JN- 'Printable Information Booklet' AND Formal list of sufferers.

General Discussion
#1

Right chaps.

I want to make 2 points.

  1. I want to make a Printable Information Booklet. Maybe it can be attached to this website. Having spent years fighting blindly in the dark, I think we need to ease the path of sufferers.

The printable booklet will be a succinct collation of information on this website. It will help you and moreover, the people we have to deal with on a daily basis. It will be a reference guide to help…the new endocrinologist you are about to meet who is ‘sceptical about all this’…the stupid customs officer who won’t let you in to his country with your injectables and steroids…the GP (family doctor) who refuses to test your E2 levels as ‘it doesn’t need to be tested in a man your age’…

We have to educate people. The doubters. Those who block our paths.

The structure is this

  • The problem. A decription of finasteride, the effects it had, number of sufferers, list of side effects.

  • Theories

  • Cures, including TRT, HGH, more conservative measures.

  • Patient testimonials. A succinct summary of the experience of say, 10 men who have suffered the typical side-effects of finasteride. Patient confidentiality will be maintained, using initials of patients. I would like to attach hormone profile discrepancies here.

  • Blood tests and other investigations required in treatment (to help patients and family doctors)

  • Doctors who
    acknowledge that finasteride has caused a problem
    involved in the research
    involved in treatment

Including DOCTOR TESTIMONIALS from respected doctors (ie) Dr Crisler, Dr Stephens (Michigan), stating that finasteride sufferers are LIKELY to require steroids and/or HGH on a permanent basis as a cure to finasteride side effects. (This is critical to us. We NEED access to these drugs and therefore we NEED respected doctors to state this unequivocally). And their experience in treating us (psychological issues, chronic issues, social issues and our needs)

Contact details of these doctors.

  • Contact information (ie) this website.

    I also think we should set up an official ‘finasteride sufferers’ group with a president and proper membership. We NEED to formalise our issues and set them in stone. Therefore we will increase our confidence and the effect we can have on ourselves.

  1. I think a formal list needs to be made of all the sufferers around the world. This makes it official. It makes our disease official. It increases our punching power.

If it’s ok, I’m going to create a form to fill in for EVERY finasteride sufferer in the world. I want names, addresses, telephone numbers, email addresses. I think one person should collate this information. Being a doctor, I am happy to do this. I will respect patient confidentiality.

I am currently in the process of trying to legitimately import HGH from China into Australia (now where I live). I have to present my case to Canberra. I am facing a beuracratic challenge which I propose to win. If I can present the information in the booklet plus show there is an official ‘Finasteride Sufferers Group’ and a list of case studies around the world, I will win.

I am not doing this for selfish reasons. Other chaps will come across the same beuracratic hurdles and you will need to show EVIDENCE. Everything in medicine is evidence based.

MEW, I don’t want to stand on your toes or cramp your style or invade your space.

I WILL create this booklet. That’s my job.

Do you want to be president of ‘Finasteride Sufferers Group’?

Do you adhere to a confidential questionnaire being sent to every member here, attaining full contact details, and being sent to an agreed email address? A formal database.

JN

#2

mmm, just been checking out other posts. It seems FDA Canada have been collating adverse effects.

That said, is anyone collating a list of patient sufferers with names, full contact details etc?

Who is the Big Daddy of the Finasteride Sufferers?

Does an official ‘Finasteride Sufferers Group’ sound like a good idea to be in charge of EVERYTHING?

#3

sufferer2001recovered2009,

I certainly can’t speak for everyone, but while I think your booklet is a great idea, I’m certainly not ready to release my personal information to be printed in a booklet.

I’m just not there yet. I know I am still quite a ways from feeling like I am recovered. Maybe, when I feel I very close to being the person that I was I’ll feel differently about my name printed in a book to help others.
But the reality is what makes this such a difficult problem to deal with, is the embaressment and humiliation associated with the sexual side effects.

I personally waited far too long to admit I had a problem. I was embarrassed to talk to my primary care dr about it. Then my fear of humiliation became a reality in my doctor’s office. I needed a referral for an endo dr. The dr gave my file to the receptionist to try to find an endo dr the area. She loudly asked me questions about my condition in front of while two young receptionists were working next to her. It was humiliating.

That is the biggest problem with the side effects from this drug is the embarrassment associated with being labeled sexually dysfunctional. I can only imagine how many men that are actively using this drug or have used it that are suffering and have done nothing, simply because they can’t find the courage to deal with the humiliation.

It’s a great thing that your trying to do and I truly hope you can bring a book to be published about what this drug is doing to men around the world. I do believe the number of men suffering is probably staggering.

How many men do you think just read this site, never post anything because they are not willing to admit they have a serious problem. I was one of those guys. I came here a few times, read some of the posts and said nah they are just worrying too much. Then when I finally took the
time to read a few of the member stories, I couldn’t believe some of the
side effects they were experiencing, that I was also experiencing.
I didn’t even think for a second that some of the things I was feeling were caused from this drug.

It is a medical travisty that this product exists and there is no publication that addresses the number of men that have permenant side effects from this drug. It is also crazy to think that the few dozen side effects this drug can cause are not published by a neutral source with patient data to back it up.

I wish you luck with the book, but I think finding men willing to publish their names may be difficult.

#4

Congratulations for the initiative: it is a great idea!

As bostonusa2009, I am not ready to disclose my full details, but I don’t mind giving restricted information such as initials, and contributing with my story or translation into Spanish when you finish it.

Thanks, JN

#5

I agree with Jairus. I would give my inicials and story and provide translation to portuguese.

#6

i would write down my whole story… 14 months brainfog from 3 pills… i´m on the way to recover… 2-3 months more it should be done

#7

NO, I don’t want to PUBLISH names and contact details of sufferers.

I want to keep a PRIVATE AND CONFIDENTIAL DATABASE of names and contact details.

As I am a doctor, maybe I have the authority and am in the position to keep this database. Someone HAS to keep names and details of patients. I will chat to MEW about this.

I will do this booklet. It won’t be a book though!

JN