NEW MEMBER - In need of support - Please Read (UK)

Member Stories
#1

My name is Mark. Here is my story.

  1. Where are you from (country)?
    UK - London

  2. 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?)
    I’ve known about it for some time. General “Propecia” searches in Google.

  3. What is your current age, height, weight?
    31, 5’11, 10.5 Stone (147 Pounds)

3)Do you excercise regularly? If so, what type of excercise?
Weekly resistance training

  1. What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)?
    Healthy normal balanced diet.

5)Why did you take Finasteride (hair loss, BPH, other)?
Hair Loss.

  1. For how long did you take Finasteride (weeks/months/years)?
    5-6 weeks

  2. How old were you, and WHEN (date) did you start Finasteride?
    31, Sometime in January 2013. Can’t remember exactly.

  3. How old were you when you quit, and WHEN (date) did you quit?
    Age 31, 17 February 2013

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

  5. What type of Finasteride did you use – Propecia, Proscar, Fincar or other generic?
    Propecia

  6. What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?
    Only 0.5mg (Sun, Tues, Thurs). My plan was to work my way up to 1mg every other day.

12)How long into your use of Finasteride did you notice the onset of side effects?
2 Weeks noticed semen changes. Was willing to overlook.

  1. What side effects did you experience while on the drug that have yet to resolve since discontinuation?

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

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

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

Misc
[ x] Prostate pain
[ ] Persistent Fatigue / Exhaustion
[ x] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[ x] Vision - Acuity Decrease / Blurriness
[ ] Increased hair loss
[ x] Frequent urination
[ x] Lowered body temperature

  1. What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
    None. Am due to consult my GP (Dr) this week, and request blood tests.

  2. If you have pre or post-Finasteride bloodtests, what hormonal changes have you encountered since discontinuing the drug (pls post your test results in the “Blood Tests” section and link to them in your post)?
    N/A

  3. Anything not listed in the above questions you’d like to share about your experience with Finasteride?
    N/A

  4. Tell us your story, in your own words, about your Finasteride usage and side effects experienced while on/off the drug.

I started taking Propecia sometime in early/mid January 2013. I had began a New Year workout regime and had also started taking L-Tyrosine supplements to give me more energy.

1st Set of Symptoms - Sexual
My first symptoms were typical and appeared within the second week: watery ejuculation and slight loss of hardness while erect.

2nd Set of Symptoms - Temperature/Skin (28th Jan - 17th Feb)
I noticed that despite exercising regularly my body temperature was always cold, and during vigorous exercise my hands remained cold for a long time, sometimes all the way through. I also noticed my skin drying out, I thought this was just the cold weather.

Most of my symptoms at this time appeared from using minoxidil. They included: dizziness, heart palpitations, sweating palms and swollen hands and feet. As soon I noticed these symptoms I stopped using minoxidil and the sides went away.

On sunday 17th February I took my last half Propecia. That night my dick was almost non responsive when I tried to masturbate and my ejaculate was very watery. I thought It would be best to start tailing off.

3rd Set of Symptoms - Metabolic/Brain (18th Feb - 24th Feb)
The third set of symptoms involved what could be considered a crash, and happened the day after experiencing a heavy sexual side effect. It led me to quitting Propecia cold turkey instead of tailing off.

On Monday 18th Feb 2013 I ate my pre workout meal, drank some tea, and took a tyrosine supplement pill. I worked out very hard. Upon completion my body felt weak, rather than invigorated and energized like it previously always felt. I was dizzy and fatigued. My appetite suddenly went sky high and I was shaking. I assumed that the tyrosine had reacted badly with me, despite not doing so before.

I did not take any more Propecia or L-Tyrosine supplements after this event.

Over the following week I noticed several metabolic changes and some odd sensations in my brain.

I needed to eat all the time and I had lost the sensations of satisfaction from food in my brain. I could no longer feel an active caffeine high. Starchy foods did nothing, previously I would feel relaxed and lethargic after eating them. Chocolate and sugar did not seem to register in my brain as it did before. There was no longer any feeling of a chemical change or satisfaction from eating certain foods. I assumed this was all down to the tyrosine ramping up my metabolism.

