2 hours ago, hatetane said:

Thank you for this. How do we get everyone to report their sides?
Is it sheer laziness or something else?
All I know is that by not reporting it we are letting the pharms win.

When a review of roaccutane was done in 2015 (UK) it seems not enough proof to warrant change.
So yet again, not enough people reporting sides led to a decision for the claims by a few to be ignored.
Once again I say 'strength in numbers!"
Would any of you outside of the UK be willing to report you sides directly in the UK if that were possible?
If I get a good response from you guys I will see if I can make arrangements for this to be done.

I guess most of you have seen the propecia questionnaire that all their new members are asked to fill out.
How do you think that would work for us and if we used theirs as a template what would we need to add of delete from it?

1 hour ago, macleod said:

That's exactly what we need to come up with is a template. I personally would prefer a database of full journals and reports about dose, what happened, side effect list with descriptions, etc. Attach name, age on it and we send as many as those as we can. If we could get a group of representatives with everyone's signatures, strength in numbers...

What we need to do is create a patient registry. Nothing fancy at first, maybe a template that we can extract to an excel datasheet and use it to create visuals like graphs, etc. Later on, with funding, we could create a web based registry. I have experience working with patient registries as part of my job so that's an option. I thought of it last night.

What's this propecia questionnaire? I'd like to take a look at it.

Didnt you guys say that not masterbatimg for long enough will bring back your sex drive on ots own?

On Ž4Ž/Ž1Ž/Ž2017 at 6:18 PM, TrueJustice said:

Other than interacting with copper, do you think it's possible tane can somehow interact with amalgam fillings? i.e Mercury?

Mercury fillings have been known to be toxic whether you took Accutane or not! If you have them get them out

6 hours ago, MonsterDiesel said:

 

What we need to do is create a patient registry. Nothing fancy at first, maybe a template that we can extract to an excel datasheet and use it to create visuals like graphs, etc. Later on, with funding, we could create a web based registry. I have experience working with patient registries as part of my job so that's an option. I thought of it last night.

What's this propecia questionnaire? I'd like to take a look at it.

@MonsterDiesel Do you have the skills to create or copy a template like this?
We would need a separate thread. Would it just be a case of copy and paste for members - I have no idea.
http://www.propeciahelp.com/forum/viewtopic.php?f=3&t=1872

6 hours ago, MonsterDiesel said:

 

What we need to do is create a patient registry. Nothing fancy at first, maybe a template that we can extract to an excel datasheet and use it to create visuals like graphs, etc. Later on, with funding, we could create a web based registry. I have experience working with patient registries as part of my job so that's an option. I thought of it last night.

What's this propecia questionnaire? I'd like to take a look at it.

@MonsterDiesel Do you have the skills to create or copy a template like this?
We would need a separate thread. Would it just be a case of copy and paste for members - I have no idea.
http://www.propeciahelp.com/forum/viewtopic.php?f=3&t=1872

http://www.propeciahelp.com/forum/viewtopic.php?f=3&t=371

Can a group of you guys get together and suggest where we could go with something like this.

We could start a new thread - accutane history, side effects, how it impacts one's life.

This template needs some work - given that there are 150known side effects we may need to concentrate on the most common
sides but also give the opportunity to list 'others'

18 hours ago, tanedout said:

Are you taking pregnenolone in addition? Been reading some really good things about it in higher doses (50-150mg daily), someone here using it alongside TRT and getting some good benefits. Someone else on the same thread saying it's improved sensitivity

https://www.excelmale.com/showthread.php?7484-Pregnenolone-and-Libido

Pregnenolone: I've been using 25 mg for a few weeks now (no TRT). I was interested in using it because I have low cholesterol (which makes pregnenolone) and I know Dr. Crisler recommends it to PFS patients. In addition to potentially metabolizing into male or female hormones, it acts as a neurosteroid on its own. So far, I notice more oily skin, stronger orgasms, and stronger libido. No surprise. I'm more interested to see if my mental function improves over the next few months. I might experiment with increasing the dose, but taking it every day is already viewed as excessive from some people I've spoken to.

I don't think we have any simple neurotransmitter deficiency or simple switch that needs pressing. My problems did not manfiest over night. We have long-term damage that needs correcting (global apoptotic effects, lowered levels of neuroprotective substances, reduced hormones, etc.). I think we have to find a protocol that makes sense and stick to it for a long period of time. Pregnenolone supplementation fits into this puzzle well. It has the potential to exert some restorative effects that could benefit us in the long run. Another user has spoken extensively about TBI interventions, and I believe those should be implemented long-term as well.

