction) the new YOU might appear on the surface to be the same, yetit WILL NEVER BE.

It is implied that reversing these changes is an impossibility. The reasons given were:

**
A medical hypothesis published in 2009 proposed that long-term side effects associated with isotretinoin, including erectile dysfunction, may be the end result of persistent modifications to mechanisms which control gene expression. If true, this would indeed explain the enduring nature of sexual symptoms which emerged during isotretinoin treatment.
*******
Csoka AB, Szyf M. Epigenetic side-effects of common pharmaceuticals: a potential new field in medicine and pharmacology:
[Edited link out](link for the full article)

About what can be done to improve these conditions, or what sorts of tests are still left, I am seeing there's too many and I hardly feelthe same excitement from doctors to try all of them (where's Dr. House when we need him?).

What I said before is to concentrate all focus in the high prolactin. A man with high prolactin levels has ED and low libido. There's no excuse now to not get tested for this, since we are always told our testosterone levels aren't low enough to justify HRT. HRT has not helped (according to reports) with this problem, and I don't know if you noticed:

In August my prolactin was 25
In November, 25 again
In January increased to 28

(A man should have less than 10, never 25-28)

While my total/free testosterone changed in all these tests. TT increased from 309 to 419 after supplementing with vitamin D, and then decreased to 357 after I took 1 (instead of 2) pills (7000 UI/week). Another proof that unless prolactin levels decrease sharply (with vitamin B-6, Cabergoline or anything similar) things will remain the same. It's like the prolactin were the government taxes, and testosterone the "cash" invested.

It won't matter to put a lot of money in a company(more testosterone) if Big Brother takes half of it. In other words as long as prolactin is still high these efforts will be in vain.

And my guess is that additional blood tests won't reveal anything abnormal . I'll keep trying to do new ones.

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MemberMember
15
(@frage)

Posted : 01/28/2018 12:31 am

@Perene
"But (and here's an important thing I failed to understand until now) the way I behave and think TODAY might be exactly a result of this side effect."

I agree that this could be the case, even likely to be the case. Although, don't let that get to you to much. It is what it is. Psycology 101 makes the assumption that the mind can control the body, but it has been my observation through this post accutane stuff that the body does alot of controlling of the mind. That may sound a little vague but hopefully the idea makes it across.

"The accutane treatment stole that choice from me. Did you all get my point? Perhaps (just perhaps) I was not meant to be what I am today, perhaps this "meddling" destroyed my sex life and as a result the fact I am not even complaining IS PRECISELY A CONFIRMATION OF THIS SIDE EFFECT."

Yeah, unfortunatley it may be the case that your lack of interest in sex and women, and even your stance on the issue, stems largley from accutane usage. Crazy right?

"I never used any other drug (not even to treat this depression) and was able to flush down the toilet that mental imbalance over time. During the treatment I followed all medical advices and didn't even visit the gym for fear of jeopardizing the treatment, spend time outside, etc. I didn't do anything wrong."

So are you saying this depression went away on its own after a year? What is this "treatment I followed all medical advices"?

"Since it's been established that Accutane causes depression by changing how the brain regulates Dopamine and Serotonin, I have a very, very important question"

Don't forget that accutane, if it causes the same syndrome as finasteride, also effects allopregnanolone levels.

Heres a study done recently on pfs patients that found a bunch of altered neuroactive steroid levels that you might find interesting:
http://sindromepostfinasteride.forumfree.it/?act=Attach&type=post&id=607265999
Pubmed abstract: https://www.ncbi.nlm.nih.gov/pubmed/28408350

I found these threads by the user bloom on the raypeat forum interesting:
https://raypeatforum.com/community/threads/post-finasteride-sydnrome-and-the-5ar1-and-2-isoenzymes.19166/#post-266796

Can't come to think otherwise that all these drugs that cause these symptoms being 5aris is not a coincidence.

Just learned that progesterone has been one of the more successful treatments over on propeciahelp. Progesterone being rather closely tied to the 5ari enzyme.

