Hi there- not been on for a while. Hope everyone is as well as can be expected.
I have had fantastic support and advice in the past so hoping for some more now
I take desmopressin 200mcg at night. I call it my magic tablet as stops me getting up 4 times at night to usually only once.
I am really frustrated and embarrassed at the number of times I have to ISC during the day. I am on 2mg of Tolterodine twice a day for this. So not really giving me satisfactory results - tried other bladder tablets and this one was the best
But I am thinking if desmopressin works for me at night. Why can’t I take it during the day too???
Does anyone else do this?
Dont really want to see a GP as I live on Guernsey - no NHS here and I have to pay to see a doctor - £59 last time!!! But I do have really good MS nurse so will email her.
But I find advice from the people who know I.e you guys the best and very much appreciated.
Have you, or your urologist / neurologist considered Botox for the bladder? It sounds like you have a typical neurogenic or overactive bladder and that is exactly what is helped by botox.
I wouldn’t have thought too much desmopressin would be good for you as you’re not supposed to drink too much whilst on the drug, so you might be storing up more UTIs by taking desmopressin through the day as well as overnight.
It definitely sounds like you need to find a solution to never ending ISCing.
I don’t know what the cost / availability of Botox is like on Guernsey or how your healthcare works. But it might be worth the investment, after all, if you have to pay for all your healthcare, you’re probably paying for your catheters anyway??
Botox definitely worth considering thanks. Haven’t quite worked out the Guernsey system. Think pay for primary care but any neurologist will be free- I think they visit once a month but not necessarily MS one.
Desmopressin - didn’t know about the not drinking much aspect. I don’t anyway not enough - lucky if I get 600mls daily as the more I drink the more I have to ISC. I would love to be able to drink more - going to take squash to work and limit coffee to 2 a day which I do anyway - but will be interesting how increased squash works out.
I think my problem was - or one of them was focusing too much on my bowel problems trying to sort them out by fiddling with meds that I neglected my bladder problems and just accepted them - But no more
BH the trials and tribulations of coping with MS I want my prediagnosis life back as Im sure all of us do. Normal bladder and normal bowels thank you very much - I will ask Santa as I have been good this year
my very expensive GP - I am her first MS patient - wants to refer me onto specialist services but I am awaiting my transfer letter from UK for her to do this which is taking a long time as neuro is very busy. I will prompt him again in the new year.
not paying OTT for catheters just a £3.70 prescription charge- which is NOT cheaper than UK as got them free as was on thyroxine- weird reason for free prescriptions but I wasn’t going to argue as saved me a fortune. Over here on Guernsey I estimate that I will be paying approx £50 per month for meds.
However swings and roundabouts - we have no VAT, cheaper tax, no road tax and no MOT needed. However food is much more expensive e.g 2 pints of milk £1.18 as you can only buy Guernsey milk on Guernsey to protect the farmers. I could go on and on and on about Guernsey but need to go to sleep.
Careful Min,
600 mls is only about a third of what you should be having.
Intake and output do not correlate exactly - Urology clinics here usually want 3 consecutive days of I/O chart.
Oedema is often down to lack of exercise in the legs - if the ankles puff up, then you may need a diuretic, but if it is only one ankle/leg then the lack of knee movement is partly to blame.
You might find that with Betmiga and more intake, you actually need to go less often (for men. Tamsulosin is probably better than Betmiga)
I posted on another message about my experiences with the bladder over the years.
Basically, tried everything and the only drugs that worked remotely well were ones that gave me hideous constipation which was worse than the bladder issues.
Earlier this year, I started betmiga which worked fairly well. The GP then suggested combining the betmiga with another drug. After a few false starts, oxybutynin (which I tried before on its own years ago) combined with the betmiga has given better bladder control than I’ve had in years. Urgency and frequency have been drastically reduced.
visited brother and sister in law - 1 mug of coffee = 6 trips to the loo.
then social alcohol drinking with family at evening meal I.e few glasses of wine = up excessively at night.
my desmopressin is not so much my magic tablet anymore as usually up 3-4 times at night alcohol or not. Maybe I’ll come off this for a while as could have built up tolerance as it used to work
latest plan is only 1 mug of coffee at breakfast and rest of the day no added sugar squash
No social alcohol with family at meals
Did that last night and still up 3 times
Just so peed off I am restricting drinks that I like and restricting my daily intake
no oedema
latest plan is to get appointment with continence nurses when back on Guernsey to see what they advise. Will do input output prior to this appointment. Seems to me Betmiga seems like a front runner with potential Botox.
Also need to prompt my UK neuro for his transfer letter
I found some spare desmopressin and have started taking a morning dose as well as my 2 night time tablets. I kept input output charts for before and after starting extra desmopressin.
The result is that the Desmopressin in the morning is reducing me going during the day - yeah
I have contacted the continence team on Guernsey. Had a long chat with a nurse who then contacted the consultant urologist who has said:
I spoke to Xxxxx today and he does not recommend you take Desmopressin twice a day as this could have a detrimental effect on your Kidney’s. ( My GP in UK said could go up if everything else failed)
Blast what should one do??? I have an appointment with the continence Nurse this Monday so I shall ask what damage could be done to my kidneys.
I will also ask about Betmiga - thanks to all who suggested this. Also Botox - ditto thanks.
I wasn’t aware of any kidney issues from taking Desmopressin, but then I do get kidney function (amongst other things) tested yearly, so perhaps there is something.
