2012 Scientific Research Initiatives into the Post-Finasteride Syndrome

Hello all

I just wanted to let everyone know that I’m still alive but very busy. Additionally, I was also getting a little annoyed about all the theorizing and partial animosities going around on this forum. Both are linked (“belief wars”) and both are not helpful. Anyway, I just wanted to give you a quick update on what is going on in the background:

Research Project Status

Project working name: 1. AR expression in penile tissue
Objective: Determine if we have normal AR levels in penile tissue
Funding: secured
Status: Pilot is completed, project is being expanded with additional patients
Results: We found significant results (can’t detail because data is still unpublished)
Next steps: Recruit another 4 patients to increase sample size and statistical significance (in progress)
Publication: Q3/Q4 time frame
Remarks: We could use another 1-2 volunteers for completing the study. If you live in Europe, have penile insensitivity and are interested, please contact me via pm.

Project working name: 2. Full genome gene expression in penile tissue
Objective: Determine gene expression profile at a full genome level and identify potentially deregulated pathways
Funding: open
Status: Team is being finalized, protocol is in progress
Results: n/a
Next steps: Do pilot with biopsies from additional patients form project #1 (see above)
Publication: open
Remarks: If pilot yields significant data, we will launch full study as soon as we have funding

Project working name: 3. Genetics study
Objective: Find genetic markers which predict susceptibility for PFS
Funding: partially secured
Status: data analysis in progress
Results: first findings are available (can’t disclose due to publication status)
Next steps: complete analysis and write paper
Publication: open
Remarks: none

Project working name: 4. Effect of PFS on neurosteroids
Objective: Determine neurosteroid levels of affected patients
Funding: partially secured
Status: pilot in progress
Results: very significant findings (can’t disclose due to publication status)
Next steps: complete pilot and increase size of study
Publication: open
Remarks: We expect to complete pilot in June. If all goes well, we will expand study and this will require further patients. PM me if you live in Europe and are interested in participating.

Project working name: 5. Study of epigenetic effects involved in PFS
Objective: Understand mechanisms of persistency related to PFS with a focus on epigentics
Funding: open
Status: Study protocol design
Resuls: n/a
Next steps: finish protocol, secure funding and start patient recruitment (target: Q3)
Publication: target- approx. 12 months from study begin
Remarks: none

Project working name: 6. Proteomic study
Objective: Verify quantity and function of specific proteins encoded by androgen responsive genes (ARG’s)
Funding: open
Status: planning phase
Resuls: n/a
Next steps: determine team, secure funding and start protocol design
Publication: n/a
Remarks: none

As you can see, there is A LOT going on. Unfortunately scientific research doesn’t move as fast as we would all like. The fact that we are running this whole show with practically no funds up to now doesn’t make things easier either. Because of this, we are very much dependent on donation of time and good will of the involved scientists/people. This partially is also the reason why things are not moving along too fast.

Conclusions

Please respect that the involved people have full time jobs next to all of this, family and a life besides PFS and are doing the best with what is at their disposal. I am also sorry that I am not very responsive to pm’s lately. On top of everything, I have even taken over the project lead of one of the above research projects, and I really have to focus my time. All I can say is that things are moving in the right direction at an accelerating pace. The results we have gotten so far are confirming that we are moving in the right direction and that we are looking at the right things. For this reason, we will continue down this track.

I am pretty sure that we will know a lot more than we do now by this time next year (and even before). Please understand though, that until we have a clearer picture of what is going on at the molecular level, there is no point in asking me about therapeutic approaches, because any answer would just be pure speculation. I am saying this, because I get a lot of pm’s about this type of question. I also understand that not having an answer regarding therapies is frustrating, but the reality is that we have to take it one step at a time. When the time does come, however, we increasingly are having the right specialists in our scientific network to be able to evaluate cutting edge therapeutic approaches. Again, like I have said many times in the past: We are not promising a cure or anything else. We are just doing our best to advance the science and understanding related to this problem. I strongly believe that we need to fully understand this problem to have a better chance at treating it.

As always, hang in there.

Thanks.

Awor

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Hello all

Here is a quick update from the research side:

Research Project Status

Project working name: 1. AR expression in penile tissue
Study is completed, no further patients are required. Publication date is still open.

