I went to see a new edno today (my old one no longer takes my insurance). He did not like my schedule for taking my DDAVP and recommended something very different. I am just curious how other people take their medications and how much you take. I am curious to see what works for different people.
I was taking a 0.2mg pill every 4 hours (6 per day). This endo wants me to switch to taking 6 - 0.2mg pills at bedtime (around 8pm) and then 3 - 0.2mg pills 12 hours later.
He said I should be sleeping through the night (which I have not done since diagnosis) and should not feel any thirst.
I guess I have become use to some thirst throughout the day and didn’t realize I still was not taking enough DDAVP. I also thought maybe you could over dose on the DDAVP, but he reassured me that is not possible.
Thanks for feedback!!!
I am taking nasal spray, 3 times a day - 6am, 2pm, 10pm. It lasts for 8 hours. I would take extra dose if I am sick or stress or when the ddavp wears off. And this schedule work well for me.
I’ve taken pill before, but it did not work. I’d pee and drink a lot. I need a very very high dose to get normal. I was on it for 6 months. The endo then changed me to nasal.
My daughter takes 120ug in the morning and 120ug at bedtime. Our doctor wants her to have a “breakthrough” in the evening which she does, for about two hours. It can be a nuisance, depending on what we are doing, and occasionally, we slip her half her pill a little early to help her get through til bedtime. Then we just give her the remainder of her pill.
It must be different for everyone,
When I was diagnosed I was told to have the nasal spray, 2 sprays in the morning and two at night, did that for nearly 2 years but then started to only spray when needed, and can get away some days with 2 all day, my headaches are gone now and I’m in control. I wasn’t recommended the pills.
All the best with your enquiries!
Hi Heidia,
I take ddavp the spray and spray at 8pm and 9pm at night ,and i think i need more, sometimes it does not work for me, and i am so thirsty all the time. My endo doctor said to me the spray works faster than the pills. Once i take the spray no more drinking till the next morning. The spray goes directly to the brain and works fast. I go for lytes to make sure my sodium is ok and bun is all right with the kidneys. I am on this medication for the rest of my life. Last night all i did was go to the bathroom and felt the ddavp was not working for me. I need to call the doctor and see what he wants to do now and see if i need to take more spray. Well Heidia i hope this helps you a little , good luck and hope you feel better ok??? bye
kat11133
I do have mixed feelings about the spray and the pill. Correct me if I am wrong, but I have heard that if you use the spray all the time it can cause nasal irritation and also you can become immune to it. I do feel that it works faster and to be honest with a spray in each nostrial (can’t spell) it lasts longer than the pill also. I have taken the pill because of the above, plus trying to keep it refregerated with my job can be hard. I guess what I would be helpful is to find out the amount people are taking. My doctor just upped mine to 1.8mg a day. However my insurance (gotta love it) is telling me the FDA only has approved up to 1.2mg per day. Does anyone know if there is such thing as too much and how much a normal body might produce? Just want to figure out how to fight my insurance to get my medicine or if I should just switch to the spray (and how much is normal for that?). Sorry so many questions. Just a little confused. Thanks everyone, Heidi
Hi Heidia,
Well the spray you do not put in the fridge. i have no problem with it and do have some nasal congestion, but other wise no problem. My endo doc said the spray was more effective than the pill. I use x2 sprays at 8pm and 9pm and then off to sleep for me and cannot drink while taking this medication. My sister in law is a RN and she tells me everything i should ask the doc about the medication. If i become immuned to it my doc said i would take the shots for it. I am calling my endo this week to ask him if you take extra doses does anything happen to you.
I will let you know ok?? So nice talking to you hang in there ok?
kat11133
Hi! I’m new to this so please bare with me.
I have had DI for 30 years. Diagnosed when I was 14yo. I take DDAVP .2mg tabs. I generally take 4 .2mg tabs 4 times a day–give or take. I have found that stress makes DDAVP not work at times. Sometimes I think it is just an absorption issue. I take what I am perscribed and then a tablet as needed. I make sure that I need to urinate every 3 hours or so. If my urine is dark yellow I wait to take next dose. In 30 years I have found that I have to “read” my body’s signals. When I feel like I need to urinate soon after urination I know that it is time for DDAVP.
It is possible to take too much DDAVP. Symptoms include headaches, muscle cramps, dark urine. When severe seizures are possible. This hapened to me once. Very scary.
Hi all, I am on the spray. I take one spray at noon and two sprays at 9pm. I do have to keep my in the frige so it kinda limits my outside activities (i.e camping swimming ect) It does cause a little irritation. In my case some drainage. I just keep my tissues handy 
When i did the spray, I used a coffee thermos and filled it with ice.=A0 Th=
at way I could still do some outdoor things and function.=A0 Hope this help=
s.=A0=20
— On Tue, 6/9/09, renees <diabetes-insipidus-fft-9766@lists.fireflyhealth=
.org> wrote:
From: renees diabetes-insipidus-fft-9766@lists.fireflyhealth.org
Subject: Re: [diabetes-insipidus] Dosages/schedules for DDAVP
To: mlb424@sbcglobal.net
Date: Tuesday, June 9, 2009, 8:51 PM