My Experience with Dutasteride and Alpha Blockers
Posted , 11 users are following.
I have been on dutasteride and alfuzosin for about 7 months. The prevailing opinion on this blog is that these drugs are to be avoided at all costs. I am not here to dispute this but simply to post my experience with taking these drugs.
I had been having noticeable prostate problems for about 5 or 6 years. However, I thought my issue was mostly prostatitis because my uro kept telling me that my prostate was around 40 grams in size, which he was estimating from a DRE. Last year I started having more problems with urinating at night. My GP ordered a transabdominal ultrasound (TAUS) and the result was a prostate size of 140 grams!!? I hit the roof and had it out with my uro. I changed uros and had a transrectal ultrasound (TRUS), which is more accurate than a TAUS. The result was a prostate size of just under 100 grams. I decided to start taking dutasteride and an alpha blocker (originally tamsulosin but switched to alfuzosin). I chose dutasteride because it has an additional pathway for decreasing DHT compared to finasteride. I've sinced learned that the half life of dutasteride is 5 weeks whereas finasteride is around 7 hours or so.
About five years ago, I was urinating a lot, so I kept a detailed urination journal for about a month. I discovered that the problem was I was simply drinking too much fluid (over 3.5 liters per day). Over a year ago, I restarted keeping a detailed urination journal, which is now ongoing. After about 6 to 8 weeks on dutasteride/alfuzosin, I started noticing significant increases in the average amount of urine produced each time I went to the bathroom. As of right now (7 months), I am peeing about 40 to 50 mL more each time I urinate during the daytime, then last year at this time. The amounts that I am currently urinating are about the same if not better than five years ago. I have my own bladder scanner and my PVR is around 70 mL. I get up about 1 to 2 times each night.
About a month ago (the 6 month point), I convinced my uro to order another TAUS. Although the first TAUS appears to have overestimated the prostate size (140 versus 100 from TRUS), I reasoned that a subsequent TAUS should show a difference even if the absolute number wasn't correct. The latest TAUS result was 70 grams. I've also had sex hormone tests done (which I had to forcefully convince my GP to order). DHT is extremely low as is to be expected. Testosterone is above average for a man in his early sixties. So my numbers are all signficantly better and I no longer feel the pretty much constant perineum discomfort; only occassional now (but I still use my prostate cushions). As of now, I am quite happy with these results.
Now with regards to sexual side effects. Originally, I was on dutasteride and tamsulosin and I had a definite loss in libido and performance. The uro prescribed cialis, which helped somewhat. I have tinnitus and convinced my doctor that tamsulosin was making it worse. It was a little bit, but mostly I wanted to get off of tamsulosin. Many American doctors/uros only prescribe flomax; however, having lived in Europe, I always take note of what the Europeans are doing. So, I convinced my uro to switch me to alfuzosin, which is prescribed far more in Europe than in the states (not unsurprisingly, neither my GP nor uro had ever prescribed alfuzosin!). I've since learned that alfuzosin is far less likely to cause floppy iris syndrome when compared with tamsulosin. Sexual side effects were still there while taking dutasteride/alfuzosin, but much less than on dutasteride/tamsulosin. Just recently, however, I am having a further loss of libido and while I can "perform", sex has to occur very quickly after I have desire, otherwise, the interest is gone pretty quickly.
So, I've been formulating a plan to reduce taking the drugs. Here is the thought process:
- Dutasteride/finasteride typcially reduces the size of the prostate by about 25 to 30%. The vast majority of this reduction occurs in the first 6 to 12 months. After that, it seems to me that a man is taking these pills for maintenance (i.e. to keep the prostate from increasing in size again).
- Remember the half lives I mentioned above. It seems to me that, in the maintenance phase, I can start to take dutasteride only every other day or maybe even once a week and still maintain enough of a blood concentration of dutasteride because of the relatively long half life (5 weeks). This won't work with finasteride because of the very short half life.
- I mentioned my tentative plan to my uro, and surprisingly, he agrees with me. He has other patients that are only taking dutasteride every other day. However, he wants me to continue to take dutasteride every day for the full year because after the first 6 months my PSA didn't go down as much as hoped.
So the plan is that after a year on dutasteride, I will start reducing the number of times per week I take dutasteride. Since I am a data-driven person, I told my uro that on the future reduced weekly dosage plan, I would be having my DHT measured whether he agreed or not. He agreed that measuring DHT is a good idea. I'm also going to be asking for TAUS measurements of the prostate size as another way of checking whether the plan is working. Further, I'll continue to keep my urination journal.
Between now and the start of the "maintenance" plan, I am going to be researching if there are natural supplements that can help keep my DHT low so that I can really reduce if not eliminate the need to take dutasteride. I have no desire to stay on these drugs. We'll see how successful I am.
1 like, 44 replies
Howard31850 rdemyan
Posted
Very impressive analysis!! I started on Proscar (finasteride) over 12 years ago now. After about a year it did reduce my PSA by half and my prostate size by about 30%. But after another few years these benefits were gone and my PSA/prostate size returned to their original values. During this time I lost all my body hair ad grew man boobs and of course my libido was really poor with little ejaculate. Meanwhile my head hair grew like crazy!