The weirdest sensation was drinking alcohol. In a panic I purchased some beers to calm me down, when I drank them I felt nothing. No drunk feeling. Nothing. That really freaked me out.

For the rest of the week there were very odd sensations going on in my brain. Something very strange. Like it was trying and failing to chemically process things. Almost like dull movement within. Like it was dying.

By the following week my appetite had reduced to back down to normal. However, my eyes lost their moisture and my ear wax appears to have gone resulting in mild tinnitus. I used to have very waxy ears. Now I am putting olive oil into my ears.

4th Set of Symptoms - Further Sexual/Pain/Severe Emotional Flatness/Anhedonia. (25th Feb - 3rd March)
Sexual sides continued in the form of complete loss of sexual thoughts. Retracting of penis and scrotum. Frequent testical and perineum pain. My testicals took on a life of their own and began moving around constantly.

My mouth was now drying out too. And my body temperature seems to have plummeted further.

The WORST symptom appeared suddenly, four days ago, when everything disappeared from my mind as if all my thoughts, feelings and emotions had been sucked into a black hole. There is no real sense of yesterday or tomorrow. All I can do is perceive what is around me with no sense of connection to it. It is just there, as am I. There is nothing in my mind.

Current Status: Brain Dead (4th March 2013)
My brain is dead. I no longer have any feelings, emotions or internal sensations. That part of my brain has now stopped working.

A dead dick is one thing. A dead mind is something else entirely. I cannot live like this.

Even if my body must suffer, I cannot accept the absence of active thoughts, feelings and emotions. I had no idea the mind could even exist like this.

Is there really any getting over this particular adverse effect? I seriously think this drug has damaged my brain beyond recovery - I truly feel dead inside.

Please help!

#2

Dude, hang in there. All these symptoms will most likely go away as you’re in the early days. There’s nothing to worry about. You did what you had to at the appropriate time.

Only 6 weeks, 0.5mg every other day. In my opinion you have nothing to be concerned. Come back here and post when your recovery starts.

Cheers.

#3

Thank you for your reply gmmoura.

I should also add that I had two test runs of Propecia before committing to the recent 6 weeks.

The first was in May last year, where I took a full 1mg dose for a couple of weeks before noticing sexual sides. So I quit without any obvious issues.

I then tried again in Oct 2012 taking half doses 2 x per week for a couple of weeks to see if sides would diminish. I initally felt a weird sensation in my brain and then stopped with the intention of carrying on in the New Year.

Unfortunately, I tempted fate and gave it another shot. Now I have screwed with my system 1 too many times. I clearly have the onset on PFS. And I am certain that this time, unlike the other times. That it has drastically altered my brain.

I am a complete fool.

#4

I can understand how you can feel like this but you are absolutely 100% not a fool. All blame lies with Merck & the shabby drugs industry & various regulatory bodies etc for this to be allowed on the market in the first place for cosmetic use. Although it doesn’t stop the personal pain of knowing that you’ve taken it. It angers and saddens me to see guys like yourself continuing to fall foul of these corporate, souless c**ts.

#5

Now that’s something I want to take a look at. Please make it clear - did you do these blood tests before or after taking Propecia (maybe while you were still on)? This was not clear to me. Anyways, I’d love to see the results.

Unfortunately, our community lacks something very important: blood tests before & after taking Propecia for comparison purposes.

#6

@gmmoura

Sorry for the confusion, but I did not have blood tests done previously.

When I said “test runs” I meant an intended short/reduced period of Propecia usage simply to see how my body would react. No commitment beyond a couple of weeks.

My current symptoms are worsening day by day. I am so suicidal right now. I feel totally inhuman.

What can I do to maintain myself??? Why is my brain not processing thoughts and sensations anymore?? What the hell is this?

#7

Thank you for your reply Scotsman.

I really need help right now. It feels like my body and brain are shutting down.

I had no idea Propecia altered the brain like this - NO IDEA.

#8

Mark it is very early days for you as you quit on February 17, 2013. It may take a few weeks, months or possibly longer for you to notice significant differences but many guys report the mental side effects tend to get better with time.

