4 years on Propecia- my story

Member Stories
#1

Hey whats up everyone. Ive found this site about 4 months ago when I was searching for the cause of all my symptoms. Ive never posted but just used the info everyone was providing. First I would like to thank whoever created the forum as Im sure has helped many propecia sufferers. Heres my story in a short version…

Before Propecia- Happy, motivated, going out drinking with friends, Talking to mutliple girls, horny as hell etc. Loving life.

Back when I was 22 years old I got hit with sudden fatigue and hair loss. Im very vain and care about my looks just like everyone here and researched the hell out of hair loss. This all lead me to Propecia. Took propecia for a year before I got diagnosed with hypothyroidism. Hmmmmm 23 year old male with a thyroid problem? Very rare. Maybe propecia cause it? As of 4 months ago I can see it happening. Anyways I had the fatigue which they thought was depression and after 4 different anti depressants it didnt help. I knew I wasnt depressed at that time just was really tired. The tiredness seemed to worsen after I ate. So even though I was tired I was able to think, have fun, bang chicks etc. Well as time went on things got worse. I began to wonder what the heck is happening. I started to get emotionally blunt, have no feelings, slurred speech, scrampled words, not caring about sex, no good feelings when busting, brain fog, GI problems, muscle twitches, aches, chest pain etc. I had just about every symptom out there. The thing was the symptoms usually come and go. I always had the symptoms they just werent all daily. Mixe and matched really. So I was determined to figure out what was wrong. I went from doctor to doctor specialist to specialist. I was at the doctors at least once a month for the last 4 years. They checked diabetes, sleep study, adrenals, candida, anemia, cancer, vitamin deficeincies, brain scans, mris, ekgs on heart, colonoscopy, exrays on abdomen, allergies, infectional diseases, lyme disease, celiac disease, hypoglycemia, lupus, sinus scans, hypoparathyroidism EVERYTHING! Blood test were all fine. I had multiple er visit from not being able to breathe to heart racing etc. Probably was anxiety but I was bugging out and scared. The thing is they tried to treat these symptoms with meds which seem to make things worse.

Last year I got real sick from who knows what. I was so ill I couldnt work. It was mostly stomach problems but was also anxiety. I was playing around with thyroid doses trying to get better and hopefully fix the problem but probably sent my body in a whirl. Anyways I went to a allergy doctor cause i have post nasal drip and put me on some anti histamine which bugged me out. Also gave me achiphex which he thought was GERD. Well things got worse. They thought I had a bug and gave me steroids and shots with nausea pills. I stopped propecia during this month cause I was scared I was haveing interactions and wanted to get off all these drugs. This probably made things worse. I was in a constant state of anxiety and so sick I couldnt eat. After several hospital visits and being bed bound I finally was able top get back on my feet. I stopped all drugs and was on lexapro and a acid reflux med which was at the time of me starting to eat and get back to work again. Even though I was able to go back to work I was still not right. I was taking lexapro, back on propecia, synthroid for thyroid, and acid reflux med. I then went on a gluten free diet which seem to help some, I gave it 6 months to see if I would go back to normal. Well symptoms persisted. i stil was not interested in sex, going out, being myself, thinking clearly, depression etc. I then decided to get rid of the lexapro and see if that helped. Well I got off that and was only on synthroid, propecia, and ocassiaonally the reflux med when needed. So that was 6 months ago (April 2008). I did start to get som eemotions back since anti depressant take them away… but Iwas still not right. I was having symptoms coming and going. Brain fog, not interest in sex or anything. I continued to give it time and was going out drinking with my friends hoping it would all fix. Well a new symptom popped up. I wasnt able to handle alchohol. I would have breathing problems chest pain when i started to drink. Where the hell did this come from I thought? On top of that I would have days where I could drink and not get drunk. I then started to think why is everyone normal and im not? I was never like this. I have all these problems and doctors say im fine. When I get home Im researching propecia. And then BAM. I see propeciahelp.com I start ready and im like OMG these people have symptoms that I have. Fuck this im getting off. The first week I stopped great things started to happen. My mind got clear, i was horny, food didnt seem to bother me, I can drink again without problems. I was like hell yeah im starting to improve. Well its been 4 months off of propecia. I have no GI symptoms really, breathing is fine, im mentally way better than before but not 100%. The thing is its been a rollercoaster. My erections got weaker and now are strong again. I had water ejaculate and now its seems better. I swore my dick shrunk but now seems bigger. My muscle strength is way better, I cant believe how weak I was. The only things I have now is brain fog, anxiety that will come for 5-10 days and be gone for a week then come back. Same with depression, and same iwth fatigue. I keep forgetting to add sex drive to the list and that is gone right now. When will things level out for good? 6 months? a year?

Thats my story, its hard to jam 4 years with multiple things and symptoms happening. So sorry if it sounds scattered.

#2

Just want to let everyone know that its been exactly 4 months or so off Propecia. Last night I was able to think clear and the brain fog lifted. Felt normal for once again. Its been a rollercoaster coming and going. Today I am still able to think clearly and focus. Will continue this thread for my recovery.

I take:

Synthroid to balance my thyroid
Multi vitamin every day
And just added fish oil everyday
Run at least a mile a day when I get off work. <— Helps out alot.

#3

Well, I was feeling pretty much normal untill wednesday of this week. I know have a constant state of anxiety which Ive had before. I think it usually last 4-5 days, sucks. I get like head pressure like a band around my head and feel kinda like a drunk dizziness. Had to pop a benzo to get rid of the feeling… even tho the benzo makes me feel tired, it does works. Hopefully this finally stops and lets me feel normal again.

