A Swede who has been sick since 2013

Member Stories
#1

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)?

Sweden

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?

33 years old 188cm 83kg

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

Proscar

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

1mg a day

What condition was being treated with the drug?

Hairloss

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

Aprroxamently 1 year

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

27 (2012)

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

28 (2013)

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

Cold Turkey

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

Hard to tell but maybe some side effects like concentration, some muscle twitches and weight gain after a while during the intake of the poison. But I clearly remebered the day my penis didnt work anymore. A couple of days later i quit and this hole madness began.

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

Check below and at my inchecked boxes

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
[*] Extreme Anxiety / Panic Attacks
[*] 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
[*] 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?

I have been doing some running, eating normal and have tried some different vitamins, zink etc

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)?

I didnt do any test before the use of proscar but I have some test results afterwards that I am going to share a soon as i have them from the hopital.

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

My story maybe have some different background story compared too the normal member story. First off I actually had some problems with erections before i started with proscar. Specielly when I had been drinking alcohol. I also had prostatis before aswell but I didnt even know I suffered from the diecese. I remebered that I visisted the bathroom like 10 times a day some periods and had hurting ejaculations in rare occasion. Specially if I had several orgasm during one day.
This is, of course, nothing like after my pfs and I always had crazy morning woods. Also my libido was crazy high during my whole life.
But with this as knowledge, firstly I didn’t believe I suffered from PFS (In my head I maybe did know but the denial is strong in this one)

I ate Sertraline (Zoloft) in two occasions after PFS and at the beginning of the second one I had extremely vibrating tremors around all my body, but specially fingers, arms and legs. Also got similiar tremors in head similar to a Parkinson diesese. Of course this is go back and forth but never really disappear.

Gains alot of weights in hips, stomach and in face but the rest is like thinning away. I also noticing still new things appears and other disappear, like my eye vision been slot better the last couple of month

My fatigue is ridiculous, my skin in face are red (but getting better) and dry.

1 Like
#2

Hi NOSOUPFORYOU,

thank you for providing your story and welcome to the forum!

I am sorry this happened to you. As a community we are trying our best to generate awareness of this condition and to initiate research into the driving factors of this condition in the hope to one day find a cure. To do this we need your help. Please check the post below to see some of the important Things you can do to support our endeavours.

You may also have noticed that people with our condition should stay away from antidepressants like Zoloft and any (other) anti-androgenic substances and drugs.

Take care and good luck!

1 Like
#3

Finally I had contact with a consultant Endocrinologist doctor from Sweden, Gothenburg (Thord Rosén) a year ago and he’s been the one helping me with some contacts and making tests that were impossible to get by the Swedish welfare state.

This is off topic but I want all to know that you should never believe when people talking about the swedish model and how fantastic the health system is. Specially Swedes abroad always trying to establish this view because the propaganda works I mysterious ways. + Swedes claims that they are not nationalistic but if you ever utter a bad word about our system I’m going to assure you they will get angry and kill you with silence. (That’s the way we do it)

We actually have alot of private healthcare which the upper middle class using because of the horrendous broke system. It takes 1.5 years to get an look on my gut bacterial even tho my Endocrinologist provided them with all information. The swedish law has a limited of the most 3 month before getting treated but they just can’t coup.

So I am paying taxes and still have to pay alot for private as well. Hallelujah!

3 Likes
#4

Yes, my Endocrinologist teached me that, unfortunately I didn’t met him before this happened and it’s irritating as hell but what to do. Now I learned that.

And I definitely going to report as soon as I leaving the mental hospital were I am since yesterday

#5

What else? Cannabis have helped me some and also maybe didn’t help me. It’s hard to understand, I had occasional morning wood and when used cannabis, it disappeared, then after some heavy cannabis use it suddenly worked good for like a week before I quited with cannabis, and again my booner was gone I can’t understand this

1 Like
#6

Other than that, alcohol doenst work so much any more. I don’t have feeling for it, I’m not getting drunk like I use to be and I need alot of cannabis to be stoned as well. Another interesting fact is that I always, since this shit started, had to rest/sleep on my stomach down with my legs crossed because it felt most satisfied, but since like 3 weeks I felt a relaxtion and I finally am able to sleep like a sea star again (my normal sleep position before PFS)

