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Post Finasteride Syndrome?

Posted , 9 users are following.

R33683
R33683

Ok.  Around 2009 at age 43, I was prescribed Finasteride for BPH.  I was on it approximately 9 months and saw no improvement so I stopped.  Prior to that, I had a healthy sex drive.  Maybe too healthy!  Shortly after, I experienced a gradual loss of libido, sensation, insomnia, and ridiculous anxiety.  All symptoms are still ongoing today.  Obviously I'm not sure if Post Finasteride Syndrome caused my problems.  I'm not the lawsuit type and I never heard of it until recently.  I also had a stressful job which I recently retired from.  I know stress can hit you in a lot of ways, but I find it odd that I had no anxiety or sexual issues for the first 20 years in that career field.  The symptoms only began after the Finasteride was prescribed.  Maybe it's a coincidence.  I don't know.  I also have High Blood pressure which is well controlled with Lisinopril.  (Stress test looked good as did ultrasound doppler test I had done.)  That (HTN/Lisinopril) was also prescribed around the same time as the Finasteride was.  I'm not blaming Finasteride on my HTN at all.  In fact, I was wondering if it might be the Lisinopril that was causing some of these issues.  Any thoughts on that would be highly appreciated too.  When I brought this (PFS) up to my urologist six months ago, he basically said I was crazy and not to read about medical disorders on the internet.  I saw a second and third urologist and they said the same thing and insisted that Finasteride causes no sexual side effects at all.  When I showed the last uro the Finasteride info that came with my prescription (He tried to prescribe it again!) and the first side effect listed was "Long term sexual dysfunction even after the medication is discontinued",  he got angry and said "Well in 22 years I've never seen a problem with it!"  The second side effect was anxiety.  In fact, I had almost all of the various side effects listed.  Around this same time period in 2009-2010, I started Ambien and occasionally Xanax for the anxiety and relentless insomnia.  It was killing me.  This was after the Finasteride ordeal.  I know that these medications can also cause sexual dysfunction and I've experimented with stopping both for several months at a time.  No improvement in anything.  Maybe it takes longer, but I simply can't sleep more than an hour at a time without one or the other.  When I read about PFS being a real thing, I tried to get my medical files from 2009/2010 but the urologists and my general physician purged my files.  My pharmacy also purged my files and only has records from the last 5 years so I can't prove this timeline.  I saw an endocrinologist recently and he never heard of Post Finasteride Syndrome either.  He at least seemed open to the possibility, but had no idea  what to do or test for.  He did run a bunch of routine tests and I'll be seeing him next week for the results.  Now that I'm retired, (and in a new relationship) I'm starting to realize how devastating this all is.  Until recently, I guess I just didn't have time to think very much about it.  Anyway, sorry this was so long.  I'm starting to lose hope and I don't like being that way.  So, is there any tests that can be done to test for PFS?  Does anyone have a link to an article that explains PFS and possible tests for diagnosis that is more or less a Cliff Notes version?  Everything I've found goes on for pages and pages and I can't realistically expect my endocrinologist or any other doctor to read something that long when they're skeptical to begin with.  My mind is blown that no doctor I've talked to is the least bit aware of this.  Equally shocking is that none of them have heard of Rezum, prostatic artery ebolisation, or anything less radical or more cutting edge than TURP or Green Light Laser for BPH.  If I ever do get my libido back, I don't want RE.  A recent cystoscopy showed my median lobe is pretty enlarged.  I've read that Rezum is more suitable in that case, but have also read that some radiologists have had great success with PAE in cases with enlarged median lobe by going through the radial artery.  This is all so exhausting and overwhelming.  If anyone has any input at all or knows of any doctors, radiologists, endos or anyone else that could possibly be of help in the state of California, I'd really appreciate it.  I'm at the point where I'm considering paying out of pocket for better medical care if I have to.  Thanks for your time.

0 likes, 12 replies

12 Replies

  • R33683
    R33683

    Posted

    Sorry.  Forgot to mention that testosterone levels are normal so Low T isn't the problem.

  • graham90475
    graham90475 R33683

    Posted

    Hi I can assure you Finesteride causes a loss of sex drive. I have changed rapidly in the last 3 months, so much I have stopped taking it today. I havnt waited for any directive of my doc, I know how it's affected me and I've stopped. A doc has prescribed Avodart to me as a replacement today it's the same type of drug so should I start, I really don't know. Finesteride has pretty severe side effects in my case, how people can take this type of drug for hair loss is beyond me!! If you want a pair of man boobs yes it will work!

    • derek76
      derek76 graham90475

      Posted

      The man boobs go after stopping it. My wife was threatening to buy me a training bra. I have had other meds with the same effect..
    • TKM
      TKM graham90475

      Posted

      Graham,   Avodart is a 5a-reductase inhibitor, the same kind of drug as Finesteride,  It has the same side effects as Finesteride .   I was prescribed Avodart, and took it for 1 year,  2011 to 2012, until I realized it was lowering my libido and causing ED.  I stopped it about six years ago.  During the time I took Avodart my PSA dropped from 3.6 to 1.5 which was good.  However my sexual function dropped by about the same amount. My PSA has slowly risen back since then to about 2.8. It seems like the sexual function has followed, but that is very slow, about six years now.

