Odin's PFS Journey

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)?
United States

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

What is your current age, height, weight?
37 years old, 6’, 160 lbs

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.)?
1 mg daily

What condition was being treated with the drug?
hair loss

For how long did you take the drug (weeks/months/years)?
~1 year

How old were you, and WHEN (date) did you start the drug?
31 years old in 2014

How old were you when you quit, and WHEN (date) did you quit?
32 years old in 2015

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

cold turkey

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

What side effects did you experience that have yet to resolve since discontinuation?

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
[x ] Confusion
[x ] Memory Loss / Forgetfulness
[x ] Stumbling over Words / Losing Train of Thought
[x ] Slurring of Speech
[x ] Lack of Motivation / Feeling Passive / Complacency
Extreme Anxiety / Panic Attacks
[ x] Severe Depression / Melancholy
Suicidal Thoughts

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

Misc
Prostate pain
[ x] 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
[ x] 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?

TRT for hypogonadism and Levothyroxine for Hypothyroidism

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)?

Anything not listed in the above questions you’d like to share about your experience?

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

I have been a member of this site for a while but never introduced myself. I’m in my 30s and was on Finasteride for about a year from 2014 to 2015. I felt fine for the most part while on it. Then one night, I kissed a girl. The next day, I felt like I had the flu and a hangover. I felt extremely fatigued and had horrible tinnitus. I assumed it would pass, but it never did. A couple weeks later I got pain in my testicles, which lasted for a couple weeks. The symptoms only got progressively worse over the next few months. I went to several doctors to try to figure out the cause. Eventually, I found out from my PCP that I had EBV. I’m guessing that EBV triggered the PFS that I currently have based on the posts I’ve read here. She told me that EBV did not account for the severity of my symptoms though. I later went to an endocrinologist and found out that I had hypogonadism. Shortly after that, I found out I had hypothyroidism (Hashimoto’s). I went on Levothyroxine and testosterone replacement therapy. Neither one resulted in any kind of improvement. My muscle fatigue and exercise intolerance has only gotten worse over the years to where I now spend most of my day in bed. In addition, I developed eczema and have that telltale eczema rash on the side of my face that many others here have.

The following is a more detailed list of my symptoms/conditions. I will probably edit this post with more information later.

Medical Conditions: Major Depressive Disorder, Autism Spectrum Disorder, Hashimoto’s thyroiditis, hypothyroidism, hypogonadism, tinnitus, hyperacusis, attention deficit disorder

-Severe, persistent muscle fatigue/exhaustion that makes it extremely difficult to get out of bed in the morning. I must lie in bed for 1-2 hours before I feel well enough to get up to brush teeth. I don’t feel well enough to sit at computer desk for another 2 to 3 hours.

  • Muscle fatigue becomes abruptly worse whenever I face small amounts of psychological stress.

  • I have severe exercise intolerance, particularly while engaged in simple household chores. I have to rest my arms for a couple minutes after just 60 to 120 seconds of using them during activities like washing dishes and folding clothes or they start to tremble and become extremely fatigued. It makes daily life very hard. I really struggle with food preparation because of my arms. I try to make easy things that can be microwaved.

-If I overexert myself – do much more than basic hygiene, cook, and another activity like laundry or walk to the grocery store, regardless of how much I rest in between, I’m almost completely wiped out the next day and am too sick to leave bed.

-I have difficulty doing precision movements with my hands for extended periods of time (greater than 2 minutes). I can only write with a pen continuously for a minute or so before I have to rest arm. At times I’m not even able to type on keyboard or hold mouse for very long. My arms just start to get a trembling feeling and feel very fatigued.

-It’s difficult to sit in my computer chair for long periods of time. My muscles get so fatigued, and I have to lie down. I feel like my whole body has to be supported all the time.

-Hot temperatures exacerbate the muscle fatigue. Also, whenever I get slightly warm, I get a painful prickly feeling on my head, back, and chest (feels like being stabbed with tiny needles). If the water in the shower gets too warm, the same thing happens. I can’t even handle going outside when it’s over 70 or so degrees.

-Extreme constant brain fog. Severe memory and concentration problems. I zone in and out all day. I get confused easily when people are talking to me. It’s hard to even focus on watching a tv show. I have a hard time understanding what I read now too. I have to reread something multiple times for me to process it.

-Extreme sound sensitivity that’s gotten progressively worse. I’ve always had sound sensitivities due to asperger’s syndrome, but it’s never been this severe. It constantly causes me anxiety. I’m especially sensitive to noises caused by car engines, footsteps from landlord upstairs, lawn mowers, birds, and phone sounds. It causes extreme pain/discomfort in my ears. I don’t even want to ride public transport anymore or sit in waiting rooms at doctors.