#7

My blurry vision and brain fog hav changed
to the better and even tho all seems to be fluctuate some things really seems to improve some times. And isn’t it interesting that my numbd small Johnson which barely worked for years suddenly, a couple of days, worked almost like the old days. (Maybe a tiny bit smaller but who the fuck cares nowadays)

1 Like
#8

I’ve been extremely skinny, and then fat and the skinny again and now fat stores in hips and stomach but extremely boney on my elbow, upper arms and shoulders

My face looks alot different with some lost of chin, alot of loose skin on my neck and throat (specially on my neck, It feels almost like you can carry me holding my skin on my neck, like a cat)

#9

Hi NOSOUPFORYOU,

So sorry to read about your symptoms you have had quite a difficult time.

You mention eating Zoloft 2 times and getting tremors after PFS. Are you still sensitive to medication and supplements or has that improved?

Maybe try increasing blood flow to your brain to help with the brain fog. You don’t really want brain fog long term. There’s lot of articles online to help you with this.

#10

Hi thanks for the condolences, and of course right back at you! We all been thru hell or still in one way or another.

I’m sorry but their is way to work with the brain fog? Do you have any homepage to recommend? Actually, the brain fog is alot better (unfortunately not in the morning)

You mean if I should try medication again? Trust me, I never touch that shit again, this vibrating tremors isn’t like the ordinary ones you see old men having. This is way faster almost like vibrating. And it feels almost like my whole body vibrates. Example, if you holding a lace you going to notice the small vibration in the lace in exactly the same manner like the rest of my body

#11

Here you go my friend https://www.optimallivingdynamics.com/blog/21-proven-ways-to-increase-brain-blood-flow lots of drug free options there.

2 Likes
#12

Interesting report:

The Endocrinologist I’ve been visiting (and I believe he is very well respected in Scandinavia) believes that PFS suffers from a brain damage earlier in life, often concussion . Also if you had depression or alot of anxiety growing up, which underdevelop some parts in brain (like when you see pictures of brain scan with normal people vs depressed people) you also are more likely to develop PFS

Me? I Had both :no_mouth:

Obviously I don’t have the papers now but I believe the article are in the science forum here in propeciahelp. He knew the name of the authors of the articles and told me they were very respected in the field.

I’m going to to publish the one as soon as possible.

#13

Hello Nosouoforyou! Im also a swede who have been hit by this terrible condition. Send me a pm if you want to discuss our situation in swedish. For me it woulde be helpful to talk to another swede. BR Patrik

2 Likes
#14

Absolutely! Jag skriver direkt! :slightly_smiling_face:

#15

@patrik82 @NOSOUPFORYOU (great reference by the way),

I don’t wish to tell you what to talk about, but could you maybe make a topic called “Swedish PFS discussion” or something like that and have the conversation in public? It might be helpful for other Swedes who might be passing by. :slight_smile:

2 Likes
#16

I have a question about a heart rate In my stomach which is extremely annoying! I’ve been a long time lurker but never found anyone describing this issue:

I always have a heart pulsation in my stomach which is very irritating and often disturb my breathing. It’s almost like an small small alien poking to get out. I’ve read it could be a hernia on the aorta in the stomach, but this only for older, very obiesed people.

Have anybody had similar probleml?
It’s getting worst when I’m stressed and specially when I’m laying down on my back but you always noticing it when I standing up. This only stopped temporary when I was on Zoloft.

1 Like
#17

Thanks, Seinfeld never getting old :blush:

That is actually a really good idea. Mostly because I can’t find anyone writing about this in swedish or any swedish homepage or swedish doctors etc.

2 Likes
#18

Finally about my Endocrinologist:
He’s very positive about the Baylor study and told me the guys working with the research are top guys as well! He believes there will be a cure because the human knowledge and science is on a rampage right now, He compared with M.S and how fast the development has been for the last 6 years.

Even if it’s only words at least it’s something to hold on to

7 Likes
#19

Even if it’s just words, I prefer optimism to pessimism. :slight_smile:

4 Likes
#20

My Dr mark Gordon in Los angels said the same to me…

I feel for you especially with the physical effects read my blog here I have them to they never improve…

1 Like