At that time my uro gave me Avodart (dutasteride) for the reasons you mention. It did not help me. So I've been taking this darn drug for over a decade now and whenever I try to stop it for more than a few weeks I lose my ability to natural void (I CIC 4 times/day but still have good NVs). This is the so-called dutasteride syndrome. I do measure my serum DHT each year and it remains undetectable.
I also take alfuzosin all these years and do like this drug as it helps me pee and has no side effects for me. I took it for 2 years prior to starting the 5ARIs and was ok.
For me it seems that after many years of these 5ARIs the DHT production comes roaring back when they are stopped which as a potent growth hormone accelerates hyperplasia i.e. prostate growth.
Short term use, under a year may be ok to rpepare for surgeries etc but long term use is a death sentence in terms of QOL. Good luck and again nice analysis.
rdemyan Howard31850
Posted
Thanks, Howard. Yes, I am very concerned about long-term use.
rdemyan Howard31850
Posted
Some of what you say is concerning to me. Like the part about your prostate growing back to its original size despite being on finasteride. If DHT is the culprit, as virtually everyone believes, then you have to wonder why. It might be because the second mechanism for producing DHT (which Avodart interferes with but Proscar does not), had its rate increased by the body. In other words the brain keeps getting a signal that DHT is too low so it eventually is able to trigger increased production via the 2nd pathway. Pure speculation on my part and I am not a medical student.
It's things like this that make me a strong believer in trying to have quantitative data and history (or baseline references). Without those it can be difficult to know where you stand particularly with BPH which tends to just creep up on men. Also, another variable is the bladder itself. The prostate usually gets blamed, but often times the bladder is complicit as well. It makes sense that most men with BPH have some bladder dysfunction since the bladder is often forced to work harder than normal. Further, with age, the bladder has seen more trauma so inevitable decline is to be expected.
Finally, even with all of the quantitative data and recording, in the end I may find that I was only able to delay a procedure. I accept that. An advantage is that there may be better and safer procedures coming on stream in the next five to ten years.
derek76 Howard31850
Posted
Has your Uro not suggested a surgical option ?
derek76 rdemyan
Posted
There seems to be a new or novel procedure every year now but not one that has gained universal approval.
Not many can ignore their prostate growth for a decade without probable damage to bladder or kidneys. Allowing it to grow means an increasing PSA that doctors will want to pursue.
Everyone knows of the dangers but most want to put off a decision in case they make the wrong one.
rdemyan derek76
Posted
"Not many can ignore their prostate growth for a decade without probable damage to bladder or kidneys. "
I've wondered about this with regards to those who self-cath. As far as I know the majority aren't in anyway trying to stop the growth of the prostate. Is self-cathing really a long-term strategy that anyone can employ? Does there come a point where it gets more difficult to self cath because the urethra is being sqeezed more or can one always assume that the catheter will be able to push its way through? I don't know the answers to these questions, but it seems like there are some who have been self cathing for a long time.
Howard31850 rdemyan
Posted
You certainly hit all the right buttons! My uro has been itching to do surgical procedures on me for a long time. In fact I have had I think 6 uros by now because I keep firing them everytime they get the knife out.
Three years ago when I went into full retention I was faced with having my very large (300cc) prostate removed or learn CIC. So I learned CIC, thanks to this forum and have been a happy camper ever since. But as you say I view it as temporrary until a new simple non-invasive procedure comes available.
Three years ago my bladder was in bad shape and my kidneys were showing stress. Now my bladder has rehabed quite a bit and my kidneys are fine all thanks to CIC.
I did have a PAE at UNC a long time ago now but it did not help at all.
My take on DHT is this: For the 8 years or so I have been on Avodart my annual DHT blood serum levels are not detectable. So if the brain is trying to do an end run around the 5ARI then it is not showing up in the blood.
But as you say I believe that we cannot fool mother nature. So while Avodart has shut down the primary pathways for DHT production in the prostate the prostate has figured out new pathways to keep some level of DHT in production, but not enough to show up systemically.
This must be a very efficient mechanism for sure. So when I try to stop Avodart the prostate has become so super efficient at making DHT that once the primary production lines are open again the DHT levels zoom skyward and so does my hyperplasia.
rdemyan Howard31850
Posted
I thought you were on Finasteride. I missed where you stated that you switched to Dutasteride. You have no other issues with the 300 gram prostate such as a constant discomfort in your perineum?
derek76 rdemyan
Posted
When I had my aortic valve replaced I told them that I thought I had prostatitis or an infection at the time. They evidently could not get a catheter in and had to use a supra pubic one.
Howard31850 rdemyan
Posted
I've been self-cathing for almost 3 years now and recently passed the 4000 catheter mark. Not only has CIC rehabilitated my bladder detrusor muscles as evidenced by a recent cystoscopy that showed trabeculation much reduced but also it has rehabed my kidneys which were showing signs of hydronephrosis. Further when I started CIC I had no natural voids and now my natural voids are about 200 to 250 cc (my PVR from CIC are the same values) do I am emptying half my bladder now on my own, and that is with a 300 cc prostate! I think CIC helps to dilate the urethra and make it easier to natural void.