Project working name: 2. Full genome gene expression in penile tissue
We unfortunately couldn’t match up with Project 1 and will need to apply for separate approval. Currently working on protocol and setup for this second study. Will start recruiting once we have everything set up again and have review board approval. In other words, this one is delayed.

Project working name: 3. Genetics study
No change in status.

Project working name: 4. Effect of PFS on neurosteroids
One further patient has been tested and another is waiting in line. Once results are available from the next two patients, the scientists will decide on how to proceed. In other words, there will be no further recruiting at this point until data has been analyzed from additional two patients.

Project working name: 5. Study of epigenetic effects involved in PFS
No change, on track.

Project working name: 6. Proteomic study
We have a preliminary budget for this one now. This will require six digit funding, and therefore must be put onto back burner for now.

Please be patient everyone. Most of the time I can sacrifice these days I am spending on background organizational tasks. I promise you all that I will update the forum as we progress, which unfortunately is not as fast as we all would like. The update may be only every few months. But we are moving, so please have confidence. Please also refrain from sending me pm’s about updates. I know everyone is eager for news, but we are working on basic science research here. Things move slow and there is a lot of organizational work involved, which is hard to do part time. We are all doing our best.

Awor

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A discussion thread for this topic can be found here:

2012 Scientific Research Initiatives into the Post-Finasteride Syndrome - DISCUSSION THREAD

Research Update

The reason I am writing this update is because the pilot “Project working name: 4. Effect of PFS on neurosteroids” has yielded excellent results so far. Therefore, the study will be completed and another two patients are required.

The patients should be available to travel to northern Italy. We are looking for patients with strong neuro/cognitive adverse reactions resulting from finasteride use, such as depression, anxiety, impaired memory. Other inclusion criteria are:

  • Male gender
  • Having taken finasteride, but not used it for at least 6 months preceding study
  • Age >18 and <50
  • Otherwise healthy, as indicated by normal blood chemistries and BMI <40kg/m2

Exclusion criteria are:

  • Any past or active major illness (i.e. cancer or HIV)
  • Any past or active hemochromatosis, hypogonadism or hypothalamic/pituitary disease
  • Current use or use in the past six months of any hormonal substance or anabolic steroid, including testosterone, DHT, DHEA, HCG, anti-androgens and aromatase inhibitors
  • Current use or use in the past six months of any antidepressant medication
  • Self-reported or diagnosed sexual dysfunction before finasteride use
  • Diagnosis of psychiatric problems before finasteride use (anxiety, panic attacks, depression, psychosis, neurosis, etc.).

Time frame is ASAP. Please pm me if you are available to participate. I will fill you in on further details via pm.

Status of other projects:

Project working name: 1. AR expression in penile tissue
No change from last update.

Project working name: 2. Full genome gene expression in penile tissue
Still working on study setup and protocol. This project will potentially become the lead project, onto which projects 5 and 6 will get aligned. This makes more sense at this stage, because the results of project #2 are important input for #5 and #6.

Project working name: 3. Genetics study
No change in status.

Project working name: 4. Effect of PFS on neurosteroids
See intro.

Project working name: 5. Study of epigenetic effects involved in PFS
Delayed. Aiming to get #2 done first.

Project working name: 6. Proteomic study
No change. This can’t be started until we have results from #2 (and funding).

Next update in September time frame.

Awor

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看看当年awor试图做了多少事?太不可思议了!

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Project # 2 was Baylor…the proteomic study sounds interesting shame awor doesn’t come back now to see the fruits of his labor .Hard to believe 2012 was 10 years ago…Things have changed so much since then…

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Does anyone know how is awor doing?

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We are glad to have such a person as awor, but we are sad that we have only one awor,Lone hero

But he is not here anymore???

He should just stop running this forum. I think Mitch they still keep in touch with him.In fact, the problem now is how to find a rich man and support us to follow the road of awor

Oh glad to hear that he is still working on pfs.

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As far as I’m aware he has taken a step back to focus on his personal life.

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Yes, I heard the news too. I mean, he still keeps in touch with some of us. He knows what’s happening now, doesn’t he😁

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I find the conversations of 2012 more engaging, upbeat and enlightening than the ones of today on this forum…seems there was more of a following here and belief than today’s posters who still seem to deny or just don’t except the science as fully-fledged…even with the recent studies and fund raising they’re seemed more behind the movement

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Totally agree