Any alternative to Tamsulosin to treat Nocturia due to prostate problem?
Posted , 12 users are following.
I'm a 53 year old male in good health except for the fairly recent onset of Nocturia. My need to urinate pretty much every hour during the night began suddenly around 3 months ago. At the time of writing this, the resulting fatigue/frustration due to sleep deprivation is having a massive impact on every aspect of my life and I'm at the point of giving up any hope of a restful nights sleep in spite of being totally exhausted.
After several visits to see my GP for blood and urine tests plus a DRE (after which the Dr told me my prostate felt okay) I was referred to a urologist 2 weeks ago. After a second DRE (again told my prostate felt okay) and a urine flow test, the urologist explained my PSA level was slightly high for my age at 4.5. He offered me two options, either have an immediate prostate biopsy or wait 3 months and retest my PSA level... I elected to wait. Unbeknown to me, the urologist also instructed my GP to prescribe Tamsulosin 400micrograms (Diffundox). I only found out 10 days later having made yet another appointment to beg for help with getting some sleep.
My annoyance with the GP was cancelled out by the immense relief at finally being prescribed something that might help, but any relief was very short lived... After taking the Tamsulosin for the past 3 days, I can't face taking them again today due to the side effects!... I know it may sound trivial to some, but the side effects are compounded by the fact the medication is having zero effect on the nocturia and my being exhausted. I was still waking almost every hour by the urge to urinate, but thanks to the Tamsulosin my throat and mouth were so dry I didn't even have any saliva to swallow, a persistent dry cough, pounding headaches and disturbing nightmares impaired what little sleep I had been getting, chronic diarrhoea began the morning after taking the first capsule, while the headache and hoarse voice persisted throughout each of the 3 torturous days... On the only positive note, I did notice a slight increase in my urine flow rate, but as I'd never considered the pre-tamsulosin flow a problem it was nothing to be excited about.
My dilemma is... I feel as though I'm back at square one. Where do I go from here? Do I make yet another appointment with a GP and ask for referral back to the urologist?... Will the urologist simply offer me option number 1 again and point at a biopsy needle?... Or is there an alternative medication to Tamsulosin?... Hopefully one that works for frequent night time urination and without the side effects, but with that said, I'd suffer the side effects and hopefully medicate to lessen them if it meant getting even a few hours quality sleep.
Any input or advice will be gratefully received and thank you for reading.
2 likes, 53 replies
caringbah BadlyCat
Posted
You probably need a second opinion as well. If your prostate is Ok you may have an obstruction.
surfman012 BadlyCat
Posted
jimjames BadlyCat
Posted
If it turns out that you have a high PVR and are having partial and relatively small voids during the night, then the nocturnia may be remedied by either medications, surgery or self-catherization.
Sounds like you are trying the medication route with Tamsulosin. If that isn't working, the next least invasive choice for me would be daily Cialis. It has a different side effect profile and in some studies outperforms Tamsulosin for BPH symptons including incomplete voiding.
If the medication route doesn't work, often surgery is prescribed. Either some version of TURP or one of the newer procedures.
In my case, I chose not to have surgery because of potential unwanted sexual side effects and went on a self-catherization program called "CIC" for clean intermittent catherization. When you perform CIC you completely empty your bladder each time.
Prior to CIC I went to the bathroom 5 or more times a night, depending on fluid intake, sometimes every hour like yourself. The problem with me was incomplete emptying (high PVR). Now with CIC, I usually sleep through the entire night without having to go to the bathroom. Sometimes I get up once, and only very occasionally twice. And that would be if I had a high fluid intake in the evening as in a round of late night beers.
On the other hand, If it turns out you have a normal PVR and normal nightly urine volumes, then CIC probably won't make any difference, not would Tamsuloin, or perhaps even an operation. Then it would be time to look into other medical and possibly lifestyle reasons for the nocturia.