So yes CIC is a long-term strategy. I do not have a median lobe so that helps. Also some research shows that the prostate stops growing after age 70 due to BPH i.e. the growth spurts range over 20 years from 50 to 70 with regard to this disease. I guess I will see as I turn 70 tomorrow!
alan86734 Howard31850
Posted
Happy 70th Birthday, Howard! And happy 4000th+plus catheter insertion!
Best wishes, alan86734.
derek76 Howard31850
Posted
I had GL at 70 for a 75 grm prostate. Nine years later it had grown to 135 grm so they still grow. My father in laws did not stop either and as he was not fit enough for surgery in TURP only days he ended up with a permanent catheter in for his nearly 300 grm prostate when in his 80's.
derek76 Howard31850
Posted
I'll send you a big pack of catheters instead of a cake 😃
How much did 4000 catheters cost ?
rdemyan Howard31850
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Thanks for the response and Happy Birthday.
Howard31850 alan86734
Posted
Thanks Alan for the good wishes - time sure flies when we don't pay attention to it! I wish you good health. Howard
Howard31850 derek76
Posted
Hi Derek - Gee I was hoping it would stop growing but I guess not. I don't think medical science understands much about fundamental mechanisms. I am always amazed when i ask a doctor or researcher why something is the way it is and tey respond that they do not know. I guess that is why they "practice" medicine. Us engineers would not get too far if we just "practiced" engineering!
I get my catheters through Medicare A so it has not cost me anything other than the premiums I paid in over 50 years to the system! I get 360/month of Coloplast Speedicaths 14fr coudes and I am very happy with them. It really is easier now than flossing my teeth at night - just as jimjames promised me!
Howard31850
Posted
I meant to say I get 360/3-month period - not per month!
timothy81571 Howard31850
Posted
Howard,
How does a 300g prostate even fit inside a person, that is massive? Doesn't affect the space needed for your bladder?
oldbuzzard Howard31850
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You have a lot of options now that could make you pee normally - possibly for life. With no median lobe, PAE,and Rezum would probably both work.
derek76 Howard31850
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I'd never heard from anyone that they stop growing. It would not surprise me if most patients were not in their 70's. My last Uro wanted me to take Avodart to prevent future growth . When I said that at my age I did not expect it to have time to again reach operating size he glanced at his screen and said 'Perhaps not'
I was told that my replacement heart valve should last at least 15 years. I'm half way towards that but as the surgeon said the chances are one of the other big three might get me by then.
Howard31850 timothy81571
Posted
Yes it does impinge on the bladder neck and the rectum and lower bowel as well. But I seem to function ok all these years. At some point I will likely follow DaveCanPee's example and just have it removed by a robotic simple prostatectomy. His was the same size as mine and when he went into retention and had a Foley put in he just found a doctor who could remove it. He seems to be doing very nicely but he is much braver than I am. I am happy with CIC and always hope something new will come available. I had a PAE a few years ago and it did reduce my overall size from 280cc to 180cc but I did not get any symptom relief as all the dead tissue was well away from the urethral region where the compression takes place. They could try to target the urethra closer in but then there is a real danger of embolizing the urethra which is not good.
Howard31850
Posted
I forgot to mention that since my PAE my prostate has grown back from 180cc to 300c. So I guess it won't stop growing tomorrow!
Howard31850 derek76
Posted
Or ... maybe you will just outlive all those doctors!
derek76 timothy81571
Posted
As it is not a dense object it must be taking up a lot of room. A normal 25 grm prostate is said to be the size of a walnut.
derek76 Howard31850
Posted
We once in the late 1960's had a very old doctor, a dapper little white haired, tweed suited Scotsman. There seemed to be no retiring age for doctors then. He must have been coming up for 90and and his just as old wife drove him around so when she died he had to retire.
He used to sit in his surgery smoking a big pipe. I once asked him how he accounted for his great age. He said moderation in all things and an excess of Whisky.
I was unwell one Saturday and he made a house call. Before leaving he picked up my newspaper that was open at the racing page and quickly marked three horses. Back those he said and you'll feel better. They all won, I felt worse as I didn't back them.
rdemyan derek76
Posted
derek: Great story!
Howard31850 derek76
Posted
Great story - I thought you might you might be setting up for a limerick! Happen to know any? I do but they would never get past the moderator!
My prostate is actually the size of the female bladder - my claim to fame.
There was an old doctor named Scottie,
Whose wife dragged around in their buggee,
He said - to live best,
Avoid all excess,
Except when it comes to the bottle!
derek76 Howard31850
Posted
Good one.
That doctor had also been a footballer (soccer) when at University in Glasgow. Queens Park one of the founding Scottish league teams who have always been amateurs. They were a top club until well after the war when money started to rule the game. They do however own Hampden Park which is the National Stadium and had a capacity of 150,000. Now it has been rebuilt with a smaller capacity of about 52,000 and also used for athletics and pop concerts.