Good days, bad days, the strange nature of PFS

Welcome to our community. Please fill in the following template as a way of introducing yourself, and helping others to understand your background and situation.

Where are you from (country)? USA

How did you find this forum (Google search – if so, what search terms? Via link from a forum or website – if so, what page? Other?) Google search

What is your current age, height, weight? 51, 5’ 10", 178

What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)? Finasteride

What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)? 5mg

What condition was being treated with the drug? Enlarged prostate

For how long did you take the drug (weeks/months/years)? 2 months

How old were you, and WHEN (date) did you start the drug? 50

How old were you when you quit, and WHEN (date) did you quit? 50

How did you quit (cold turkey or taper off)? Cold turkey

How long into your usage did you notice the onset of side effects? One month

What side effects did you experience that have yet to resolve since discontinuation? Anxiety, depression, tinnitus

Check the boxes that apply. You can save your post first, then interactively check/uncheck the boxes by clicking on them. If your symptoms change, please update your list.

Sexual
[ ] Loss of Libido / Sex Drive
[ ] Erectile Dysfunction
[ ] Complete Impotence
[ ] Loss of Morning Erections
[ ] Loss of Spontaneous Erections
[ ] Loss of Nocturnal Erections
[ ] Watery Ejaculate
[ ] Reduced Ejaculate
[ ] Inability or Difficulty to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility

Mental
[ ] Emotional Blunting / Emotionally Flat
[ ] Difficulty Focusing / Concentrating
[ ] Confusion
[ ] Memory Loss / Forgetfulness
[ ] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[ ] Lack of Motivation / Feeling Passive / Complacency
[ x] Extreme Anxiety / Panic Attacks
[x ] Severe Depression / Melancholy
[ ] Suicidal Thoughts

Physical
[ ] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[ ] Testicular Pain
[ ] Testicular Shrinkage / Loss of Fullness
[ ] Genital numbness / sensitivity decrease
[ ] Weight Gain
[ ] Gynecomastia (male breasts)
[ ] Muscle Wastage
[ ] Muscle Weakness
[ ] Joint Pain
[ ] Dry / Dark Circles under eyes

Misc
[ ] Prostate pain
[ ] Persistent Fatigue / Exhaustion
[ ] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[ ] Vision - Acuity Decrease / Blurriness
[x ] Tinnitus (ringing or high pitched sound in ears)
[ ] Hearing loss
[ ] Increased hair loss
[ ] Frequent urination
[ ] Lowered body temperature

[ ] Other (please explain)

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
Ritalin for depression, silexan for anxiety
If you have pre or post-drug blood tests, what hormonal changes have you encountered since discontinuing the drug (please post your test results in the “Blood Tests” section and link to them in your post)? Low testosterone

Anything not listed in the above questions you’d like to share about your experience? Silexan has been very helpful in making anxiety manageable.

Tell us your story, in your own words, about your usage and side effects experienced while on/off the drug.
I started finasteride in January of 2018 for an enlarged prostate. By mid February I developed inexplicable worsening anxiety. It took me 3-4 weeks to understand that it was linked to finasteride. I stopped finasteride in late March, cold turkey. The anxiety improved over the following 2 weeks but did not resolve. In late May I woke up one morning severely anxious with loud tinnitus. Never had any issues with anxiety, depression or tinnitus before. That morning was like waking up in hell. I made an appointment with my family doctor and started reading about my symptoms. After several hours of search I realized that I had developed PFS. My doctor, a very good and very experienced doctor had never heard of PFS and thought it was something else so he ordered a bunch of tests. I went back to him with a couple of articles on PFS and he accepted the diagnosis.

He started me on buspar for my anxiety. Within 3 days, my anxiety turned into bone crashing depression. I am talking about depression that I didn’t know existed. The tinnitus and anxiety resolved completely but the depression was unbearable. Reading PFS stories made my depression worse as I thought that I may be like this for the rest of my life. Life was certainly not worth living like that. June of 2018 was living hell. Several times I packed a bag at night to go to the psychiatric hospital in my town as I didn’t think I could take the depression any more. However I also worried about how my admission to a psychiatric hospital would affect my family. I never went. What is VERY STRANGE however is that in late June of 2018 we went for a short (4 day) vacation and my symptoms resolved completely!!! I thought that PFS was over and I was cured. I was happy with no depression, anxiety or tinnitus. Then symptoms returned.