In meantime do not panic…get plenty of rest, eat healthy, do not over exert your body… if you feel this site is giving you additional stress, take a break and come back in a few months if your symptoms have not improved. Hopefully with time you will feel better.

If you don’t eat fish, I’d suggest Omega 3 fish oils as they have been documented to help with brain health, neurogenesis, and anti-depressive effects which may be of benefit.

thorne.com/altmedrev/.fulltext/8/4/410.pdf

#9

Thank you Mew.

I will try and take your advice.

I have been taking omega oils for months, and I generally live a healthy lifestyle and eat good quality food.

I have started to shiver, a lot, even when warm.

What is happening to my brain currently far out weighs what is happening to my body. And my dead dick. It feels very much neurological. Like brain damage. There is no communication or sensation within. I have no emotions, feelings, internal visual imagery, feelings of recognition, or sense of any chemical response from food, drugs and supplements.

I also have no desire to sleep. Like my brain doesn’t know how. Yet my mind remains empty, dead. So there is no awareness of worry or anxiety.

I need to report this somewhere, this can’t be ‘brain fog’. If I take my life it will be because of this.

I will try and just work through this week. But, as you know, there is little help, support and understanding for this situation anywhere else.

Thanks.

#10

Dude, don’t do anything or make any decision until you get better. Sounds like you’re in a teeerrible crash. The symptoms you described are well known here, including this sensation of not having feelings. I had them myself when I crashed.

Hang in there. Think of your family and people that love you. They still love you, even if you’re not capable of loving them back nowadays. Don’t try to find strength inside you for the time being - at least until you get better.

#11

I totally get your loss of pleasure in things you typically enjoy, such as food. I also notice I do not get the caffeine high nor do I enjoy the coffee much (I am a coffee head usually). I hadn’t heard anyone else mention that. I can also relate to the flatness in feelings and emotions. I am about 14 months on. I can tell you that it does get better for most in the first few months. The suicidal thoughts are common here, I think in part because of the loss of sexual functioning and libido, but also the loss of “zest” for life. The libido is important in males beyond just sex. It also fuels creativity, motivation, and pleasure in non-sexual things. You will fluctuate in terms of your mental state. Some days it will bother you a lot, others not as much. If suicidal thoughts become persistent definitely seek help for it. See a psychiatrist or psychologist, for example. But I agree with the others that have said that you are still early and you should be patient. Continue a healthy lifestyle and use your social support system as needed.

#12

Update: Saturday 9th March 2013

I was taken to A&E on Tuesday 5th March by a friend as I had become completely despondent and could only talk about suicidal desires.

I told the doctors that I must have damaged my brain from Finasteride use. They ran some tests: ECG, blood, urine.

My body temperature was rapidly changing and the doctors were concerned at how quickly my hands would switch from boiling and veiny to freezing and purple. I was sporadically shivering and had these weird leg spasms which seemed to emanate from my groin. My perineum was experiencing a constant dull throbbing.

Several hours later I was assessed by a psychiatrist, she informed my friend and I that my tests were normal ( I didn’t get the results and was not in the state of mind to ask for them) and that after conferring with the doctors, she had deemed my suicidal ideation a reaction to the effects of a ‘neuro-steroid’. And that I would need ‘will power’ to see it through.

She prescribed some Diazepam and Zopiclone. Unfortunately, the Diazepam did nothing. I was relieved when the Zopiclone kicked in.

Over the last few days my physical state has declined as follows.

  • Loss of sensation in: penis, urethra, testicles, perineum and anus.
  • No spontaneous, nocturnal, or morning erections.
  • Dull sensation in skin
  • Further loss of sensation in eyeballs ( can touch them easily and not react, before they were extremely sensitive)
  • Loss of tingle sensation up and down spine (various methods of initiation)

My system must be really weak. This drug has totally destroyed me. There is no way I can work, let alone exist like this.

The effects on my brain are by far the worst for me. I have all possible cognitive symptoms. I am an empty shell of a human.

I have only just returned home from my friend’s place. I cannot shake the suicidal ideation. It is a permanent fixture now.

I think Fin has completely killed the mechanism for producing 5α-reductase in me, taking my GABA and Serotonin receptors along with it. I have truly lost my mind.

