Hi all - hoping for some breakthrough I haven't read yet
Recall I am 50yr old - PCA, Gleason 9 - casodex to start, now triplet (2nd session of 6)
I am not getting the rest needed to fight this beast nor to function properly. I am waking several times each and every night to pee. I am on Flomax even and still not seeming to help. I don't drink crazy at night and just normal throughout the day.
How much of this is the drugs and the disease?
Lupron 3mth, daro and prednisone daily and vitamin D
I also take a heartburn med and a statin.
Any thoughts or advice is welcome. This getting up all the time or rather let me say this 2hr sleep intervals is ALSO not great for my health huh?
Thanks
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Yzinger
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Increased urinary frequency, especially at night, are side effects of both abiraterone and lupron. I was peeing 4 to 6 times a night. I am now on a drug called Myrbetriq and am only peeing about 2 times a night.
My doc put me on sleeping pills. Grant it, I was 45 at the time and needed to be rested to be able to work efficiently and intelligently. I was getting up around 6 times per night. Along with night sweats. Good luck.
I also have the accompanying night sweats. I really don't want to take another damn pill but this has to stop. I hate to say it but its the worst SE I am having right now.
Maybe you should have an overnight sleep study in the hospital? Sweating could be a sign that you may have sleep apnoea. I have it and I am now using ResMed S9 Autoset APAP machine. The mask is the most important.
I found that 1 silodosin worked better than 2 tamsulosins. There are about 12 alpha blockers. Find one that works for you. Your urologist may have samples - try a few.
TA, I'm taking one Tamsulosin at breakfast and one at dinner time and still get up to pee a couple of times a night. Would it be better to take both after dinner as you suggest?
I have found that whenever I have a hot flash, I also feel the need to pee. During the night, whenever I change my sleeping position, it triggers a hot flash which then triggers the need to pee. As a result, I try to not move around much at night. Taking a sleeping aid helps with that.
I had the exact same. And often. A lot of things going on in the body during the mechanics of a hot flush. Including things with the nerves. As my Lupron treatments ended and in the following months as it left my body The Hot Flashes have become less intense and less frequent and the need to subsequently urinate have improved in step
a different approach is to keep “” pee jugs “ right beside the beds. Those pee jugs sold on Amazon or the standard wide mouth orange juice jug. When you have to go … just rollover to the side with the jugs , reach over and grab a jug, and pee in it. After a while … weeks or more … you will do this automatically without thinking and it won’t actually wake you up. Mornings I wake up …two or three jugs are nearly full. My cpap score less >1 and no sleep interruptions recorded.
Of course , Im mobility impaired ( in a wheel chair ) by my Mets and adt treatment and getting out of a water bed is tricky at best and if I’m in a hurry I can’t get up fast enough. I also sleep with a apap and taking that off and putting it back on is a chore at 3:30 a.m.. I think I have to pee about every 20 to 30 minutes while in bed.
It’s an alternative to having to take “ even more “ meds every day. The only down side is clean-up. You have to pour them down the toilet mornings …. Rinse them out in bathtub …. And squirt some iso alcohol in them, ready to use again.
Yayahahahaya … I can tell you live back east .. out here in LaLa land it’s 10cents or 12cents “ per “ can or bottle. They must be better if they cost more …RIGHT ?? 😂😂😂
About your knee replacement …. What considerations did you go through … including your bone thickness and brittleness. In case others here need bone work. My bones , particularly my knees. , aren’t a candidate for replacement due to the fact I’m too old and 60 months past my expected expiration date yayayayayaya. But , like you , others here are good to go for bone work.
Also, the fact that you are able to have bone work procedures is an indication of your desirable physical condition too. Some here are , like me, just in a holding pattern waiting to auger in . That you are still “ that “ healthy is a really good thing .
Well…..I want to be that healthy! The Dr actually gave me the option to wait till my ADT is finished in June and I start feeling really good. I told him that I would rather have it done now while I’m not 100%, that way once June rolls around I’m off and running literally!
I did have a bone scan 9 months ago as I wanted a good base line on where that stood. All was good as far as bone health goes and the Dr was comfortable with the results as was my MO who is on board with the replacement.
I am fortunate on many fronts. My PSA was 3.5 at the time of Dx, Gleason 9. I was able to catch it while Oligometastatic. Only 3 lymph nodes in the left pelvic chain were involved. 44 IMRT and 2 years of ADT will end in June. Then the real watch begins!
Thats great news. I often wonder if I should even ask my MO about a break down the road. Being a PCa case I thought i heard others says that I will be on ADT therapy for rest of life right?
I have never figured out how to prevent this. Some times it is 8 times a night, some times 1. I keep a urinal right next to the bed and have gotten pretty good at peeing while half asleep. There are many other things like hot flashes obsessive thinking etc to keep me awake. Peeing is jut one of them.