Yet alot of people have known these things for decades, tried treatments that have supposedly cured or helped others and had no success for them. Can't wait for that Baylor study to come out.

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Dubya_B, Dubya_B and Dubya_B reacted
MemberMember
23
(@perene)

Posted : 01/28/2018 10:38 am

*******
I agree that this could be the case, even likely to be the case. Although, don't let that get to you to much. It is what it is. Psycology 101 makes the assumption that the mind can control the body, but it has been my observation through this post accutane stuff that the body does alot of controlling of the mind. That may sound a little vague but hopefully the idea makes it across.
****
There are tons of things we do in our daily lives (not just taking for months a powerful drug like Accutane) that can do all sorts of changes in our body, and we are not qualified to judge if we are OK or not. I know this may sound to some people BIZARRE, because they think they know themselves more than anyone else, and the idea of not being able to say if what we feel or even want is adequate sounds terrifying, but that's not HOW OUR BODY WORKS.

It can trick us into think we are healthy, and our brains are not impervious. That's why I mentioned psychopaths not being able to say they are wrong, if they thought they are not normal they would not be psychopaths in the first place.

I may rationalize that having a libido, pursuing women, etc. is no good, and may even be 100% right. Wouldn't matter, the blood tests still prove that I have a condition that prevents me from having these desires IF I WANTED. That automatically prevents me from presenting these arguments that I am better this way, and may sound like a sick person trying to praise his own sickness, as in a very fat person trying to imply that being unhealthy this way is better.

All these years I never asked for a testosterone blood test and thought everything was OK since the usual tests didn't show anything wrong.

When I did all these additional tests I discovered the truth and noticed things were worse than I imagined.

There are lots of diseases that are asymptomatic. For example, glaucoma:
https://en.wikipedia.org/wiki/Glaucoma

Can only be treated, there is no cure for it. And you CAN'T know if you have it unless the side effects give you a hint.

Or if you do all the necessary tests. After I saw a TV interview I did that (of course I had to LIE about it, otherwise the doctors wouldn't authorize the tests), even though I never had any symptoms. The results were negative,the tests were exhaustive, one of them force me to spend the entire day in the clinic, applying eye drops. I will not do them again unless there's some sign of something wrong.

Not only Accutane did all those things to me, my lifestyle influenced a lot on these results, or the chemicals we are exposed on a daily basis. There's a lot of discussion about BPA and phthalates:
https://www.anabolicmen.com/antiandrogens/

In this link it's explained (see studies there) that all these chemicals play a role, too. Some people argue the effects aren't that bad, yet they never think about the cumulative effect, these things add up. Most will say "we are going to die anyway, so why bother". I do care about all this. A LOT.

That's why I am ditching all the plastics I can (even though we can't get rid of them, go to a supermarket and see for yourself what I mean) and replacing my personal care products for natural/organic versions. Again: nobody cares about our health but US. Don't expect these quacks to order all these many blood tests to investigate what can be done to fix these Accutane side effects or give any good advice.If they don't order them in my health plan (in it they are ALL free) I may even go to a lab and pay for each.

We are on our own. These doctors can never be trusted because they (just like these big companies like ROCHE) profit from all of us being sick. Like politicians profit from the chaos they help to create, and use voters only to get what they want. And if you don't believe you are sick and make SURE there's nothing wrong with you then you are always going to be stuck in the same condition.

No, no, no. Accutane played a MAJOR ROLE (if not 100, at least more than 50%) in my sexual dysfunction. Prior to the 2011 treatment that took months I had another sex life. I was able to masturbate a few times a day when feeling horny. My orgasms were pleasurable. My penis wouldn't be red after I tried once or twice after SEVERAL DAYS without it (not sure if this is due to the personal care products used, or Accutane's fault, as in drying the skin).

Nowadays I don't have any sexual desire, so I spend weeks without any need to do it.I don't think even monks who don't see the light of day have the same libido. I spent more than a year (!) between 2016-17 without masturbation. In 2012-13 while I was depressed I started feeling uneasy with this idea and spent months without it. You can't argue someone may start behaving like that after 2 decades of a healthy libido for any other reason besides taking this drug.