I have an upcoming appointment with Dr. Pierre-Marc Bouloux. My only goal is to survive until this consultation.

But I honestly don’t think I can handle this. I don’t have the will power like the rest of you, my cognitive symptoms are too severe.

This really is hell.

#13

Hey mark,

I’m currently in a crash and I’m from the UK. Let’s work through this together and with others on the forum. I’ve had slight suicidal thoughts too. You are in the very early days like me. Things WILL get better. I hope I can pass some of my positivity onto you. Just read the recovery section for some positive thinking. Doctors are investigating this terrible syndrome. This forum will be your support group as well as your understanding friends and family.

#14

Mark
Hang in there man. Its going to take some time for things to get better. Professor Bouloux has see some PFS patients before, so hopefully he will be understanding and come up with a treatment plan for you.

I quit propecia 2 years ago and its only now that i am starting to feel like myself again. I still have some physical side effects, but the mental side effects have got a lot better.

To help your energy levels try some berocca every morning. Also i’d recommeng including cod liver oil/fish oil tablets into daily diet if you haven’t already done so.
Also try to find things that you enjoy, past times, hobbies, music, film etc.
Whatever you do, don’t let PFS beat you. You need to fight back. I’m sure most guys on the forum will tell you the same.

#15

Hi there Mark

I’m really sorry that you have been hit so hard by this. I’m thinking of you up here in Scotland. It’s good that you’ve got a supportive friend. Although what you are experiencing just now is unimaginably hellish for you and that the medical professions understanding of pfs is still in it’s infancy, it’s good that through your attendance at A & E the medical profession has had to sit up and take notice, especially with your sides being so severe. Make sure that you make full use of any help provided, even if it’s still very much exploratory, as this will provide a permanent record for you regarding a documentation of what has happened and also getting folk on your side. I really hope that things get better for you soon and that you have a supportive network around you. You are not alone and there will be many here, even if just online, that have your back. Take care and if you feel up to it you can let us know how you are doing. P.S. Regarding your suicidal thoughts, although they are currently real enough, as you say they are also the result of some chemical alteration which as I type is being looked at re: a cure, and as many will say, this will be you at your worst. Things WILL get better.

#16

@sfoch, gmmoura, noniman, and scotsman.

Thank you all so much for your responses.

I know that nobody here wants to read doom and gloom. We all need support and optimism. So I really appreciate everything.

This really makes me understand why some people link post Fin symptoms to MS. This feels very much like a neurological disorder or brain damage.

Thank you all.

#17

Hey Noniman, do you think the fish oil has helped you? Is it Omega 3? Which brand? How long have you been taking it for? Thanks!

#18

Joe. I’ve been taking tesco omega 3 fish oil tablets for a few months now.
Not a cure for PFS but it should help with any mental side effects.
There is a separate thread on fish oil here:-
viewtopic.php?f=6&t=7083

#19

Hi guys,

Quick update.

I have been trying to stay positive and active. I am now 3 and a half weeks into my crash and my symptoms are pretty extensive.

So far, my GP is working the theory that this is some sort of withdrawal, or that I may have had a dodgy set of pills.

I don’t wish to dwell, but please help me out on this next set of symptoms.

- Dulled muscle, tendon, and joint sensation / Pain reduction.

I have always had a tight upper back, neck, and calves, which required regular stretching and the occasional chiropractic adjustment to relive the pain. Something has happened to the nerves in my muscles, they seem to have also dulled. I don’t really have any tension or pain.

Further to this, I have experienced a sharp pain in my left knee for at least 3 now. It is most prominent when climbing stairs, taking long walks, and during exercise. This has also dulled to the point of almost non-existent over the last week.

The muscles all over my body are not becoming anywhere near as rigid and as stressed as they have always done. Any kind of resistance or stretching feels very odd. In fact, walking feels odd. My muscles are not retaining any noticeable tension anymore and I feel slightly off balance.

I am not taking any medication and there is little change to my diet as it has always been healthy.

WTF??

Is this subset of symptoms unique to me? Have I now developed psychosomatic symptoms due to the stress?

#20

Guess I found some answers to my questions.

viewtopic.php?f=25&t=1960

viewtopic.php?f=25&t=1988