-I have constant tinnitus that causes painful ringing in ears and constant anxiety. Ringing and pain increases when I listen to a white noise like a fan or the humming of a machine. This is the most difficult symptom I have. It definitely gets worse whenever I experience a bad energy crash.

-Increasing sensitivity to most food. Eating anything with fructose, sucrose, or sorbitol causes intense fatigue/weakness, and I break out in eczema. I’ve always had a sensitivity to high fructose foods, but nowhere near this. I’ve had to eat a diet of just clean meat (chicken) and fructose free vegetables like turnip greens and water chestnuts and white pasta.

-Itchy dry skin everywhere with eczema flare-ups in addition to a constant red rash on side of face

-I often get lightheaded/dizzy when I stand up and always feel kind of unsteady when I’m standing/walking.

2 Likes

Hi @odin83,

I know this isn’t where you want to be, but nevertheless I wish you a warm, belated welcome to the forum. I’m awfully sorry to hear about what you’re going through. Your symptom profile sounds very serious and I wish you all the strength in dealing with that.

Words do not suffice to express the level of injustice we’ve been subjected to but there are people on this forum committed to doing everything in our power to try and rectify that. While I appreciate the severity of your condition massively limits what you are able to contribute, if you can find the strength I urge you to follow as many of these steps as you can to try and help further our cause: New user? START HERE .

I again wish you strength in dealing with your torrid condition, you’ve done extremely well in dealing with it thus far. If we all work together as a community I believe we can achieve a brighter future.

All the best

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Sorry to hear this mate. This forum is one of the only places where there is understanding and compassion for this life changing disease… Do you have support in place? One or two improve with time even after years. Don’t give up hope.

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I just cannot believe that we put ourselves through so much for a bit of hair. It’s just hair. Previous generations were so lucky they didn’t have those crazy drugs. cocaine is much safer than this.

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Welcome Odin, sorry to read your story. Sounds like your living in a constant hell. Your a straight soldier for marching through it for multiple years.

I can definitely testify that constant tinnitus is a hell to live in. Its been one of the most difficult symptoms for me to handle as well. I did experience the tinnitus exactly the way you describe it, with the sound sensitivity and all. Some sounds feel as if they go directly to my brain and it causes anxiety.

Luckily I did notice a decrease of the tinnitus, since im almost 5 months off I hope it will subside and stays at a minimal level. How bad is yours currently on a scale of 0 to 10?

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It’s definitely a 10. I hate how even my computer fan increasing the ringing. If I could drink to mitigate the ringing I would, but we all know how sick alcohol makes us.

Thats horrible…

Isnt your doctor able to help you to diminish the level of tinnitus?

The doctors haven’t been willing to try anything so far. Have you had any luck with any medications?

The neurologist said there’s nothing they can physically identify. I’m guessing the Finasteride did something to the dopamine receptors in our brains or something to cause the tinnitus.

Firstly, my tinnitus was clearly located in my left ear. I also had a dull pain/ache and pressure behind my ear drum.

At the onset of tinnitus my doctor gave a high course of prednisone. This didnt solve anything.

I later did some research and read many articles. The following link references many articles about tinnitus and a possible remedy through inner ear injections, http://www.noiseandhealth.org/article.asp?issn=1463-1741;year=2013;volume=15;issue=63;spage=83;epage=90;aulast=Meyer

I had this done last month and it did relieve me from the inner ear pain/pressure.
My tinnitus has gone down too, currently it fluctuates between a 1 and 4 depending on the day.

Thanks for the tip. Did you go to an ENT for that?

yes, he’s the only one that can do it.

@doomed80

Check this out!

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Hey. I was reading your article and was curious what exactly the doctor injected into your ear that finally improved your tinnitus. Could you please give me specifics so I can talk to my ENT about it?

The ENT injected Dexamethasone into my inner ear 3x in a period of a month (after numbing my ear with lidocaine).

I kind of convinced my ENT that I was willing to try anything to find relief from the horrendous tinnitus. I convinced him with the research articles and he said that if it doesnt cure me, it wont cause any harm either.

But everybody’s situation is different. I had both tinnitus as well as a dull pain/ache behind my eardrum for a couple months. And I got it done within the 6 months time period (the sooner you do it, the more likely you’ll get a benefit). Basically, it is considered chronic tinnitus after 6 months.

And im not claiming that im tinnitus free at the moment, but it has decreased a lot for me, from a 10/10 to a 3/10 on a bad day.

That’s amazing! You got it done a total of 3 times in one month? Did you have any additional injections after that?

I know, very happy that I tried it.

Correct, no nothing after that. It was sensitive and the volume fluctuated for about 2 to 3 weeks (from low to very high), after that it settled at a much lower volume. I now mostly can only hear some sound at night, when im in my bed and its very quite.