Anyone that argues Accutane cannot be linked to depression and sexual dysfunction issomehow profiting from spreading these lies.


So are you saying this depression went away on its own after a year? What is this "treatment I followed all medical advices"?
***

I felt depressed for at least 2-3 years after the treatment ended, and right now I don't think there's any of this nasty side effect left. It could be argued that my dopamine is still low(or not in ideal levels) and I tend to procrastinate things or not feel excited as I should be due to the Accutane treatment. For example, my behavior was always like the Spock from Star Trek, calm and collected, yet I remember that before this treatment I was more UNEASY in social events, or small things made me feel more excited. A psychologist would say that I am bland and dull in my life, probably due to these SPD traits that I always had, or as a consequence of this treatment.

What I am trying to say is that the depression may be gone, yet the dopamine needs to be corrected (to lower the prolactin) and as a consequence life will become more exciting for me.

If there's a test to measure dopamine levels I need to do it.

Following all medical advices = not doing anything that could jeopardize the treatment.

For example:

- I said I didn't spend time outside. It is known you can't be exposed to the Sun while taking the drug, and if you need to, got to use sunscreen protector. I always spent time at home(for many years before the treatment).This didn't change while I took the drug.

- I was planning to go to a gym for the 1st time, and delayed that decision due to concerns this would affect the results. Some users report their bodies ached and their energy levels dropped consideraby while on the drug. Even though I was told I shouldn't train hard, I didn't do any exercise.

- Then there's drinking alcohol, using certain meds, etc.

Why I am saying everything was followed to the letter? Why I am saying that my life practically stopped during all these months, and I had the utmost concern for any side effect caused by any wrong decision?

Precisely to dismiss any claim that during the period while I took the drug I did ANYTHING UNWISE, then it is my fault things evolved the way they did.

You may all bet this would be the first excuse, someone would point fingers at me and say "there, you see, you didn't do this or that, that's why these side effects happened, you were negligent".

No.

JUST NO.

I bet no one here took the same precautions I did, plus had the same health. Another excuse will be "you had a prior condition, that's why you are sick today, it's not because of Accutane you are in your current state".

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MemberMember
0
(@abi72)

Posted : 01/28/2018 2:09 pm

http://www.blogtalkradio.com/pfsglobal/2015/09/21/ep-33-the-dangers-of-saw-palmetto-with-my-guest-james

Also reminder that this guy suffered fro PAS

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MemberMember
23
(@perene)

Posted : 01/28/2018 5:03 pm

I discovered some relevant evidence, for those who saw all the blood tests and additional exams I posted here, and have been following my profile:

[Edited link out]

This is the proof I did this treatment, and how it worked during 2011. In one of the papers the visits to dermatologists are listed (CISAM = the name of the clinic), in March 31, May 17, June 9 and August 31.

I didn't have to pay for anything (not even the drug). In the other paper you can see the dates in which isotretinoin was sent to me by the pharmacy. The paper says I registered at May 2, and the treatment was prescribed by the doctor for 8.5 months. The acne I had was in the back, it was not severe by a long shot, still nothing else was working. I am sure if I had waited and changed my lifestyle the acne would be gone in a matter of years.

- In May 2 I received a package with 60 pills, and was said to take 2 each day. The dose was 20 mg. Then there's the first day of the months June, July, August and September, October 3 and November/December 1st.

If I remember correctly I started going to the gym at least 3 months after the treatment ended. Blood tests were done in May 1st, July 5 and October 3, as a requirement to continue prescribing this drug.

That's it, I am posting all of this here in case this information is useful.

Quote
MemberMember
60
(@fiksi)

Posted : 01/28/2018 5:15 pm

On 1/29/2018 at 6:03 AM, Perene said:

I discovered some relevant evidence, for those who saw all the blood tests and additional exams I posted here, and have been following my profile:

[Edited link out]

This is the proof I did this treatment, and how it worked during 2011. In one of the papers the visits to dermatologists are listed (CISAM = the name of the clinic), in March 31, May 17, June 9 and August 31.