By late June, after returning from the short vacation, my symptoms took a strange turn. I would wake up in the morning feeling completely normal. Then as late morning came, my depression would return and would worsen as the hours went by to where by 3-6 pm the depression was severe. There was no anxiety or tinnitus. After 6pm the depression would start to ease off and by 8-9 pm I had no symptoms. This pattern was so predictable that I could tell what time of the day it was by how I felt. Because noon to 6 pm was very tough, one of the doctors on pfsfoundation.org recommended low dose Ritalin when symptoms were severe. My family doctor prescribed 5mg Ritalin tablets which I would cut into 4 (1.25 mg pieces). I would take 1/4 of a Ritalin tablet at noon and it would get me through the work day. It was very helpful. By mid July the depression started to ease off for no clear reason. The last 2 weeks of July I went on a longer vacation and was pretty much symptom free. I felt fine, had no depression, no anxiety, no tinnitus. In fact I forgot that PFS existed. Life had returned to normal. Then one day I had 3 cups of coffee and that seemed to trigger a return of the severe depression in the last couple of days of July.

August came in and I was again severely depressed. For unknown reasons within a week the depression started to ease off but unfortunately again for unknown reasons the anxiety/tinnitus came back with a vengeance. These symptoms started to worsen. By late August they were debilitating. Then I developed severe insomnia. I was prescribed Ativan and used that along with melatonin and vistaril in order to be able to sleep for a few hours. The combination of these 3 drugs helped me get some sleep. Otherwise I would sleep 1-2 hours per night at most.

I reached out to the doctors at pfsfoundation and one of the doctors from Europe gave me the best advice. He recommended silexan, a capsule made from the flowering tops of lavender plants in Germany. By the time I started silexan my symptoms were so bad that I could not work. I filled for disability. Before disability was activated however silexan started to work (it takes about 2 weeks before you see the effects). My anxiety started very slowly to improve week by week. I never went on to disability as silexan made my symptoms manageable. My last day of debilitating anxiety was September 24th. Since then it has become manageable and improving week by week. In the studies done in Europe comparing silexan to Ativan and placebo and in other studies comparing silexan to Paxil and placebo, silexan did as good as Ativan and Paxil without side effects. In fact in all the published studies the side effects of silexan were the same as placebo. The other great benefit I got from silexan (and the same was reported in the studies) is that my insomnia started to improve week by week. I stopped using Ativan initially and only used melatonin and vistaril and I was sleeping fine. After a week of using vistaril and melatonin, I stopped using melatonin and still slept fine. I finally stopped using vistaril too and I am sleeping fine without having to take anything.

In late September I went to Seattle for a 4 day conference and I took a few days of vacation after the conference. While on vacation again, my symptoms resolved completely. However once again I became careless and had a little too much coffee and the symptoms returned.

October has been the best month since PFS hit me in late May. I have mostly had moderate anxiety and tinnitus. Depression has mostly resolved though I do have mild depression at time. In all these months, there have been other good days where symptoms improve or resolve for 1-2 days, only to return.

Things that worsen my symptoms are caffeine and stress. My job is very stressful and I am always worse on days that I work. On the other hand in the 3 times that I took vacations, my symptoms pretty much resolved or almost resolved. That tells me that stress seems to trigger my anxiety to a great extend.

I have also had random days while working where for no reason that I can identify symptoms resolved or almost resolved for a day or two, only to return again for no obvious reason. In addition some days tended to be particularly bad and I could not understand why. I went to the same job, ate the same things.

I don’t know what the future holds. PFS has taught me not to get too optimistic as it has been very unpredictable. Several times I thought it had resolve or it was in the process of resolving, only for symptoms to come back with a vengeance. I was fortunate not to develop sexual dysfunction. I don’t know why I was spared in that regard. I don’t know how many others had similar symptoms to mine and how they did over time.

Here is hoping that all of us improve over time and return to a normal life.

3 Likes

Hi there Giatriko

Thanks for contributing such a detailed post with many interesting observations. I am sure that your story will prove useful for many others here, including your recommendation of the lavender derived Silexan, especially since it appears to have a great side effect profile. It’s great that you have been able to utilise the doctors list over at the PFS Foundation and find some relief from that. It’s testimony to the importance of the existence of the PFS Foundation. I’m also really pleased to read that your doctor accepted that you are experiencing PFS after you showed him a few articles. Your experience shows that things are starting to improve with regards acceptance, due to the ongoing legwork. I feel that this is a major thing. For too long guys have experienced further suffering due to ignorance, and to read of your own experience is extremely heartening . I’m also pleased to hear that you are feeling a lot better recently. I hope that things continue to improve for you.

1 Like

Hi Scotsman,
I have found reading other PFS patients stories helpful and educational so I decided to write my story too. Hope you and me and everyone here have better days coming.

1 Like