#4

Now Im getting hit with depression today and a little bit of brain fog. Hopefully it passes soon. One thing I have notice is the depression was coming every other week and now looks like its every 2 weeks. Hopefully it eventually passes, have no reason to feel like this.

#5

Hey mate thanks for this. Keep pushing. I have a feeling our stories are going to be closely related.

I totally know what you mean by “I have no reason to feel like this”.

#6

i know how you feel.,
It was up and down for a year like that.

good for 2 days bad for 2 good for 2 bad for 3 and so on and so on.
i DID IT for over a year i am off propecia a year and a half and still have minor ups and downs but feel much better.

I am on no medication for over a year.

#7

razor,

the ups and downs like im getting finally minized for you? Ive been off for 5 months now.

#8

Just wanted to update everyone on how I feel. My brain fog has been gone for a good 2-3 weeks straight which is awesome for me functioning at work. The anxiety/ depression has come and gone which is like 3-4 days then disappears but havent had and down days for 2 weeks I think. Fatigue is barely hanging around and doesnt bother me too too much. Overall I can function much better than I have in the past and mental clarity is one of the main things that has helped. Ill keep you posted with anything new.

#9

Update on my progress.

Fatigue- still lingering around

Depression- seems to be low grade and comes in goes with irritability

Anxiety- every now and again

Memory- seems to be fine now

Brain fog- I will maybe get it for a 5 hour time frame in one month.

Emotional- Still feel kinda numb like theres a wall in my brain that wont allow me to be me and act normal. I hate this symptom real bad. Its funny how I know that Im not acting myself but unable to be myself. I think it has to do with mental clarity and a relaxed mind. Hopefully it passes as I do get times where Im 100% which dont last long.

Sex drive - got it back. horny as shit

Erections- no problem all good

Slurred Speech - gone

#10

I just came off and I am concerned now with how long it will take to get rid of my side effects (mostly lightheaded and anxiety). I am glad you are feeling better friend.

#11

Well everyone is of course different which makes it hard to tell. All I can say is time will tell. The lightheadedness and anxiety should come and go for a month-8 months to be honest. But what you might notice is it being spread out… for example. evey other day with anxiety and lightheadedness. Then 2 months goes by and its every other week. Then two weeks then months. Im just giving an example it could dissapear sooner… I cant give a 100% answer. However I would just take one day at a time and exercise, eat healthy as possible, and take a multi vitamin. Get some blood work to make sure all else is fine so you know Propecia didnt do to much damage. Once you get more of the Propecia out of your system you should start to slowly improve.

#12

Well I guesss it sucks that these symptoms will take a while to go away (hopefully not) but I feel good to finally know what was causing my anxiety and my discoloration on my stomach. I was worried that I had cancer for a while and the mental stress was starting to get to me. Did you ever get really bad anxiety or was it just mild?

#13

Did I get it bad? lol… oh yeah. You just got to tell yourself it will pass and this is just apart of propecia side effects from coming off. I had it mild and severe.

#14

When your anxiety was bad, was it when you came off or while you were still taking the pill?

#15

Had anxiety on and off. It seem to be a low constant grade on propecia but then went through waves of mild and severe anxiety when I came off. From what I recall… 2-3 months off it was more mild then around 5-6 months I had some severe anxiety. After that it seemed to just stop. Its faded and I really dont get anxiety that much anymore.

#16

you are right, everyone is different and will have different reactions. I noticed you had lots of side effects that I was lucky not to have. I had the mild anxiety for the past year, which became a concern trying to figure out what was wrong with me. I think what helped me was that i was always athletic and I played lots of soccer and that gave me a mental type of strengh knowing I was healthy. I feel relieved that now I now what was causing it. I did research and I could never find any corralation between my symptoms and propecia. It wasent until I search “liver levels and propecia” that I received the shock of my life. All the symptoms I had everybody discussing in this forum had.
I am glad you are feeling better because unfortunately you had lots of side effects.

#17

Yep the thing is with me is I had a thyroid problem at the age of 22. What comes with a thyroid problem is hair loss. Sooooo besides trying to get in balance with thyroid which can be hard and has many symptoms. I started taking propecia to stop the hair loss. To me I just put gas on the fire but didnt know propecia would make me feel as bad as I did. I am also very athletic like you and played soccer, football, basketball, and baseball. Im at the gym alot to stay as ripped as possible. I guess thats just from me being very vein with my appearance. However by me having motivation to stay in shape with exercise, im sure it contributes to me getting better and dealing with the symptoms. So definitley run, hit the gym and eat natural if you can to help feed your body what it needs.

#18

Great for you. I lifted weights also 6 days a week for the past 5 years without stopping up until a year ago. Once I started getting mild anxiety I was scared to hit the gym and pass out in there. The thing was that I had no idea what it was that was causing me to feel like that. I surely thought it was some disease. Running and playing soccer was never a problem up until a week ago that I began to feel extremely light headed constant. So now that I now that its just this stupid pill causing it, then I feel like I can start my exercise routine again and just wait for the side effects to clear my body.

#19

Yep and dont freak out if you notice anxiety increase while your working out or right after. I had that happen a couple times but knew it was propecia side effects from coming off. Kinda weird benching and have severe anxiety to almost a panic attack while your breaking a sweat. That only happe ned two times and eventually passed since I havent had that happen in months. Good luck man and stay positive. Hopefully I get back to 100% normal and I will have a good track history for people to relate to my situation.

#20

Thats funny that you said that. Just the other day I felt really lighthead after taking a hard run. I have never really felt like that running, I only felt like that while working out. And usually I would never felt anxiety after working out, I would only feel it while I was inside the gym. Really good to know what was causing it and knowing it will pass on.