Hello All,
I’ve been reading these message boards for a long time, and decided to share my story.
I was on Propecia for about 3 years. I started in 2005 right around my 23rd birthday. When I noticed I was losing my hair, I remember going to my primary care physician and having him tell me I was crazy for wanting to go on a drug that impacts hormones when I was only 23 years old. He refused to give me a prescription. So probably like most other 23 year olds losing their hair would do, I found a doctor that would write me a prescription. Big mistake.
Over the course of 3 years, I took Propecia relatively side effect free. My libido was slightly reduced, and I didn’t wake up with a morning erection as often, but nothing really that made me think twice about taking the drug.
In 2008 I was sent to Japan for two weeks on business. I guess in my haste I neglected to pack my Propecia. So for two weeks, I went off the drug. I didn’t really think much of it…just that I’d start taking it again as soon as I returned home.
When I did start taking it again after the 2 week hiatus, I noticed some immediate changes. My libido dropped to practically nothing. I could still get an erection if I forced myself to but nothing like before. My face also broke out in absolutely horrible acne. And considering I never had acne as a teenager going through puberty, this was a huge shock. But for whatever reason, I didn’t think much of it. I figured my libido would go back to normal and the acne would disappear after a few weeks back on the drug. Wrong.
About a month later I noticed wrinkles and fine lines starting to appear around my eyes, my mouth and on my cheeks. I also started noticing wrinkles on my penis. This pretty much happened over night. So, at the age of 26 I was beginning to look like I was 40. I thought the side effects would stop there, but unfortunately not. A couple of weeks after that I woke up to what felt like razor blades in my eyes. I suddenly had dry eye syndrome. This all occurred between June and August 2008.
At that point I knew I had some type of horrible reaction to going back on the Propecia after the short hiatus. I went to see my doctor, the same one who 3 years before told me I’d be crazy for going on Propecia. He was not surprised that Propecia could cause these types of side effects.
I started seeing endocrinologists, dermatologists, and ophthalmologists. Surprisingly, none doubted my story. When I took my first blood test in October 2008, virtually everything was about half the low end of average: Testosterone, Free Testosterone, DHT, DHEA…you name it, I was deficient in it. The eye doctor I went to see had heard that Propecia could cause eye problems, but I was the first case he had seen first hand. He suggested inserting some tubes or something to relieve the dryness, but I really didn’t wanted to wait until all my levels were normal to see if the side effects went away. The dermatologists I saw both thought the wrinkling of my skin was being caused by dehydrated skin. But obviously having never seen this before, they could not be certain.
I took my second blood test in March 2009. No improvement anywhere. My endocrinologist kept reassuring me everything should go back to normal, and many times bad reactions to drugs just take a significant period of time to get over. I was not convinced. At that point I was already kind of sick of dealing with everything and began to put off seeing my doctors. The libido issues, skin wrinkling and eye problems were all still present. The only thing that cleared up was the acne, which left some nice scars behind as a parting gift.
I didn’t take another blood test until August 2009. At that point I had started to feel better. I had started to wake up with morning erections again. My ejaculate volume had increased. My libido had mostly returned. However, my eye and skin problems persisted.
I went to see my endo in September and he had good news. The blood test showed EVERYTHING had returned to normal. So after a full year of waiting, things seemed to be headed in the right direction, but I was still concerned that everything had not returned to normal. He told me sometimes side effects take many months to clear up after hormones return to normal. This gave me a little hope.
Fast forward a few months. Around Thanksgiving time, I noticed my eyes were starting to feel better. I was no longer needing to use eye drops as much. I went from having to use drops once an hour to 3 or 4 times a day. A huge improvement. My skin was still the same.
Today, I’d say my libido is 90% recovered. It’s still not like it was before I started the Propecia, but better than any time I was on the Propecia. My eyes are probably 80% recovered. I can sometimes go days without needing drops, but occasionally I have a bad day and the dryness returns, but to a much lesser degree than before.
The only thing that doesn’t seem to be improving is my skin. I’m holding out hope that it’s just taking longer to recover, but have a bad feeling the effects on my skin may be permanent. The most frustrating part is some days I’ll wake up and look in the mirror and I’ll think things look a little better. But then a day or two later I’ll wake up and it’ll look like my skin has worsened. I start to wonder if the improvements I saw were all my imagination. The battle continues 18 months after quitting Propecia.