      It is better to self catherterize or take your chances with one of the procedures, unless you don't care about sexual function, your at advanced age, had all the children you will have, or some other reason.

      Thomas

    • graham90475
      graham90475 TKM

      Posted

      Hi Thomas. When you came off the reductase, did you stop taking any drugs for your problem? I stopped the Finesteride yesterday after I told the doc. problems I was experiencing and he told me to try the Avodart. As you explain, it seems to do a similar job to the Finesteride and predict I will continue with my present problem. Did things go down the hill fast after you finished the Avodart?  I don't know if I should start these now or wait. I don't want to run into acute retention problems suddenly. All the best Graham.

    • TKM
      TKM graham90475

      Posted

      Graham,  I did not notice improvement due to Avodart.  However from what I understand  improverment comes very slowly, like 6 months to a year.  At that time my symptoms were not as bad so I did not notice any improvement due to Avodart.  I stopped Avodart after 1 year, due to its negative sexual side effects.

      I did notice improvement due to Flomax (Tamsulosin) so I kept that up, and several years later went to double dose (0.8 mg).  About 4 months ago I started CIC (Self cath) and slowly stopped Flomax over a 3 week period.  I can now naturaly void only small amounts like 30 ml to 60 ml before cathing.

      I had been thinking I would try Urolift since they have a new procedure for  obstructive median lobe,  but last week I found out that the clips may prevent you from having an MRI guided biopsy, so if you need a biopsy you would be back to the old 12 needle method, and someone mentioned that a needle may puncture a Urolift suture with a direct hit. Someone on this site also said that Dr Karamanian in Houston will not perform FLA on a patient who has Urolift, because Urolift is "occlusive".  Which I think means it blocks the view with an MRI ?  I need to find out if these things about Urolift are true, before I would proceed on that route.  That leaves Rezum as the next possiblity, I have already tried PAE, which did not work for me, possibly due to my enlarged median lobe, however I understand there is a new PAE procedure for enlarged median lobe that plugs the artery to the ML.  Does anyone know a doctor who performs it ?

      Good luck on your journey

      Thomas

       

  • glenn77
    glenn77 R33683

    Posted

    I would make sure your urologist is no older than 45, as some of the older doctors don't want to learn anything new.  The old saying, "when the only tool you have is a hammer, everything looks like a nail" surely holds in urology.  Since you have median lobe growth, you might want to look at FLA as an option.

    • R33683
      R33683 glenn77

      Posted

      Thanks.  It sucks because every urologist under my medical plan is in their late 60's give or take.  This is so frustrating.  Doctor's sure don't like it when you try to tell them about something they're uninformed about.

  • kenneth1955
    kenneth1955 R33683

    Posted

    Buddy I am so sorry that this is going on.  So your around 60  Your body will not act like it was years ago.  You may need a booster.  When we are young our body are raring to go.  Up on a dime when we get older it take us longer and sometime we need help from a little blue pill.   When was the last time you had your Testosterone check  That may be low.  Rezum is pretty good for Median lobe some me had had it done.  2 shots on each side and one in the median lobe.  But there is a 5 to 10 % chance of retro ejaculation.  There is also Urolift they are doing median lobes now.  They would just clip it to the side.  No side effects.  On Finasteride it does say that it will decrease your libido and sex drive.  Even after taking it.  Some doctor do not care about your sex drive they are just looking to help you pee.  They feel the the side effects are worth it if you can pee.  I hope things get better for you  Take care  ken     
    • R33683
      R33683 kenneth1955

      Posted

      I’m only 53 now.  These symptoms started at 43 in conjunction with The Finasteride.  Again, not sure if it’s a coincidence.  It is suspicious though because I’ve had nearly every test done imaginable and everything checks out normal.  Testosterone, neck, spine, cardiac work up, Mental Health eval, everything.  I exercise regularly and am not overweight etc.  It doesn’t make sense.  It’s like I went from hero to zero in the span of 6 months.  Well, hero may be an overstatement, but you know what I mean.  The way and speed in which this all happened is not normal.  
    • R33683
      R33683 kenneth1955

      Posted

      I wish the doctor’s would warn patients about potential sides and let them decide if it’s worth the risk or not.  Some still deny the side effects even exist even though the manufacturers have now been mandated to list them on the medication labels.  That’s crazy.
    • kenneth1955
      kenneth1955 R33683

      Posted

      Yes I don't think that this is normal.  If you had all the test and all are ok you should not be having a problem.  Stress can do a number on you to.  I look up the 2 pills you are taking they have a lot of side effect but nothing to do with sexual functions At 53 you should be up and running.  Like I said before you may need the little blue pill   Good Luck  Ken   

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