Jim
kenneth1955 BadlyCat
Posted
johnsv6 BadlyCat
Posted
kenneth1955 johnsv6
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bruce19007 BadlyCat
Posted
Please don't think I am a crackpot when I tell you I had a similar problem. It may not be the same for you, but it's a siple thing to try so you have little to lose. I had to get up 5 times a night to pee. I even had the problem while awake in the evening. Believ it or not the cause was beer. I was not a heavy drinker by any means, but I discovered that when I didn't have a beer, I didn't have to go every 20 minutes. It may not help at all, but maybe it could. Best of luck to you.
charles40613 BadlyCat
Posted
dan93230 BadlyCat
Posted
Tamsulosin takes about a month to have effect (though I think I still don't get much benefit from it).
Maybe you should be checked for an infection.
Urolift or Holep might really help.
If they're concerned about possible cancer, I think these days an MRI is supposed to precede a biopsy.
wally5 BadlyCat
Posted
A strange thing that I see in your e mail is that your urologist say that 4.5 is slightly high for your age. My urologist thought that 3.8 was tvery high for the age of 49 and told me to immediately do a TURP. Im from South Africa and I dont think my urologist was telling me the truth about a lot of things . So I confronted him about it after the operation of what I thought was a lot of lies but ofcourse there is no way to undo the operation now and at that time I had the idea that a high PSA means that I might have prostate cancer and I thought that I could trust the man because he is a specialist.
anyway try to cut out the starches about 5 hours before you go to sleep and try to find a urlologist that explains to you what he think is wrong and who give you a few alternative treatments for it.
derek76 wally5
Posted
BadlyCat
Posted
This being my first venture into online discussions, I'm unsure if I should respond to you all individually or attempt to address any points raised in a single reply... I figure/hope (through a sleepy haze) it will be less messy and more legible if I respond in this single post.
Firstly, I'm determined not to dismiss or rule out ANY course of treatment (herbal or otherwise) that resolves my issue of urinating 6 or 7 times every night. I say this with the proviso that said treatment actually serves to alleviate or cure the problem, as opposed to taking 'tamulosin' which proved totally ineffective and further lessened my quality of life (as miserable as life is right now)... I desperately don't want you guy's to read this and think I'm a wimping out of a course of treatment after experiencing a few 'minor' side effects. I'm more than familiar with the misery pain brings having survived the agony of a brain haemorrhage plus being an ex-biker and amateur motoX rider, I've spent more than my fair share of time as a hospital in-patient, mainly orthopaedic wards for the likes of a broken femur and other various bones, but also a few stays on surgical wards including one stay for a particularly unfortunate spill that left me with painful peyronie's disease since my mid 20's, but that's another story and one that I'm dearly hoping won't have any bearing on any treatment for my current prostate problem. (I've recently googled 'cystoscopy' and can definitely say me and my acutely curved penis don't find the prospect appealing in any way shape or form.)
I've found it truly heartening to read I'm not alone in finding 'tamulosin' not only ineffective, but also a classic example of the cure being worse than the disease. I'm also more than a tad jealous of those who've found it to be an effective medication... Re-reading the above responses has me realise I may be at the very beginning of what may be a long road in terms of being "cured"... You guys have also caused me to realise my nocturia is merely a "symptom" of some underlying issue, and that issue hasn't been medically diagnosed yet.
My original post was a little vague in describing my experience and treatment to date so I hope the following details save you guys from second guessing what and if I've had this or that test or exam. My initial appointment was the first available to me, 9 days after the onset of nocturia and with a Lady Dr... Her comment of "There is good reason sleep deprivation is used as a method of torture" at least showed she had an understanding of my tormented state of mind and her empathy was greatly appreciated. She requested a urine sample, which she tested there and then for sugar. I got and still hold the impression she was semi-reluctant when prescribing 'zopiclone' tablets to help me sleep, advising I use them sparingly and only when desperate prior to referring me to the practice nurse for blood tests. The zopiclone certainly helped in terms of aiding me get back to sleep after each trip to the bathroom, but did nothing to decrease the hourly urges... Frustratingly, it was a further 7 days wait before a nurse was available to take the requested blood samples.
