Urination frequency/urge drug? : Hi all, I... - PSP Association

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Urination frequency/urge drug?

ABouquet profile image
19 Replies

Hi all,

I'm remembering a post discussing the two drugs used, usually in conjunction, to lessen the frequency of the trips to the bathroom. My mother is in Arizona and has finally gotten her PSP diagnosis this summer as she's been through MSA and Parkinson. She's starting to get up more and more frequently at night and I'm not sure if urinary pills or sleeping pills are found to be helpful with this. I read someone's post about 40x a night! But she is on some prescription for the urination urge and it didn't ring my memory bell. Perhaps it's not the best one.

Thank you,

Amanda

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ABouquet profile image
ABouquet
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19 Replies
Kevin_1 profile image
Kevin_1

Hi Amanda

My wife is on

Mirabegnon / Betmiga 50mg Once in the evening

Vesicare Solifenacin 10mg Once in the evening.

They work really well.

They can push up the blood pressure - so the Doctor needs to keep an eye on that as they work the dosage up to an effective level.

Of course a hypertension medication can be used to control that to some degree.

There may be other meds. hopefully others will pile in.

Best to you

Kevin

ABouquet profile image
ABouquet in reply toKevin_1

Thanks again! There seems to be somewhat of a consensus on these drugs at least. Though they don't seem to help everyone. The waking up isn't always related to going to the bathroom so there's that too. It's just rough going all around.

Best wishes to you both,

Amanda

Satt2015 profile image
Satt2015

Sorry Amanda

I think this is another ‘evil’ of Psp

I’ve found nothing that works x

Kevin_1 profile image
Kevin_1 in reply toSatt2015

That's very interesting Amanda

A negative result is still a result.

The meds. I recommended work really well for Liz.

I wonder if there is a male / female difference here?

I do hope others post about this it's such big thing.

Better nights sleep for the loved one and a more survivable schedule for the carer. It's massive.

Hoping for more posters.

Hugs all round

Kevin

Kevin_1 profile image
Kevin_1

Hi Again, I've been thinking.

There is also a botox treatment.

The meds. I mentioned all act on the bladder sphincter which can become too relaxed with PSP/CBD.

Botox works on it too, in what way I don't really know.

My wife and I went to the UCL Urology Clinic London (world class) and we talked with the botox specialist.

Summary, it might work for up to six months, minor opp., but there is a danger that the patient might need a catheter because it might be too effective. After discussion the Doctor decided that meds. were the best route for my wife. The risks with Botox were not worth the benefit.

Best to you

Kevin

ABouquet profile image
ABouquet in reply toKevin_1

Thank you, I'll check that out. All new to me - much to learn!

Best wishes,

Amanda

Babowen898 profile image
Babowen898 in reply toABouquet

Amanda, my hubby has been receiving Botox injections for urinary frequency for over 3 years. Yes, he has to catheterize himself each time he goes, but took to that like a duck to water. He says the cath is no problem and he would rather do that than go pee every 15 minutes. He receives the botox about every 8 months. The procedure is relatively simple, a little pain and bleeding the first day. Takes 3 days of antibiotic after each treatment. AND he rarely has to get up to urinate during the night. From what we hear, most everyone who gets these treatments ends up cathing themselves.

Nanny857 profile image
Nanny857

Hi Kevin, Urology consultant recommended 50mg Mirabegron-Betmiga for W but GP put him on something else which made him very sleepy, then tried Versicare Solifenacin and as this didn't work, GP gave in and prescribed what Urologist recommended. W has been on it now for 3 weeks and so far this isn't working either. From 10pm to 6am W is up maybe 4 or 5 times. Most times I cope ok, but these last 2 days when I've had the 2 grandchildren to look after as well, let's say I was a bit tearful at times today and feeling a bit sorry for myself. Now when all are tucked up in bed and looking like angels, I feel guilty for not being patient with them.

I might say to GP about trying the Mirabegron and Solifenacin together. If he's not willing, then there was a post recently where someone mentioned their loved one had a procedure done and they both now get a full night's sleep. Oh how wonderful that would be, a full night's sleep, it's been years since I had one.

Love to you and your beautiful Liz xx

AnneandChris profile image
AnneandChris in reply toNanny857

Hello there

Chris has been put on Tamulosin which has helped. He usually only wakes up once a night, unless he's restless for some other reason.

Hope this helps.

Keep on, keeping on

Anne

Nanny857 profile image
Nanny857 in reply toAnneandChris

Thanks Anne, W is on Tamulosin too.

After my posting last night, W has slept the whole night through, waking up at 7.30. He normally goes to bed around 7pm but last night it was 9pm as we were late home from our daughter's. Maybe he should stay up to 9 every night!! Thanks again for your reply. Nanny857

raincitygirl profile image
raincitygirl

My hubby was on several meds for shrinking prostate which was supposed to help (avodart and tamsulosin) in addition he took myrbetriq (which may be the Canadian version of mirabegron?) Honestly, none of it helped :-(

The next thing I was going to try was having him sleep in a really good lounge chair sitting up as he never had the constant urge all day long - just at night....Don't know that it would have worked... He passed away before we tried it.

I wish you better luck xx

Anne G.

ABouquet profile image
ABouquet in reply toraincitygirl

Thank you so much for responding.

Best wishes,

Amanda

Tippyleaf profile image
Tippyleaf

My husband takes Mirabegrom, Trispium & Tamsulosin (latter is for prostate probs so not useful for your mother ) The best thing has been a 12 week Course ofTibial Nerve stimulation ( acupuncture). Though we did not see any improvement until week 9 . He is now having a monthly top up.

The TNS has increased his bladder capacity = fewer falls!! Instead of pu every 1-2 hours he can now go up to 4 hrly - on occasions though Incontinence has not improved as his urgency is impossible to manage!!

Good luck - there are things/meds they can help

Love Tippy

ABouquet profile image
ABouquet in reply toTippyleaf

Thanks so much! The acupuncture is very interesting to me, I'll look into that as well as the meds. It's called Tibial Nerve Stimulation? I will definitely look into it.

Thanks again,

Amanda

Tippyleaf profile image
Tippyleaf in reply toABouquet

Sometimes called Posterial Tibial Nerve stimulation (PTNS) or Percutaneous Tibial Nerve stimulation (PTNS) check out nhs.uk/conditions/urinary-i...

This is commonly used in patients with MS. Like meds not everyone finds the same benefits so I guess we all keep trying until we find something that helps. I see the benefits for my husband of PTNS but it is incredibly labour intensive initially. 12 consecutive weekly sessions - we saw no apparent benefit for first 2 months - actually made the incontinence worse but from week 9 we saw an improvement - it is not a cure simply an improvement his bladder capacity increased and from pu every 1-2 hrs on a good day he can now go up to 4 hrs. it should improve urgency too but my husband has not gained this benefit. But every little helps!!.

Good luck hope you can find something to help your mother

Love Tippy

Dickenson2 profile image
Dickenson2

John has tried several of the drugs mentioned none having any effect x

ABouquet profile image
ABouquet in reply toDickenson2

Oy. Sorry to hear it. Best wishes,

Amanda

AJK2001 profile image
AJK2001

My Mum uses Tropsium, which definitely helps, though I think there are some concerns it can make people a bit less steady on their feet, as she only mobilises with someone there we decided it the benefits were greater than the risk.

ABouquet profile image
ABouquet in reply toAJK2001

Thank you!!

Amanda

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