Melatonin keeps me up at night. It gives me the Jimmy legs (twitching) and it does for many people. I tried it. I know it works for a lot of people. Certainly worth a try.
I feel your pain. Note my handle. I’m also a gleason 9 guy on Lupron, Zytiga and Prednisone who wakes up 3-4 times nightly to pee. It is hard on sleep. At some point, usually after a 3:00am(ish) pee, I go back to bed but am unable to find a comfortable position to sleep ( back, left side and right side don’t work). So I get up and head to my comfortable lazy boy. Under a blanked I read for anywhere between 20 minutes to an hour, until my eyes are tired enough to sleep. Usually this results in 6-7 hours of nightly sleep and a head start on the day’s news.
Sorry to hear of your troubles. Keep in mind that poor sleep, interrupted sleep etc is incredibly common with age, with or without disease of any kind.
I sleep 2 to 2 1/2 hours at a time max each night, often a bit less than that. I just try to piece together 7-8 hours total if I can.
A consequence of Pca treatments yes, but it’s no longer strongly associated with urinary frequency-I’m just habituated to the short intervals.
I’ve tried every one of the drugs and every holistic method imaginable to solve it. No apnea, and again not necessarily waking to pee-I just wake.
I’ve also used every sleep aid and combination thereof, but for various reasons I don’t like using them. It’s just how I am, but I know they can really do the job for some.
My experience to this point is that I’m able to get sufficient sleep if I restrict fluids in the evening, get as much exercise as possible (weight lifting seems to help the most) and practice a lot of mindfulness to stay present and grateful. This makes getting back to sleep fast much easier, which of course is the next best thing if one can’t sleep through the night.
Finally, I make sure to rise from the bed and leave the bedroom for a while if I’m really having trouble getting back to sleep. Read, work, walk, meditate, anything else. Then I return nice and sleepy.
I wish I had a single magic bullet for all of us who suffer with this, but like so many things, not trying to resist and solve it so much anymore leads to better results for me. Great luck to you!
On Lupron and Zytiga- one pee per night, 3 or 4 am. I credit kegel training I got with a physical therapist after rad prosta 2.5 yrs ago, but there’s plenty of you tubes on it- takes a while. I take 2 Tylenol PM before bed for quicker drop off to sleep.
Have you and your urologist considered a Transurethral resection of prostate (TURP)? It might be a little traumatic on the beginning but for me it worked.
Have you and your urologist considered a Transurethral resection of prostate (TURP)? It might be a little traumatic on the beginning but for me it worked.
Might be careful about sleeping -pill assisted help......it is possile you simply aren't emptying your bladder, and you NEED to frequently pee in order to avoid kidney damage!!! Perhaps a urology office could help you determine if incomplete emptying is the problem?
I was going to suggest the same thing; Urology visit and simple ultrasound of bladder will determine amount of residual urine; research bladder emptying techniques, look into foods in the evening that can irritate the bladder; I found peanut butter has a tendency to be a bladder irritant. My RO jokingly said stand there for half an hour if you have to; Google is not a doctor, but Google can be your friend.
I switched from Tamsulosin to Myrbetriq with great success…..so far. I’d been taking Tamsulosin for a few years but, eventually, it caused bradycardia.
After my radiation I was up more. I was instructed to increase my Flowmax to .8 and as the inflammation went down I was able to decrease it. Generally I'm only up once a night now. Also if your somewhere you can take gummies, works like the Advil. The sensation is decreased it seems.
It won't stop you from peeing, but I keep one of those hospital pee bottles next to my bed. It keeps me from wondering through the darkness in the middle of the night to get to the bathroom.
My on radiation oncologist has me on Oxybutynin 5 mg. Generic drug. It has reduced night time peeing from 6 or7 times to 2. It has also been found to reduce hot flashes and sweats in 40 percent of women. Seems to have had the same effect on me while I am waiting for Lupron to wear off. You may want to read about this and talk to your doctor. She also gave me FlowMax generic form. Hears hoping you get some sleep.
By pure accident, I pulled a muscle in my back and made a discovery that effected nighttime peeing prior to my radiation. When I pulled the muscle, my GP prescribed a muscle relaxer prescribed by my GP and found that prior to radiation that also reduced the night time peeing. So the suggestion above on a over the counter pain medication my help the same way.
I understand your difficulty. I was getting up to pee 5-6 times per night, which was more of a series of naps than a good night's sleep. My urologist prescribed Trospium. It took about a month to kick in, but now the pee trips are usually 3 per night, which is livable.
You might already be doing this. The steroid (prednisone or dex) was what caused the monster urinating for me. I took the steroids only in the morning and that made all the difference at night. AM is still a pee-fest, but nights are much easier. Good luck!
My MO also prescribed AM and PM for me, but suggested AM only when I told her about the night SE. It worked fine for me, but I know everyone is different. I could get by with the Euro dose, which is half of the US Prednisone dose. At least at the time. I'm on a vacay from Zoladex now.