I duly attended the 2 minute appointment with the nurse for blood tests and received a phone call a further 12 days later from Dr's receptionist informing me I needed to make an appointment with a male Dr for the results... I'm unsure if the significance of a 'male' Dr being stipulated was lost due to my haze of tiredness or my being devastated at being told the soonest available appt was another 10 days away. By this point my appetite was almost non existent, I'd given up any hope of getting any more than 40 minutes sleep at a time and resorted to retreating to my man-cave (workshop) during the wee small hours to avoid disturbing my wife's sleep.
The 10 day wait to see the male Dr saw a significant decline not only in my quality of life, but also in my mental and physical health. I was barely eating, mainly due to having lost my appetite, but also because I was snatching odd hours of sleep whenever my body demanded I do so, food simply had no place in the new regime... I deliberately reduced my fluid intake after 4pm, dropping from an average 2 or 3 litres per day to around 1 litre in the vain hope it would lessen my need to urinate so frequently, it only served to decrease the volume voided each time with no effect on the urges. Spending time with my wife and daughter also became a rare event, the torment of having zero quality sleep was leaving me prone to uncharacteristic mood swings, I was irritable and frustrated that anything which required sustained attention or concentration was beyond my ability. Whilst I could afford to lose up to half a stone, the rapid weight loss together with becoming dehydrated left me looking and feeling 20 years older.
The eagerly and long awaited appointment with the male Dr revealed nothing remarkable or untoward had shown up in the results of the recent blood tests. He reassured me not having diabetes was the 'good news' before announcing the 'bad news' was the problem could be prostate related ... Explaining in the briefest of terms how the prostate gland enlarges with age and pinches the urethra as he invited me to undress from the waist down and rest my elbows on his examination table... One very unexpected and prolonged digital rectal exam later (during which he 'joked' he needed a longer finger, to which I admit to remaining awkwardly silent... Is there even an appropriate response to ANY attempt at humour when a man has a finger fully inserted into your rectum?). At that moment in time, I just wanted the floor to open and swallow me. Even after feeling him withdraw the offending digit he left me to endure the indignity of remaining bent over the table until I asked if the exam was over. I couldn't have cared less that he failed to offer me a paper towel or tissue to wipe away the excess lubricant, I was just relieved the humiliation was over and I was able to get dressed... The appointment concluded with him eventually informing me my prostate felt okay and adding he suspected I may have a bladder infection that would require a 7 day course of antibiotics... I left the surgery feeling both relieved that diabetes had been ruled out and my prostate wasn't enlarged, but sceptical over his diagnosis of a bladder infection.
As soon as I arrived home my significant other half insisted I listen to her accounts of personal experiences regarding water infections (I've never had one in spite of being catheterised numerous times in the past). My wife effortlessly succeeded in reinforcing my doubts over the male Dr's diagnosis and advised I make another appointment just in case the antibiotics didn't work... Mercifully, I took heed of her advice and managed to reserve another appointment which fell just 4 days after I'd completed the 7 day course of antibiotics.
Unsurprisingly, the antibiotics served no purpose whatsoever. I honestly don't think I've ever felt so low and miserable in my life before as I did when I got to again see the Lady Dr I'd initially consulted, but it had been 7 very long weeks since the first sleep disturbed night... Her concern for the decline in my physical appearance was obvious, requesting I provide an immediate urine sample, recording my vital signs and instructing I start keeping a voiding diary. It was a reassuring appointment in the sense that my complaining about peeing frequently seemed to be finally taken seriously. I left after being sent directly to see the nurse for another series of blood tests, given another prescription for zopiclone and promised a priority referral to see a urologist as well as the instruction to make another appointment to see her again in 2 weeks time. I've no clue how other GP's surgeries work, but mine refuses to make appointments more than a week in advance. Explaining to the receptionist that the Dr had requested I reserve one was futile. I left with the advice to phone for an appointment in a weeks time.
