Day without desmospray

[member_31784]

Just seen a new registrar who wanted to know if I did a day a week without my desmospray. I asked her which day of the week she would choose to pee every 20 minutes!! I know the recommendation is to have a day off a week but wondered how many of us do. I don't automatically take my dose but wait until get fairly uncomfortable.

Interested to hear how others manage their condition and particularly if anyone had any adverse affects by continuously taking dose. Kare

[Coco]

Having a day without desmopressin sounds ridiculous. Not just inconvenient but I not believe it can be good for you as you're basically putting your kidneys on pause. the only likely reason why you have been recommended to do this is probably to ensure there isn't a fluid build up. I did have this to a small degree when i first started on desmopressin as I was prescribed two sprays once a day. I went to my endo about 8 months later as I was feeling a bit low physically and mentally. Blood tests showed my sodium was low so I had to reduce to one spray which lasts about 16 hours. I do not always wait for my desmopressin to wear off but I try to make sure that I do allow it to wear off at least 3 times a week. This works for me, I feel well and my sodium levels are normal.

[Anna]

I miss a dose 1 or 2 times a week, usually the morning one so I get a good nights sleep! I've not skipped a whole day since needing more desmopressin, as would feel dreadful. I try to do it when I'm at home for obvious reasons - near a loo and free drinks to quench the thirst! However I will take a small dose before the evening if symptons get very bad.

[Tracey]

Why would you even want to try a day off a week, surely as long as you have a breakthrough is all that matters

[Bill]

I don't use the spray I take the tablets. I usually take 2 at 9am 2 at 4pm and 2 at 10pm . These times are approximate and seem to work pretty well for me, although for some reason in the evening I quite often feel the tablets effect wearing off at 8.30 - 9pm. Don't know why this is because I usually drink less in the evening than I do during the day.

[member_6464]

Hi member_31784,

I've to cut my Desmospray once a week because I've got very low blood sodium. Usually wait until the weekend
and it's not a day I look forward to. Helps to balance the blood electrolytes. Sometimes don't get a chance to
reduce because I'm busy on both days and find experience to problematic and restrictive during the week.
Perhaps you should ask the endo why you need to do this, there must be a reason?
In any case, my sympathies go out to you.

John

[DerryAcro]

hi folks
just reading through some off the posts. The advice i was given was to miss 1 DOSE on a particular day off my choice, per week. I choose first dose on a sat morning and have being doing this now for just over 16 years. thankfully i have have no issues (just pee a lot more for a few hrs) by lunchtime i take spray and all good from there onwards blood sodium levels have never being a problom.
My daily dose is 3puffs 3 times a day.