Problem with hands/wrists

Member Stories
#1

  1. Where are you from (country)?
    Germany

  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?)
    Link from a hairloss forum

  3. What is your current age, height, weight?
    29/177cm/65kg

  4. Do you excercise regularly? If so, what type of excercise?
    I do sports like 3 times a week (soccer, running, gym)

  5. What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)?
    no special diet

  6. Why did you take Finasteride (hair loss, BPH, other)?
    hair loss

  7. For how long did you take Finasteride (weeks/months/years)?
    1 month

  8. How old were you, and WHEN (date) did you start Finasteride?
    28, start ca. 15.7.12

  9. How old were you when you quit, and WHEN (date) did you quit?
    28, end ca. 15.8.12

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

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

  12. What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?
    0.5mg/day

  13. How long into your use of Finasteride did you notice the onset of side effects?
    Ca. 2-3 weeks

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

Put an X beside all that apply:

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 to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility

Mental
[ ] Emotional Blunting / Emotionally Flat
[ ] Difficulty Focusing / Concentrating
[ ] Confusion
[x] Memory Loss / Forgetfullness
[x] 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
[x] Muscle Weakness
[x] 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] Increased hair loss
[ ] Frequent urination
[ ] Lowered body temperature

[ ] Other (please explain)

  1. What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?

  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)?

  1. Anything not listed in the above questions you’d like to share about your experience with Finasteride?
    Other persistent side effects: incereased sweating (deodorant doesnt work anymore), sweat smells different (more “female” like the sweat of my mum), itchy scalp

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

I took a Propecia Generic for 1 month in July last year. I took “just” 0.5mg as I had read about the potential dangers of the drug. Within 2-3 weeks my semen got watery and after 3-4 weeks my scalp started to itch and burn and I started loosing a lot of hair - that was why I quit the drug.
There are some persisting side effects, but my main problem is muscle weakness and joint pain in my forearms/hands, which started 4 months after I had quit the drug. I first recognized a strange and numb feeling in the fingers of my right hand, then pain in the joint of the wrist and a decrease of strength (e.g. when opening bottles). I also think my forearms look thinner now though I am not sure about that. I went to a doctor to check for the “Ulnaris Syndrom” (a problem with the nerves) but he couldnt find anything. The problem has now been lasting for 6 months and also started in the left hand. I noticed I can lift less weigth in the gym than one year ago, too.
How likely is it to recover from those symptoms like muscle weakness/joint pain? Might there be another underlying reason than finasteride, as I developed these problems 4 months after quitting the drug?
The feeling in my fingers is really strange, hard to describe I have never experienced something like that. I have the continiuous feeling/need to spread my fingers…

Other side effects were dandruff, oily and itchy scalp, increased hairloss, small pimples in my face, improvement of the acne on my back, increased sweating and change of sweat odor. Still persisting: itchy scalp + hairloss, increased sweating and change of sweat odor

Input regarding the problem with my hands/arms would be very welcome.

Cheers,
Toni

#2

Welcome to the forum. So you hand problem is worse on the left side, is it only the hand/forearm or does it begin in the shoulder or possibly neck?

#3

Hello Martin,

it started all with my right hand, on one evening I had been playing dart and when I came home I suddenly could not move the fingers anymore. I went to bed and the next morning everything was ok again. However 2 weeks later a numb feeling came back, I lost strength in the hand and were not able to open certain bottles, I just dont have a fast grip anymore. I frequently have to ask people to open bottles for me. Several weeks later a dull pain in the wrist began, too.
Now all of this has also started in my left hand, though not that serious yet.
I feel it just in my hands and forearms not in other parts of my body. Nonetheless I have decreased power in the gym even when I do not need the force of my hands.

I was thinking it could be a common problem caused by playing dart that single day (I usually dont play dart) like the “Uranus syndrome” or “typist’s neuritis”, and not caused by finasteride. However in that case I wonder why it also has started in my left hand (I am right-handed)?
Maybe it is a common disease which was triggered by finasteride, as I also have other persisting side effects.

#4

My forearms, wrists, hands, fingers feel very weak or fatigued as well and when I sleep I will get a twitch randomly in either hand. It kinda feels like a wave of weakness flowing down from my forearms through my fingers. I am constantly paranoid about it and looking at my hands. Has this improved for you? I would really like to know.