Attempting to make that appointment turned into a complete fiasco. I waited a week as instructed and called only to be told the Dr had left a note on my records stating she wanted the results of a CT scan before seeing me and I'd receive a letter from the hospital x-ray dept any day soon... (Apparently one of the blood tests had shown an increased level of some type of enzyme and the CT was to check my pancreas - I think... It has never been clearly explained) The letter arrived, 9 days later I'd had the CT scan and been told by the radiologist the results would be with my GP in a week or so... My significant-other-half intervened at this point, calling our GP's practice manager and insisting I be contacted and seen as soon as the results were available. It appeared to have the desired effect and I was seen by a Dr I've not met before (A locum I think?!?... Do regular GP's only work three and a half days per week these days?)... Anyway, the locum Dr spent 9 minutes of the 10 minute appointment staring at the computer screen before stating everything looked fine and suggesting my diet was causing the enzyme/digestive problems. He never even glanced at the voiding diary I'd studiously recorded for 72 hours and placed on his desk... I left not best pleased (to say the least) with a referral to see a dietician.
Another 5 days after seeing the locum, I was sitting in a urologists consulting room and as mentioned in my original post, after a short question and answer consultation I was given a second DRE (A totally different experience to that I'd endured at the GP's surgery!) Trousers lowered just enough while laying in a more dignified position on my left side atop the exam table, if I said the exam lasted 20 seconds I'd be exaggerating! It was literally over in a few painless seconds! I was even given tissues as well as being told it was over! I was soon being told for the second time my prostate gland felt normal. The urologist asking for the IPSS form I'd completed in the waiting room proved an opportune moment for me to also hand him a copy of the voiding diary (My wife deserves the credit for my having it with me). The 5 days worth of the voiding diary I'd put every effort into recording accurately appeared to grab his attention and preceded a series of questions to confirm I'm tea total, only drink decaf coffee, water or milk, no fizzy caffeine laden drinks and a non smoker. The average of 7 night time bathroom visits showing an average of 150ml voided, his study of the diary preceded a request I go sit in the waiting room and drink as much water as I could humanly hold before knocking on his door ready to perform a urine flow test.
An hour or so later with a litre and a half or so of water consumed, the urine flow test done, a nurse immediately performed a ultrasound scan of my bladder. Viewing the results, the urologist commented that both the flow and the scan were satisfactory (I assumed the scan showed an empty bladder). He continued by explaining the most recent blood tests results showed my PSA (Prostate Specific Antigen) was 'slightly high' at 4.5 as opposed to a 'normal' 3.0 for my age... It was at this point I was offered the choice of having an immediate prostate biopsy (there and then... eeek!) or waiting 3 months and retesting my PSA level, I chose to wait. A choice which seemed to meet with the urologists approval... Ironically, the results being 'satisfactory' left me dreading being told to leave without a 'cure' or at least a diagnosis to cling to, but at the same time already expecting to be asked to return in 3 months for results of a fresh PSA test... Unfortunately, that's precisely what happened... I was given a sterile sample bag with a form attached to leave at my GP's surgery requesting blood sample be taken for a PSA test in early August... I was devastated, but part blaming myself for turning down the biopsy.
As mentioned in my original post, I only found out 10 days later that the urologist had also instructed my GP to prescribe Tamsulosin and I began taking the Diffundox brand. Quitting after 3 days due to them doing absolutely zero for the nocturia and the side effects pretty much preventing any chance of sleeping.
I'll end on a brighter note... I'm due to see the Lady GP again tomorrow morning, and having read everyone's responses here more than a few times (I've kept edited notes of the various meds, suggestions and experiences) I'm feeling more aware of the issues involving the prostate gland, bladder and urinary problems, I'm also quietly confident of taking a more proactive stance in regards to the treatment I can expect taking into account the detrimental effect sleep deprivation is having on my general health.
If anyone has taken the time to read this far and/or responded, I'd like to say thank you very much, as I've found researching everyone's contribution alongside other discussions and my appointments diary while writing this a much needed and very welcome distraction.
Regards
BC
kenneth1955 BadlyCat
Posted
bruce19007 BadlyCat
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kenneth1955 bruce19007
Posted
BadlyCat kenneth1955
Posted
And yup! I've kept busy educating myself by independently researching several aspects of my condition. In fact I discovered today that the PSA reading which I was offered a prostate biopsy on the strength of may have been unduly high due to a number of possible factors I wasn't made aware of when the blood test was taken... •urine infection •vigorous exercise •ejaculation •anal intercourse or prostate stimulation •a DRE •catheterisation amongst others... It seems kinda negligent that they failed to ask if any of the above applied before telling a guy his PSA was raised and offering an immediate biopsy!