That Vitamin study is referring to Vit A and C causing Fenton reactions(ROS creating) in the presence of excess Iron/Copper.
http://flipper.diff.org/apprulespathways/pathways/6861

If your issue is excess Copper or Iron:

L-Carnosine is supposedly a copper chelator.
http://autismcoach.com/carnosine-chelator-of-copper-heavy-metals-and-protectant-against-oxidative-stress/

There are also natural Iron chelators such as curcumin, quercetin, pine bark extract, EGCG, IP6, and more.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3821171/

Donating blood reduces Iron load. Zinc modulates copper levels.

On 2 avril 2017 at 1:18 AM, TrueJustice said:

Other than interacting with copper, do you think it's possible tane can somehow interact with amalgam fillings? i.e Mercury?

Interesting that you raise this question, my sides really kicked in when I have had an extensive dental work, about 2-3 years after tane.
Also mercury filling are rich in copper too.

3 hours ago, ACCUiTy_drANE said:

Pregnenolone: I've been using 25 mg for a few weeks now (no TRT). I was interested in using it because I have low cholesterol (which makes pregnenolone) and I know Dr. Crisler recommends it to PFS patients. In addition to potentially metabolizing into male or female hormones, it acts as a neurosteroid on its own. So far, I notice more oily skin, stronger orgasms, and stronger libido. No surprise. I'm more interested to see if my mental function improves over the next few months. I might experiment with increasing the dose, but taking it every day is already viewed as excessive from some people I've spoken to.

That's good to hear you've experienced some positive effects from it! The fact pregnenolone is made from cholesterol is also what caught my attention initially when reading into it, as my cholesterol was found to be extremely low when I had gastrointestinal testing done (probably down to issues with bile acid metabolism).

The second thing that really interested me is when @hatetaneposted a link to a study showing that THC in cannabis 'significantly increases pregnenolone synthesis in the brain'. Frompersonal experiences trying RSO and vaping weed I found when stoned I also noticed increased sensitivity, libido and orgasm (often to a significant degree).

Bearing in mind the only full recoveries on this thread (besides one from fin microdosing) are from using RSO. Maybe the weed induced increase in pregnenolone is the reason for this. I had assumed it was because weed is an AR5 inhibitor (which I understand preg,is, and the increased sythenesis of preg in the brain from the THC could account for this).

I've no idea how much dosage of preg as a supplement would be equivalent to a high dose of RSO, but I'd guess quite a lot over a fairly long period. Looking at the RSO recoveries;

- accutaneispoison - fully recovered over 3 months, taking about 50g+ in total. Improvements after 1 month
- taneabomination - fully recovered over 5 months taking a similar amount. Improvements noticed after 3 months
- otto - recovered sexual sides using RSO over I believe around 6 months

From what I've read it's important to get good quality pregnenolone otherwise it's ineffective, but I'm definitely going to give this a go at 150mg/daily or more (studies showing safe up to higher doses, 500mg/daily)

22 hours ago, tanedout said:

Are you taking pregnenolone in addition? Been reading some really good things about it in higher doses (50-150mg daily), someone here using it alongside TRT and getting some good benefits. Someone else on the same thread saying it's improved sensitivity

https://www.excelmale.com/showthread.php?7484-Pregnenolone-and-Libido

I've been taking really small doses (2-4mg daily) for a few weeks, can't say I've noticed it do anything. But I'll give 100mg/d a run for my money.

I stumbled across a pretty interesting article discussing how highlevels of testosterone can actually weaken the immune system. This is somewhat interesting because I haven't caught a cold since I came off Accutane. And I definitely should have because I take the train into school every day and it's infested with germs. I haven't had my testosterone levels checked outyet but I'm going this week and I truly think this could be a big discovery

Erectile Dysfunction Recognized as a Potential Side Effect of Accutane/Isotretinoin in Canada:

http://www.hc-sc.gc.ca/dhp-mps/medeff/reviews-examens/retinoid-eng.php

Quote

 

Conclusions and Actions

• Health Canadas review of the available information concluded that there may be a link between the use of oral isotretinoin products and the risk of impotence, but could not draw the same conclusion for the other drugs in the class.

• Health Canada recommended that the product information for all isotretinoin products be made consistent to include this risk by adding erectile dysfunction as a side effect in the product information for Accutane and Clarus, as it already appears in the product information for Epuris.

• Health Canada will continue to monitor safety information involving oral retinoid products, as it does for all health products on the Canadian market, to identify and assess potential harms. Health Canada will take appropriate and timely action if and when any new health risks are identified.

 

After being wholly ignored by the US FDA, Canada's pharmacovigilance agency takes a step to warn patients of ED / impotence as a side effect. Enlightening and disgusting at the same time.