Thank you so much.

#5

Hello Toni83,

Can you please give us an update? Thanks big time!

Winston

#6

My theory is that low neurosteroids predisposes people to radiculopathy/peripheral neuropathy. The nerve root gets compressed slightly coming through the spine and the neuroprotective effects of allopregnanolone aren’t there to prevent dysfunction, weakness, twitching, etc.

Problems with the arms could come from nerves in the neck. Problems with the legs could stem from nerves in the lumbar spine.

Peripheral neuropathy is a cause of muscle wasting btw.

I find it interesting that both Winston and the OP have problems only with their arms. I would be surprised if we could find examples of people who have problems with their legs, but no sexual sides or CPPS.

#7

So I am almost 2 years into PFS. While I still have symptoms, I have to say I live a normal life so far. What I mean by that is even though I have all these symptoms, they do not stop my body’s normal performance. I live normal while these things are happening to me. For the most part my current symptoms are muscles randomly twitch ALL OVER my body, my eyes have a lot of floaters and my vision is not great. Without my glasses I have slight double vision. If I flex my biceps or calves really hard, they will twitch for a min. I went to a neurologist about 6 months ago in pure fear that I am in the early stages of ALS or Parkinsons. I also went to a Neurological Ophthalmologist for my eyes. The Neurologist physically examined me and said I am totally fine. He said if I continue to rack my brain over this, he could put me on anti-depressants. I do not want medication and turned down the anti-depressants. The Neurological Ophthalmologist ran me through extensive tests, determined that I am fine, and said get used to the floaters. I told both Doctors about Propecia and both said it has nothing to do with what I am going through. So since the doctors told me those things, I decided to ignore all the symptoms and live my life. Well that approach works great. I notice other people here have had my issues for up to 6 years so far. Well as long as the symptoms are what they are and do not progress into something deadly I can deal with it. Seeing other people here that are going through the same thing and not finding anyone who’s symptoms evolved into something deadly, my assumption is that that I’m fine. PFS is what it is, but does not seem to progress into deadly diseases. That’s the good part of my PFS so far.

The bad part, even though I live my life normal does not mean that PFS is never in the back of my mind. Every now and then all the twitches get my mind back to thinking maybe those doctors were wrong and I am dying. How could it be that I’m fine while all these things are happening? However I just push through and nothing seems to get worse. My research leads me to believe that ALS and Parkinsons would have progressed into something majorly wrong with me by now. That is what keeps me from going nuts. If I go to a gym or work out my muscles work fine. I am not weak. Even though sometimes I feel like I am weak, I do not perform that way. Last week I was throwing deep passes to my son with a football without issue. I can run, jump, and play. I don’t drop things, I don’t fall over or stumble. Honestly, I just hope and pray these twitches go away some day. Of all the symptoms that’s the one that bothers my thoughts the most. I can say that when all this started my twitches were more violent and as time has gone on they are less violent. When this started my leg, lower back, arm, or shoulder would jerk suddenly as I tried to fall asleep. Currently that barely happens any more, and if it does it is only in my shoulder and is way way less violent. My wife is a Registered Nurse and has never observed any issue with me and she is fully aware of of my situation. She says people twitch, oh well. I even watch her and my son sometimes when they sleep and yes they do twitch too. Even my Dad said he has had twitches for over 20 years. He showed me his calf and yep it was twitching.

List of other symptoms I currently go through that are more minor:

I get a crazy itch sometimes on my nut sack.
Sometimes a part of my skin feels like it got wet, then goes away.
For a while my feet were buzzing on and off (as if a phone was on vibrate and laying on my foot.)
Sometimes when I sleep, my lungs will suddenly take a deep breath.
Some joint pain
Neck sometimes hurts.
Ringing in my ears that comes and goes.
After 2 years I’m starting to see some hair loss.
Sometimes I get a cramp in either foot that goes away. (My Dad has suffered sever foot and calf cramps all his life.)

All in all I am a very positive person. I love my life. This is an underlying struggle I go through and mostly ignore. I do wish I never took the drug, but as a kid I was devastated to start losing my hair so early and propecia worked big time on me for 14 years. I never had erectile dysfunction and still do not. After two miscarriages my Wife is currently pregnant and doing well with our second child.

