Fight PFS depression

General Discussion
#1

My dear friends,
I am a health care professional who was prescribed finasteride for an enlarged prostate in early 2018. Besides being a physician, I had never heard of PFS. Within a few weeks of starting finasteride I started developing inexplicable anxiety. I didn’t understand why initially but I soon figured out it was the finasteride. I quit the medication in late March and the anxiety improved but by May I was hit hard by PFS. Of all the symptoms, the most severe was depression. As I searched for answers and treatments I realized there were almost none. I looked at the “PFS foundation” site and there are several articles but the articles basically described the symptoms of PFS without giving any help or treatment/management advice. What was even more concerning is that as I searched I did not find any published article on PFS related depression and I did not see that anyone is studying it to determine its pattern, its prognosis, its duration, its evolution etc. I emailed the “PFS foundation” about this but got no reply.

In medicine, the path to finding treatments/solutions is to understand a disease. Being a physician, I am able to understand the pattern of my symptoms better. However I don’t know if other PFS patients have symptoms with similar patterns. Since I did not see that anyone is addressing PFS related depression and being that I am in health care and have research background, I decided to move ahead myself and reach out to other PFS patients suffering from depression. I would like to gather information about patient’s depression to determine whether there is a pattern to the symptoms, how it evolves over time, what has been helpful, what has made things worst etc and use the information to help each other and possibly stimulate further study. The study would be anonymous, meaning I don’t need names or locations, just what has happened and what is happening.

Following is a list of 15 questions which I would like to ask that you kindly answer to help me start the fight against PFS depression. I will give my personal answers in parentheses as an example. You can copy and paste my questions and put your answers in parentheses.

ONSET MY ANSWERS IN PARENTHESES

  1. What is your age group? (50-60)
  2. When approximately did you start taking finasteride? (January 2018)
  3. When did you stop taking finasteride? (March 2018)
  4. When did the PFS symptoms start? (mid-May 2018)
  5. What were all the symptoms you had? (Initially worsening anxiety which progressed to severe depression by late May. Loss of all desire for sex. Ringing in the ears. )

DEPRESSION

  1. Do you have a previous history of depression or traumatic brain injury (history of depression or TBI prior to starting finasteride)? (No)
  2. On a scale of 0-10, zero being no depression and 10 being devastating/excruciating depression, what was the worst score you had/have? (9-10)
  3. Were there hours or days when you were NOT depressed? (Yes, but very few)
  4. How many days a month were you depressed? (27-28)
  5. Did the severity of the depression fluctuate in a predictable way during the day? (Yes, depression was milder in the morning and worsened as the day progressed becoming severe in the afternoon and into late afternoon before starting to improve in the evening).
  6. As the weeks and months went by, did you see the depression slowly improving, being stable, or worsening? (very slight improvement by late July. Improvement was in that depression was slightly less severe and lasted a little less).
  7. How much did the depression change? (Slightly better)
  8. Were there things that helped with managing your depression like medications, habits, foods, other things? (Yes. I stopped reading the PFS horror stories on line. Focusing on getting better sleep. Low dose Ritalin helped when symptoms were at their worst. Staying active. Watching TV programs I enjoyed when I was young. Going for walks with my family)
  9. Were there things that made your depression worse? (Reading PFS stories on line. Not sleeping enough)
  10. How would you rate/score your depression now compared to when PFS/depression started? (My depression score was 9-10 initially, it is 8 now)

Thank you very much for taking the time to answer these questions. As I mentioned above, this is an anonymous survey. I also don’t need to know your age or geographic location. I would ask that you give me your age range (eg 20-30 or 30-40) so I can see whether depression affects different age groups differently.

Thank you again for helping in the fight against PFS.

Zurich787

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#2

Thank you for this. I’m currently on vortioxetine and doing better.
My case is a bit complex as I got symptoms several months after quitting and not exactly a couple of weeks out like many people, so I don’t want to skew your results but I hope others will notice this and fill it in for you.

#3

Depression and suicidal thoughts usually go away for most people in 8-10 months. I had both and they went away, the same for a lot of other members.

There’s nothing else you can really do as anti-depressants can cause PFS. Wait it out.

If you want to do research to help other people whose depression hasn’t gone away then good luck.

#4

That’s like saying any symptom would go away in 8-10 months, which isn’t really true. Let’s not forget there have been numerous suicides.

#5

it kinda is, you’re right, but I remember reading people like Mew and others saying depression usually goes away when I first looked it up. And that’s what happened to me so I’m assuming for most depression does go away. The same could be said about a lot of other side effects that do indeed get better with time and that’s an important factor to consider.

Information like that can help prevent rash suicides.

If I had to deal with the same side effects I had 3-5 months in today such as depression, frequent urination, and insomnia my life would be much worse. But I read all those things would probably get better and they did. Having that information gave me a lot of relief.

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#6

Thanks for mentioning that tid bit. Thats actually really significant, and obviously we shouldn’t give false hope but if thats your own personal experience its a different story. Im truly starting to think that two biggest factors to side effects are pre-disposition and time on the respective drug - that being said, you never know if the person reading your comments may be experiencing the same side effects with the same timeline as yourself. Its important to mention what you just said.

#7

Yes well,time may or may not change your symptoms for better or for worse.
Usually it changes them for better but a quick look on the website and the scarse literature you’ll find it’s not always the case.

#8

So sorry to hear of your position @Giatriko, I hope you are feeling better as you read this. I feel I must ask you as a medical practitioner, if you know doctors and professors who would be interested and able to help PFS sufferers? As you know how bad it can get, could you make some calls?

Lots of people here struggle to be taken seriously by their doctor, you are in a position where your experience could really help other practitioners understand the predicament sufferers find themselves in.

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#9

It doesn’t matter if symptoms started later. The information would be valuable. Please take the time to answer the questions when you can. Thank you.

#10

Thank you Ibv for your input

#11

Unfortunately that few doctors I have asked are not even aware of the existence of PFS. I am a physician and never new that PFS existed. It is very hard because the number of cases is (thankfully) small, but this creates a problem in that most doctors are not aware of the problem and in addition in any given town it is unlikely that there would be too many PFS patients. I would be happy to talk to other doctors if they are not taking their patient seriously. My doctor didn’t believe initially but he has known me for years and it was hard to convince him.

My hope with the questionnaire is to collect information to better understand this syndrome and then make it available to everyone. The information available currently is all over the place. Nobody knows for sure what is going on and what to expect.

All the best.

#12

Hi, @Giatriko. I realise this is an old post, but I’ve just joined the forum recently, and would gladly help by completing your questionnaire, if you still require participants in your survey.

#13

@DTvan, can I ask that you take part in the projects we are running here:

The survey we have created will deliver data that will allow our condition to be profiled appropriately and will be part of a major step forward for patients with this condition. It is comprehensive and has taken thousands of hours to hone and make sure that the data collected will be of significance.

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#14

Thanks, @Greek. I’ve completed the survey that was sent to me by Propeciahelp.com. Assuming it’s the same one you’ve mentioned?

Will think about the 23andme part. Might be worthwile. Good luck with your efforts!

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#15

I am 19 years old and relate very closely, the depression sucks. Ive been off for 9 days after 13 months of 1mg/day and im slowly barely improving I also noticed that it peaks at mid day and get less intenese as the day goes on. The anxiety likely caused my depressionn.

#16

No need to worry at this point, give it some time.