I've seen a lot of good suggestions and some I'm not a fan of (more drugs). I use a sleep tracker on my Apple Watch to validate how much sleep I'm getting, especially the recovery phase (deep sleep). I used to think the same as you but the app on my watch confirmed otherwise.
I am on Abiraterone, two different steroids and must drink a gallon of water per day for my MM. I also have a dead thyroid and take Synthroid so I'm making the most of it. I do not drink a drop of water between 5:30 pm and bed time which is 10 PM for me. I never alter my sleep schedule. No sweets or booze either. I piss like crazy durning the day and through the evening. I set my watch to vibrate and wake me @ 1:30 AM just to pee. Another alarm goes off @ 4 - I get up and take Synthroid (taken on empty stomach 1 hour before and after.) Another @ 5:30 AM I take Abi and steroid (Again, empty stomach). Then up @ 7am for my MM drugs. Then I work out and have breakfast, I use these times to pee, even though it's not why I got up. I almost always get 100 percent on sleep app and it showed the following.
Awake: 45 minutes
Sleep total - 7 hours 26 minutes (OK I went to bed late because MNF)
Quality sleep - 6 hours 43 minutes
Deep sleep - 2 hours 33 minutes.
Deep sleep is how your body recovers. Minimum of an hour is your goal. I usually get 2-4 hours.
If you have a smart watch, try the sleep apps and find one that works for you. Don't just add more drugs until you have to. Kegals will help you from leaking but they don't stop you from having to pee.
I was getting up every two hrs my self = around 5 to 6 times a night , Recently cut it down to 2 times 2hrs apart then 1 more time 3 to 4 hrs later around wake time if that counts, lol. Ok so certain things aggrevated my bladder green tea, anything with lemon, stevia or artificial sweatners. So what I found that cut down my night pee is to promote more daytime peeing so before noon green tea , early morning coffee add Stephania Tetandra extract . Activeherb company sells it or ebay . I think what really helped was Prostatesure ( Activeherb product ) takes a few weeks to start working started 6 tabs twice a day now taking 10 tabs midday/ once a day. Nighttime I take 1000mg Andrographis, GSE, Apigenin, and 40mg melatonin. Also frequent night pee caused dehydration so rehydrate and pee more in the day if need be.Consider/ research, Citrus Bergamot, DIM, Vitex, Honokiol, Zeolite , Spirulina. I edit in just ordered Bitter Mellon extract ck it out .
I love my homemade tomato soup , but same problem, only have it at lunchtime now. I failed to mention the trial and errors with food and drink. Cold weather is another culprit. Heated car seats are a blessing, lol
lots of replies on this topic I see. Two things. First I take flomax. The pharmacy changed from generic to OEM and there was a difference I noticed a better stream.
Second: I read on this forum some time back that a member tried THC ( oil, vape, smoke, I dont know) so I tried it. Indica strain I use oil as is is cheaper and you can be more precise. It worked for me. Do not take to much at once experiment first. Helps you sleep. Do not take the strain that makes you want to party ( unless you want to party) for around $35 Cdn it worth a try. My last Pee in a monitored toilet and then get your bladder scanned showed that my bladder was emptying.
I don't think I've seen what works for me here; take a shower as hot as you can stand it, it seems to relax the bladder and give a wonderful (albeit temporary) feeling of an empty bladder. Also sleep on your side not your back or stomach as that places less pressure on the bladder.
You are lucky. You only have to pee. I run down the hall, hoping I don't trip over a cat, 'cause cleanup is really ugly. I'm sure j-o-h-n gets up 6 times a night to write down his new groan jokes.
And I can hear the groans all the way in California. Not putting the seat back down was my albatross. What sound and fury. Did sit in toilet by accident once. I see their point. Just hoped the last person flushed.
I have a similar situation. Gleason 4+3, on the same meds plus I just finished radiation therapy and an HDR brachytherapy surgery. After the surgery, I started going every 20-40 minutes and up 3-4 times a night. My Radiation oncologist says it is likely a spastic bladder, and prescribed me Tamsulosin. I've taken it for a couple of days and no noticeable change yet.
Hi Same - apparently no drinks after 6 pm !!!!! <- I cant do this - decaf - sleep hypnosis and a medical wee bottle by the bed and take your time, sit first wee, then stand to empty - Dr suggested this !!!! - hope this helps kindest Raoul
I am up 5 + times nightly to pee….but I fall back to sleep readily. I look at it as a major “inconvenience “ . Perhaps I would feel otherwise if getting back to sleep was more difficult.
I had the same issue. Turned out to be a very high A1C caused partially by low testosterone. I was peeing constantly until I finally had an endocrinologist check it. Stick your finger once a day. Good idea to monitor glucose as the worst symptom of diabetes type 2 is the fatigue it will add on to the ADT. Good luck
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