Thanks for sharing the details your two cystoscopy experiences... All reassurances are greatly appreciated here. I've watched the procedure online, and whilst I still have a few concerns over my having peyronie's disease, I'm feeling more confident it won't be an issue having been catheterised more than a few times in the past without any problems or pain... Although I'll maybe ask for a chill pill before mine after reading of your pain when the camera reached your prostate... Ouch!
Regarding the tamulosin... Again it's reassuring to read I'm not the only one they disagreed with. Your choice of describing the side effects as "the pits" fits perfectly with how they made me feel! You seem to have been through the mill having suffered with sepsis, kidney failure and repeated infections. I can only offer my sincere sympathy and best wishes for your future health.
I've not had any invasive checks for anything bladder, urethra or prostate related yet (Excluding the two DRE's) so I guess I won't discover if I've developed a stricture until I've had a cystoscopy, fingers crossed it's a clear path all the way to my bladder... I've just watched an animation of the urolift. It looks like a tremendous advance in prostate treatment compared to the drug therapy and butchery of other procedures for sure. I'm delighted it worked out so well for you, but at the same time I'm hoping my ability to pee without a reduced flow and being told twice my prostate feels normal equates to not having BPH or worse.
Thank you again for responding Ken, take care.
Kindest regards
BC
BadlyCat bruce19007
Posted
I enjoyed reading your analytical approach to diagnosing the root cause of a problem, as opposed to simply masking the symptoms. I intend making every effort possible to ensure the urologist gets to the core reason for my nocturia. In part, I guess it's why I didn't hesitate to quit taking the tamsulosin. As debilitating as my nocturia is at the moment, I certainly didn't ask for and don't want a temporary fix as opposed to being definitively diagnosed as suffering from a specific issue. Much like I'd not allow A&E to treat a profusely bleeding wound by throwing sticking plasters at me in the hope one stuck in the correct place and expect me to come back everyday to get it changed... I'd want the wound precisely located, cleaned, sutured and dressed so it healed correctly and permanently! If it turns out that daily medication is the only means of respite for nocturia, then so be it, but I'm not going to roll over and behave like a lab rat as they take guess after guess as to which drugs might ease my symptoms.
Adding your analytical approach to your process of elimination, but subtracting the "let's throw meds at him until we find one that works" part... Accepting we are talking about highly trained medical professionals who are supposed to be at the top of their game. Given my medical history plus the few test results they already have bothered to gather... Is an educated diagnosis really too much to ask? As you say "It is mechanics and chemistry"...
So a case review... 3 months ago I suddenly and unexpectedly began having the urge to urinate approximately every hour throughout the night. The amount voided is minimal, on average around 150ml. Reducing my daily fluid intake has no effect on the number of urges, it simply decreases the volume of each void. I'm retired, happily married (to a woman.. It's relevant) I don't smoke, don't drink alcohol or caffeine laden drinks. Nor do I take any other diuretics or medication. I was previously in relatively good health, not overweight, physically and sexually active. There were zero lifestyle or diet changes leading up to the sudden onset of nocturia. Two DRE's have resulted in my being told my prostate feels normal. I have no pain and no need to strain while urinating nor do I have any problem ejaculating. I have control over the urges so zero incontinence. Urine/blood tests revealed no infection or diabetes. A urine flow test was satisfactory, as was the ensuing ultrasound of my bladder. Blood tests showed a PSA of 4.5 slightly higher than the expected 3.0 for my age (53) No account was made for factors that may have temporarily raised the PSA level and therefore it is quite possibly a false reading....
I've probably missed other relevant factors, but that is pretty much the big picture and I'll happily answer any Q's should anyone feel like diagnosing what got broken...
Thanks again for your response Bruce. I found it highly thought provoking and a much needed distraction.
Regards
BC
bruce19007 BadlyCat
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kenneth1955 BadlyCat
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johnsv6 BadlyCat
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BadlyCat bruce19007
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I think I've visited more public restrooms in the past 3 months than I've ever visited in my life before.