AFAIK, the main risk with desmopressin is water intoxication, which happens when your body stores too much water and dilutes certain electrolytes such as sodium. It can be quite serious and I’ve had to reduce my desmopressin intake over the years to account for this.
Water intoxication - being on Tec I have regular bloods done including u and es which all have been normal. So hopefully not intoxified!!! I did however get a wee bit tipsy the other night out for dinner with friends!!!
Any way I don’t drink nearly enough for my body to store it - lucky if I drink 500mls daily - yes not enough.
I should say the usual disclaimer here that I’ve no medical knowledge whatsoever, just a patient
AFAIK means “as far as I know”. Regarding the kidney test, its just a blood sample they take (at least for me).
I would ask the nurse about the water intoxication thing. It may not be an issue for you, but I get low sodium levels if I take the desmopressin too much. It basically works too well and and too much water gets retained.
She is definite Consultant wants me to stop my morning Desmopressin due to renal risk. She couldn’t really explain this or tell me where the consultants evidence is for this request.
Bladder training BT - yippeeeeeeeeee done this before and hated it as it was just so uncomfortable.
The process is I should wean myself off caffeine- isn’t decaf coffee just delicious!!!
Aim 1500mls oral fluid per day
Just hang on and hang on and hang on when I need to go for as long as I can stand.
Aiming output of 300mls each time instead of my current 100mls
Betmiga is only on private prescription over here.
Once I’ve done my bladder training. They may consider urodynamic investigation which sounds hideous - a tube up your frontside and backside- lovely. Then they may consider Botox.
i seriously am going to suffer with this BT - thinking back last time I did get up to voiding 300-350 - but obviously didn’t last as now on average 100mls- why can’t they just shove a tube up my whatsit and inflate my bladder
What? Bladder Training? I’ve never heard of anything so bloody stupid. Do they seriously think that all of us with Blair frequency / urgency / incontinence / etc etc etc could do something about it if we just tried a bit harder to hold it!!!
I completely agree with you Min. Stick monitors up your whatsits and check out the urodynamics. Then again, I had a urodynamics test, it showed nothing. They gave me botox anyway. Didn’t help. No wonder really.
I think they’re probably right about the Desmopressin, I’m sure it’s not meant to be an everyday drug. But don’t get too upset about Betmiga, it is wonderful for some people, doesn’t help others. Plus, it gave me elevated liver enzymes. (But then that can happen - my liver has a hissy fit whenever it doesn’t like the taste of something!)
But seriously, bladder training sounds like the most ludicrous idea ever. Are they going to keep you stocked up with continence pads?
There are other drugs. Have you tried Oxybutynin (sorry, you’ve probably answered this already but this thread is quite long now!)?
Sorry Min, I have nothing constructive to say. Just wanted to express my outrage.
Thank out so much for your outrage it is much appreciated.
I think their rational is my bladder is so bloody small it can only hold 100mls before I want to go. So if I do this bladder training malarkey where I force it through hours of discomfort to hold more like 300mls. Then my bladder will stretch maybe, perhaps- is this possible??? To force my bladder to stretch to hold more wee before I want to go.
Still don’t see why they can’t shove some kind of balloon up to stretch my bladder instead- if they gave me a pump I could do it myself gradually.
Anyway like a good girl I started today - 1 mug coffee in morning then loads of squash at work. I hung on and hung on on on - blo…y uncomfortable RESULT was only went to the loo once at work at 2.30pm - couldn’t measure - no jug at work!!! Normally would go at least 3 times.
I must say doing this BT at work is easier than at home as work is a distraction and at home I just snap at my husband when he asks if I’m alright.
I think I need to do a bit of research to find out if worth doing.
Thanks again Sue for your outrage nice to know it’s not just me
Day 1 of bladder training BT went really well I was so positive and happy about it.
All came crashing down on day 2. I reckon all because I followed the doctors advice - you fool- and didn’t take my morning desmopressin which reduces urine production. Which really sounds like a really good tablet if you’re going to the loo too much.
So did the same as Day 1 only 1 mug of coffee at breakfast then onto the squash at work - 500mls
By 10.30 I am so desperate for the loo unlike holding on until 2.30pm the previous day. I desperately try to hold on but it just became painful and I couldn’t do my job properly so I went to the loo. I was so disappointed as managed to hang on until 2.30pm previous day.
It gets worse as can’t remember what time BUT I wet myself - it is just so embarrassing weeing yourself in front of other people. Not that they would know - well I hope not!! But jeez weed myself a total of 3 times yesterday - good old Tena! Last time was on a Flybe plane in their absolutely tiny minute loo - didn’t make it in time and ended up with wet trousers- they were black loose ones so didn’t show - but I smelt!!! I AM NOT GOING TO PUT UP WITH THIS.
Bladder training my a.se more like bladder misbehaving.
i am really hoping that disastrous day was all because I complied and didn’t take my morning desmopressin.
Guess what? I’m taking it this morning!!! Hoping it improves the situation. If it doesn’t I’m screwed.
If it does improves things and then if they won’t prescribe it for me I will buy it off the internet.
Aw Min, it sounds like potty training for grown ups. The bastards.
Somehow they need to get the message that if you can’t take Desmopressin every day, then you need another solution that is not bladder training. It will not work if you have a neurogenic bladder. Can’t you find some evidence on t’internet about neurogenic bladder / overactive bladder?
Make them do some testing and find a solution (botox?) to suit you.
