Hello,
If you are a new patient suffering from Post-Finasteride Syndrome, or an existing patient just finding us, this forum and our charity are here to help you.
While we cannot provide you with a treatment or cure, our charity, PFS Network, is working with world-leading researchers to identify the mechanisms driving PFS, a necessary step in developing targeted therapeutic treatments. Please view and support our ongoing research initiatives here.
Please know that some patients experience improvements over time to varying degrees. While we cannot guarantee this will be the case for you, please allow yourself time to improve and know there is hope for the future.
How we can help you
Research
The underlying mechanisms driving PFS are currently unclear. More research is needed to identify them so we can work towards developing effective therapeutic treatments for all patients.
The most important patient-focused study on Post-Finasteride Syndrome to date revealed persistent overexpression of the androgen receptor and widespread and significant deregulation of gene expressions relevant to the broad symptoms experienced by patients. You can find a summary of published research on our website.
PFS Network works with leading scientists and our first project, titled “Elucidating epigenetic mechanisms as a cause of Post-Finasteride Syndrome” has been fully funded to begin in 2022 at the Institute for Human Genetics in Germany. This project will build upon Baylor College of Medicine’s results, and the researchers involved have been published in Nature and Cell, the world’s two leading scientific journals.
Our charity is now aiming to raise €200,000 annually so further studies can begin without delay. This is vitally important and we deeply appreciate any support you and your family can provide.
Valuable resources to help you navigate PFS
We have created many valuable assets to help you navigate this difficult situation.
- FAQs for new users. Many patients have the same questions when they first develop PFS. Drawing upon 15 years of data and patient experiences, we’ve created this helpful FAQ guide for new patients.
- Information pack for your family and loved ones. Having your family’s support can have a noticeable impact on your emotional wellbeing. Denial or dismissal of PFS can lead to further distress and rupture your support networks. This presentation provides a thorough overview of PFS, including our explainer video, published scientific literature, a simplified scientific explanation and counterarguments to many mistruths they may read elsewhere.
- Downloadable cover letter and study abstract form for clinicians. Use this helpful resource to inform your doctor about PFS and ensure your case is taken seriously and appropriately reported. We wrote a blog post to help you navigate the conversation.
- Quarterly webinars. It’s totally normal to feel pessimistic about the future. We encourage new patients to join us every 3 months to hear updates on research and other important projects. It’s also a great chance to ask questions and meet patients outside of the forum.
- PFS Network Blog. The PFS Network blog is full of helpful content, articles and the latest news about PFS.
Sign up to our mailing list for updates
Our mailing list is the best place to get important updates about PFS research and ongoing awareness efforts. If you wish to join our mailing list, simply send @Sugarhouse a PM by clicking on his username and saying you’d like to join. Alternatively, you can signup on the homepage of our website.
Join the discussion
After reading and agreeing to abide by our Community Rules, Privacy policy and Terms of Service, please sign up to our forum. It is particularly important you make sure you are fully aware of the Community Rules as membership this forum is dependent on adherence to these simple guidelines.
Please first introduce yourself by sharing your story in the member stories category. This is a requirement before we can approve any of your posts.
Propeciahelp is a patient support forum and is a tremendous resource due to the volume of members’ experiences. It is valuable to share what you have personally experienced including your use, symptom onset and persistent symptoms. Do not be afraid to share your feelings and how your life has been affected in as much detail as you are comfortable with.
Propeciahelp can also be a valuable source of support during difficult times. Please don’t just use this forum to discuss attempts at therapeutic relief. Use it to connect with other patients, talk about your day and show support for others. Be a positive contributor and help our community flourish.
If you are struggling to use the forum, please click here to watch the Discourse 101 introductory video.
How you can help us
Every patient can help progress understanding and awareness of PFS, and move us closer to reliable therapeutic treatments. Most actions take very little time and cost no money, but when performed by hundreds of patients these actions will deliver meaningful data and create a voice that cannot be ignored.
Donate
Donating to ongoing research is the most simple and impactful action any patient or their family can make. You can learn more about upcoming research and donate at pfsnetwork.org/donate. If you are comfortable asking your family and friends for help, please consider running a GoFundMe using our simple template. Recurring donations are especially helpful.
Get your family involved
Patients will not be able to solve this problem alone. We need the support of family and friends.
Talk to your family and friends about what has happened to you using our Family Information Pack, and make them a supporter. Offer them support through our Family Group, and ask them to also set up a recurring donation.
Speak publicly
Join over a dozen others and speak on the PFS Network podcast. Patients often lament the lack of interest on PFS. We need more patients to speak publicly to alert decision makers and researchers to the problem.
Our group is currently organising participants for season two of our podcast series. If you are interested, please reach out.
Report your reaction
It is vitally important that all affected patients report their symptoms to their national bodies responsible for pharmacovigilance. Patient reports have already lead to increased warning labelling in various countries, and are essential for increasing interest in the issue. If you have not submitted an adverse reaction report yet, please do so without delay. Please find a list of all regulatory agencies worldwide on our website.
Spread the word
In a rare disease community, it’s vital that patients support our cause through word of mouth. Please also consider asking other patients that you may know in your private life or from other forums, WhatApp chats, Facebook groups etc. to contribute to our projects. Every participant counts, and will help us speed progress towards a better future for us all.
Volunteer
For our long-term mission to be successful we rely on volunteer support. You do not need any particular skills to volunteer, just enthusiasm. Please reach out if you are able to help.
Thank you for joining our forum, and welcome.
With gratitude,
The propeciahelp/PFS Network team