Useful information for anyone fighting with their doctor about reporting, or at least recognizing, ED as a side effect of Accutane.

Bottom line: If it happened to you, report it!

.

Thanks Dubya - at last some official recognition.
I know you have been pushing everyone to report sides for ages now and I am baffled as to why hardly anyone does.
It's quick and easy and and won't just help others to be informed but it might help all of you guys as well.
We are years behind the PFS guys and the research that is now being undertaken for them.

Dubya, are you as frustrated as I am?

I am starting to bring a legal case and if anyone wants to contribute by giving their story by email and allowing me to share that
email it might eventually help us all. UK guys especially but I would appreciate all and any response.
PM me for email if you are interested.
Dubya I have your email already - is it all right if I share you story with my solicitor if need be?

All emails will be kept private and only shown to legal authorities with data protection in mind.

6 hours ago, tanedout said:

Bearing in mind the only full recoveries on this thread (besides one from fin microdosing) are from using RSO. Maybe the weed induced increase in pregnenolone is the reason for this. I had assumed it was because weed is an AR5 inhibitor (which I understand preg,is, and the increased sythenesis of preg in the brain from the THC could account for this).

That's a very interesting connection. In terms of pregnenolone being a 5-alpha reductase inhibitor, it's due to its potential conversion into progesterone, correct? If that's the case, it shouldn't be risky to supplement unless you overdid it. Progesterone is very important for the brain, and is being used to treat TBI patients. Also, correcting low estrogen can enhance libido and cognitive function in males. So long the dose is reasonable, pregnenolone should also convert to testosterone and DHT. My point being, pregnenolone isn't a direct 5ARI like Finasteride or Accutane. It's only giving the body what it needs. Correct me if I'm wrong. If I am, I will cease supplementation immediately because I don't want to play with fire, lol.

17 hours ago, hatetane said:

@MonsterDiesel Do you have the skills to create or copy a template like this?
We would need a separate thread. Would it just be a case of copy and paste for members - I have no idea.
http://www.propeciahelp.com/forum/viewtopic.php?f=3&t=1872

That template is good. I want to create something more extensive that looks at the side effects the makers said would only be temporary. It would be interesting to see what long term side effects we have in common. In addition, in order for this data to be credible, we need to have a control acne population that didn't take accutane. I want to put this online so we can immediately tabulate the data and make all kinds of nifty graphs and charts.

I will need everyone's help. We need to get a list of volunteer with very specific set of skills to help. People familiar with law, data analytics, medicine, researchers, graphic designers and just google and pubmed experience.

Retinoic Acid Restores Adult Hippocampal Neurogenesis and Reverses Spatial Memory Deficit in Vitamin A Deprived Rats

Emilie Bonnet,Katia Touyarot,Serge Alfos,Veronique Pallet,Paul Higueret,Djoher Nora Abrous

• Abstract

  A dysfunction of retinoid hippocampal signaling pathway has been involved in the appearance of affective and cognitive disorders. However, the underlying neurobiological mechanisms remain unknown. Hippocampal granule neurons are generated throughout life and are involved in emotion and memory. Here, we investigated the effects of vitamin A deficiency (VAD) on neurogenesis and memory and the ability of retinoic acid (RA) treatment to prevent VAD-induced impairments. Adult retinoid-deficient rats were generated by a vitamin A-free diet from weaning in order to allow a normal development. The effects of VAD and/or RA administration were examined on hippocampal neurogenesis, retinoid target genes such as neurotrophin receptors and spatial reference memory measured in the water maze. Long-term VAD decreased neurogenesis and led to memory deficits. More importantly, these effects were reversed by 4 weeks of RA treatment. These beneficial effects may be in part related to an up-regulation of retinoid-mediated molecular events, such as the expression of the neurotrophin receptor TrkA. We have demonstrated for the first time that the effect of vitamin A deficient diet on the level of hippoccampal neurogenesis is reversible and that RA treatment is important for the maintenance of the hippocampal plasticity and function.