This site gives me peace of mind from time to time and thank you so much for creating it. I see many people who sign up, state their situation, stick around for a month or so, then disappear. To me that’s a good sign that they too are dealing with issues that “are what they are” and do not turn deadly. That’s why they do not return. My hope is that people who read this will actually reply with anything they would like to say.

Thank you so much for your time,
Winston

1 Like
#8

I get similar to Winston and yourself. The twitches come and go. The buzzing runs like clockwork. You can virtually time it. Buzz on, two seconds, buzz off eight seconds … I get occasional stinging. It started on my left hand side, in my left foot and has now progressed to my whole body including my hands and wrists like you say. It never gets better, but some days are OK, some days worse. Sleep is better on the OK days. My arms go dead every so often and they get numb and tingle. I also get some joint pain and lactic acid type feeling around the joints. I’ve foudn that I still have my strength, even though like Winston says, I don’t feel like it, and constantly feel fatigued. I hope you find out what is causing it, or how to cure it.

#9

Thank you for the reply.

“My arms go dead every so often and they get numb and tingle.”

Does that mean while you are sleeping, and you wake up like that, then shake it off and all goes normal? Kinda like your arms fell asleep? Or do you mean you get paralyzed in the middle of the day in your arms?

I see you quit in 2003 after 6 years of usage. That is 13 years ago. Do the twitches get less over time? Have you been diagnosed with anything? Or like me, all doctors say I am fine?

This at least makes me very happy to know after 13 years off propecia, at least PFS has not progressed into something deadly for you. That after all is my biggest fear.

Thank you, look forward to your response.

Winston

#10

oops, I misread. I see you quit in 2013, not 2003. My apologies, but I still would big time appreciate a response to my questions.

Thank you

#11

I am going on 4 years, post-crash after one year of usage and a cold turkey cessation. Like both you and Winston, I went thru a severe neuropathy phase at about the 1-year post-crash period. This included muscle twitches all over, involuntary muscle movements, burning, tingling, etc. I saw a neuro. for a series of tests that included an EMG. Like you, I feared ALS, MS, Parkinson’s and any other similar condition I could find online. All my tests came back clean, but I was diagnosed with Benign (Cramp) Fasciculation Syndrome (BFS). There’s even an online forum @ aboutbfs.com where this is discussed by those with the condition. Over the 2 years since, only my twitches remain and even they are greatly diminished from when they began.

I too am trying to lead a normal life, albeit with ED, low to no libido and sleep issues. However, I’m staying more positive than not, I’m lifting more than I ever have and I’m doing ok at my job, which at first I was sure I would lose due to PFS. Don’t get me wrong, taking Fin is still my biggest regret.

So for what it’s worth, I was able to see some definite improvements in the areas you’re concerned about.

1 Like
#12

I can not tell you how much I appreciate your post. THANK YOU for bringing me some peace. If I could give you a big hug right now, I would. I am staying positive.

#13

My arms and legs have become weaker, and I feel less coordinated. I get twitches, fasciculations, and numbness as well and recently my grip strength has been suffering and my walking appears uncoordinated. I cannot walk as fast as usual. It feels like I’m disconnected from my legs. Very strange stuff. Honestly it sounds like ALS or MS, so I’m going to a Dr. to get an MRI and check it out. But I am hoping this is just* propecia, because if it is worse then we know that propecia can cause (in some people) very bad diseases. Just praying at the moment.

1 Like
#14

I have the same thing - weakness and pain in most joints: fingers, wrists, elbows, arms, hips, knees. It is most noticeable in the fingers and in the hips. It is serious enough to hinder walking and handling objects with my hands. It is as if the soft tissues of the joints (tendons and ligaments) have loosened up and any pressure on the joints injures them.

Other people I know with PFS also have this symptom. In high likelihood this is the result of PFS-related hormonal deficiency or insensitivity. In my case I have very low DHT levels, which may explain it.

#15

Do you have a problem with fine motor skill function?

#16

I haven’t noticed.

#17

Do any of you have issues with vocal weakness/hoarseness or problems projecting voice?

#18

I recently suffered a really dumb accident involving a household cleaner. I’ve lost some fine muscle control in my left hand/forearm and it’s always stiff and weak. Anyone gotten better with this issue?