I didn't have to pay for anything (not even the drug). In the other paper you can see the dates in which isotretinoin was sent to me by the pharmacy. The paper says I registered at May 2, and the treatment was prescribed by the doctor for 8.5 months. The acne I had was in the back, it was not severe by a long shot, still nothing else was working. I am sure if I had waited and changed my lifestyle the acne would be gone in a matter of years.

- In May 2 I received a package with 60 pills, and was said to take 2 each day. The dose was 20 mg. Then there's the first day of the months June, July, August and September, October 3 and November/December 1st.

If I remember correctly I started going to the gym at least 3 months after the treatment ended. Blood tests were done in May 1st, July 5 and October 3, as a requirement to continue prescribing this drug.

That's it, I am posting all of this here in case this information is useful.

My muscles are crippled from this drug man(improving though). I took 40mg, still not a high dose.

First mistake- why do they give this if acne is not severe?

Quote
MemberMember
0
(@abi72)

Posted : 01/28/2018 5:32 pm

Not saying anyone has pyroluria but it shows that like lyme disease, autism CFS - you have to address many issues. All starting with diet so
that when you do start a protocol you are already well on your way.
Is anyone in a position to get tested?
I suspect that many of you may be flushing away essential minerals, nutrients etc so it would be a worthwhile test.

Pyrolutia deficiencies:
Zinc, glutathione, biotin, magnesium, manganese deficient
and other compounds.
It's a simple urine test!

High copper

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1804
(@truejustice)

Posted : 01/28/2018 6:03 pm

Ahh the copper thing again, remember a couple of years ago on forum we ran around in circles, some saying youve got to increase copper and there were about 3 or 4 different tests, others said to lower it....

I had the hair mineral test which indicated high copper, havent checked with another hair test to see what its like now, that test was like 8 years ago now.

Zinc and manganese supposedly bring it down but as we all know after tane, we dont necessarily respond to these things do we!!

Anyone else got any copper info to share??

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0
(@abi72)

Posted : 01/29/2018 5:55 am

11 hours ago, TrueJustice said:

Ahh the copper thing again, remember a couple of years ago on forum we ran around in circles, some saying youve got to increase copper and there were about 3 or 4 different tests, others said to lower it....

I had the hair mineral test which indicated high copper, havent checked with another hair test to see what its like now, that test was like 8 years ago now.

Zinc and manganese supposedly bring it down but as we all know after tane, we dont necessarily respond to these things do we!!

Anyone else got any copper info to share??

There is no easy fix for high copper and and I don't think we are ever going to get a definitive profile that fits all accutane victims but finding anything in common will be a step forward.

If you google PFS/zinc you will find that many report feeling much better but the key as always is to test.

We need consistent testing from everyone.
This is what I would expect from researchers investigating looking for a PAS cure but we don't have that at the moment so
getting tested and posting results here is helpful.

I really wish that we could see what tests are being carried out by PFS researchers.
Do you think they look at heavy metals and mineral deficiencies etc - I think not.

I know they have looked at endocrine and central nerve damage etc but we need EVERYTHING looked at and tested.
We have to be pro active ourselves.
Harping on again - getting regulators to acknowledge the damage that has been done will ultimately help us in getting researches involved.

I ask you all to report your sides.

Is anyone going to get KPU test done?

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0
(@jens22)

Posted : 01/29/2018 8:57 am

Guys i think youre maybe overthinking it.
To my person: 23 years took accutane for about 1,5 years 20mg PER WEEK sometimes 40mgs per week!!
I stopped accutane 9 months ago. No erections in the morning no erections having sex or masturbating.
Just had 2 weeks in those 9 months since stopping it where everything worked fine, started with morning erection and followed by a lots of masturbating the following days.
And as fast as it has come it has gone... the next day...
havent had it now for about 3 months so wondering if it comes back...

My opinion is: Its just some problem with some hormone receptors or something and once they things luckily work right in our body for some days everything can be normal. i dont think there is something completeley destroyed by accutane... just blocked.