The urologist asked the same Q and seemed to understand why I merely consider the frequent daytime urination a minor inconvenience as opposed to the same occurring during the night which leaves me exhausted and has a detrimental effect on every aspect of my life.
Regards
BC
BadlyCat kenneth1955
Posted
I spoke with a GP yesterday and I'm pleased to say they completely endorsed my decision to stop taking tamulosin. They were also more than happy to offer me the choice of trying an alternative drug or a referral back to the urologist for further investigation... I opted for the referral in the hope the actual cause of my nocturia will be diagnosed, as opposed to continuing to blindly throw various medications at the symptoms and hoping one works... I requested the GP make it clear I'm willing to accept a short notice consultation should there be a cancellation, so have my fingers crossed I won't have to wait an eternity. I'll post the outcome, but can say for certain right now that I'll be declining any further offer of a biopsy.
Regards
BC
BadlyCat johnsv6
Posted
Your response also serves to reinforce the opinion of the vast majority of other members of this forum, that being, there are old school and incompetent urologists out there using outdated methods of diagnosis and treatment, and it's our (the patients) responsibility to educate ourselves in readiness to make informed choices in regards to our treatment.
I couldn't agree more with your views on the reliability of the current PSA test, especially after being offered an immediate biopsy on the strength of a single result with no lifestyle questions asked. I'm hoping to have a 2nd consultation with the urologist I'm assigned to shortly. I fully intend to question his every proposed course of action in expectation of being given an accurate up to date account of the alternative procedures and treatments available... I'll be making a rapid exit should he even suggest treating anything that hasn't been medically diagnosed. Based on my experience so far, his method is to gather almost no scientific data, run as few tests as possible, or use unsubstantiated, unreliable results before taking a guess at what might ease symptoms... I guess, like yourself, I'll also be looking for a replacement urologist soon, hopefully one that I can relate to and one who prefers to accurately diagnose, treat and cure the underlying cause rather than masking symptoms.
Thanks again, take care
Regards
BC
bruce19007 BadlyCat
Posted
At the bottom of each section there is a link to the next. It talks about the definition, symptoms, causes, risk factors, complications,tests and diagnosis, treatments and drugs and several other categories.
Emis Moderator comment: There is also a leaflet and a more in depth article on our site linked below about this.
https://patient.info/health/overactive-bladder-syndrome
https://patient.info/doctor/detrusor-instability-and-irritable-bladder
kenneth1955 BadlyCat
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johnsv6 BadlyCat
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BadlyCat bruce19007
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Having read the links more than a few times, I'm beginning to understand why whatever is causing me to urinate so frequently hasn't yet been diagnosed. Certainly several of my symptoms fit perfectly with having an overactive bladder or Detrusor Instability, whilst at the same time other symptoms are thankfully absent.
I've already begun a regime of bladder training and pelvic floor exercises as mentioned in the links, although in the absence of any incontinence and being very capable of denying the urge for lengthy periods (Not a fun thing to do several times a night as laying awake in bed needing to pee further decreases the amount of sleep!) I have reservations as to either exercise being beneficial for me personally.
My wife and I have both reached the same conclusion in believing further medical investigation is essential to not only eliminate certain possibilities, but also to reach the correct diagnosis. At the present moment there is only a single test result giving cause for concern, that being the debatable blood test showing a PSA level of 4.5... While I've tested negative for infection and diabetes as well as had satisfactory results in a flow test and bladder ultrasound, plus been told my prostate feels normal after two DRE's.
As I mentioned in my reply to Ken, I spoke with a GP a few days ago and they completely endorsed my decision to stop taking tamulosin. They've also referred me back to the urologist for further investigation... I requested the GP make it clear I'm willing to accept a short notice consultation should there be a vacant slot or cancellation. I have my fingers crossed it won't be too long a wait.
I'll post the outcome of said appointment here, but seeing as my tamsulosin experience is at an end and considering the title of this thread, it may be best to conclude this discussion and begin afresh depending on what course of action the urologist proposes or should I need any further advice regarding the reasons for, and treatment of nocturia.
Thanks to all for reading and especially to those who have responded.
Regards
BC