12 minutes ago, guitarman01 said:

Retinoic Acid Restores Adult Hippocampal Neurogenesis and Reverses Spatial Memory Deficit in Vitamin A Deprived Rats

Emilie Bonnet,Katia Touyarot,Serge Alfos,Veronique Pallet,Paul Higueret,Djoher Nora Abrous

• Abstract

  A dysfunction of retinoid hippocampal signaling pathway has been involved in the appearance of affective and cognitive disorders. However, the underlying neurobiological mechanisms remain unknown. Hippocampal granule neurons are generated throughout life and are involved in emotion and memory. Here, we investigated the effects of vitamin A deficiency (VAD) on neurogenesis and memory and the ability of retinoic acid (RA) treatment to prevent VAD-induced impairments. Adult retinoid-deficient rats were generated by a vitamin A-free diet from weaning in order to allow a normal development. The effects of VAD and/or RA administration were examined on hippocampal neurogenesis, retinoid target genes such as neurotrophin receptors and spatial reference memory measured in the water maze. Long-term VAD decreased neurogenesis and led to memory deficits. More importantly, these effects were reversed by 4 weeks of RA treatment. These beneficial effects may be in part related to an up-regulation of retinoid-mediated molecular events, such as the expression of the neurotrophin receptor TrkA. We have demonstrated for the first time that the effect of vitamin A deficient diet on the level of hippoccampal neurogenesis is reversible and that RA treatment is important for the maintenance of the hippocampal plasticity and function.

???

4 hours ago, MonsterDiesel said:

That template is good. I want to create something more extensive that looks at the side effects the makers said would only be temporary. It would be interesting to see what long term side effects we have in common. In addition, in order for this data to be credible, we need to have a control acne population that didn't take accutane. I want to put this online so we can immediately tabulate the data and make all kinds of nifty graphs and charts.

I will need everyone's help. We need to get a list of volunteer with very specific set of skills to help. People familiar with law, data analytics, medicine, researchers, graphic designers and just google and pubmed experience.

This is all good news Monster. I am very willing, but I don't have any useful skills really. If there is anything you think I can do just let me know. I do hope everyone get on board with this because it will really push us forward.

6 hours ago, MonsterDiesel said:

That template is good. I want to create something more extensive that looks at the side effects the makers said would only be temporary. It would be interesting to see what long term side effects we have in common. In addition, in order for this data to be credible, we need to have a control acne population that didn't take accutane. I want to put this online so we can immediately tabulate the data and make all kinds of nifty graphs and charts.

I will need everyone's help. We need to get a list of volunteer with very specific set of skills to help. People familiar with law, data analytics, medicine, researchers, graphic designers and just google and pubmed experience.

Can we see some names here please! Does everyone realise that the point of this is to ultimately get recognition and research for our plight.
The fact that Health Canada Review is looking at accutane is huge. We got to do our bit.

On 4/3/2017 at 7:17 AM, oli girl said:

Mercury fillings have been known to be toxic whether you took Accutane or not! If you have them get them out

Hey oli girl - did you ever report your sides?

At the eye doctor right now for my yearly check up and whatta ya know? High blood pressure.....

Have always had perfect blood pressure my entire life...

5 hours ago, Colinboko said:

At the eye doctor right now for my yearly check up and whatta ya know? High blood pressure.....

Have always had perfect blood pressure my entire life...

I think I see the problem. Your going to the eye doctor to have your blood pressure checked. Kidding. Seriously though if you have problems with dry eyes, ask about a lactoferrin tear test next time.

Here are my detox pathway genes. just read up on sod2 mutations. Where are your iron serum levels sitting at? mine is on the high side
Iron, Serum 152 ug/dL 38 - 169
notice I have cyp2d6 s486t in common.
From what I read on this site, obviously your born with alot of your hereditary genes, but they are capable of mutating at any time.

DETOX

here is methylation

obviously it would have been great to have a before and after shot of all gene mutations before and after accutane. This would maybe be a good experiment with new patients going on accutane. No One has had access to anything like 23andme in the past before.
Short of this, im no geneticist but I wonder if we could trace back some of these changes to our parents and if they are not there, assume that accutane is what caused the change.

or its what we have in common genetically in how we were more affected.
you would first maybe look at minor tangible things like hair loss.

On second thought how do we know if any of these mutations mean anything? or are different from outside the general population? how do you cross check what this website is saying with looking at your own raw data? for instance how do they know my SOD2 mutation is a bad one?

it can only be a/a a/g or g/g. how do they know g/g is bad/mutated compared to a/a? what are they referencing?

how is a/a the normal and g/g the mutation?

2 hours ago, guitarman01 said:

8 hours ago, Colinboko said:

At the eye doctor right now for my yearly check up and whatta ya know? High blood pressure.....

Have always had perfect blood pressure my entire life...

I think I see the problem. Your going to the eye doctor to have your blood pressure checked. Kidding. Seriously though if you have problems with dry eyes, ask about a lactoferrin tear test next time.

Never said anything about dry eyes. If you actually read my post you'd see it was a yearly check up for contacts and they happen to take blood pressure during the exam, and it was high.

I think you and several others on this page need to fix your attitudes, and stop thinking your problems are the only ones that matter. I could comment on all of your genetic tests with snarky responses but I don't. So, save the attitude for someone else.