The first months i stopped accutane it felt liked i have no connection between head and dick but thats bullshit its still there... just some hormones must be right. by reading those forums everything gets worse...and if u contact roche or whatever brand this product makes it will not make your personal own problems better.

So lets stop typing that much and try to find some easy solution to the problem. cause i am sure there is
and it might come back overnight like it did 2 times for me.

i ve tried a lot of nutritional shit and nothing really worked... no doctor could help me so far as they just not listening or interested in the reason they all tried to give me some viagra and i tried it and it didnt work. also the skat test didnt work...

Is there anybody out there who solved his problem ? there are a lot of guys who recovered i am sure. just let me know how. and dont overthink the problem or make it too complicated. i read a lot in this thread here and it made me feel worse.

my skin doctor back then didnt tell me about this possibility and he said there will hardly be any side effects with 40 mgs per week. i think i took about 50mg/kg bodyweight.. so i weigh about 80kgs (think 175 pounds or so) and took about 3500mg isotretinoin.
Other side effects i have but i dont really mind.. sometimes bit nervous, a lot more sweating.. bit of dry lips but nothing severe!

If somebody knows about someone who solved is problem, who recovered let me know and let me know how!

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60
(@fiksi)

Posted : 01/29/2018 9:04 am

5 minutes ago, Jens22 said:

Guys i think youre maybe overthinking it.
To my person: 23 years took accutane for about 1,5 years 20mg PER WEEK sometimes 40mgs per week!!
I stopped accutane 9 months ago. No erections in the morning no erections having sex or masturbating.
Just had 2 weeks in those 9 months since stopping it where everything worked fine, started with morning erection and followed by a lots of masturbating the following days.
And as fast as it has come it has gone... the next day...
havent had it now for about 3 months so wondering if it comes back...

My opinion is: Its just some problem with some hormone receptors or something and once they things luckily work right in our body for some days everything can be normal. i dont think there is something completeley destroyed by accutane... just blocked.

The first months i stopped accutane it felt liked i have no connection between head and dick but thats bullshit its still there... just some hormones must be right. by reading those forums everything gets worse...and if u contact roche or whatever brand this product makes it will not make your personal own problems better.

So lets stop typing that much and try to find some easy solution to the problem. cause i am sure there is
and it might come back overnight like it did 2 times for me.

i ve tried a lot of nutritional shit and nothing really worked... no doctor could help me so far as they just not listening or interested in the reason they all tried to give me some viagra and i tried it and it didnt work. also the skat test didnt work...

Is there anybody out there who solved his problem ? there are a lot of guys who recovered i am sure. just let me know how. and dont overthink the problem or make it too complicated. i read a lot in this thread here and it made me feel worse.

my skin doctor back then didnt tell me about this possibility and he said there will hardly be any side effects with 40 mgs per week. i think i took about 50mg/kg bodyweight.. so i weigh about 80kgs (think 175 pounds or so) and took about 3500mg isotretinoin.
Other side effects i have but i dont really mind.. sometimes bit nervous, a lot more sweating.. bit of dry lips but nothing severe!

If somebody knows about someone who solved is problem, who recovered let me know and let me know how!

Sadly, these effects may be irreversible.... accutane does alter hormones, glands, but also receptors, and possibly immune system.

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0
(@jens22)

Posted : 01/29/2018 9:50 am

they are not as i said i had 2 weeks were everything was normal. and if there is a medicament like accutane that causes these things there must be a medicament that reverses them.

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60
(@fiksi)

Posted : 01/29/2018 10:07 am

13 minutes ago, Jens22 said:

they are not as i said i had 2 weeks were everything was normal. and if there is a medicament like accutane that causes these things there must be a medicament that reverses them.

Erection is complex, many systems are in the game... many are permanently impotent, some are impotent at times, some just have it weaker.

For instance, meibiomian gland can be completely destroyed by accutane- the damage can't be reversed. It is now widely known some effects are not reversible.

Some issues may be fixable, but depends on the exact system failing. So you need to do tests.

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