I have noticed with my daughter that on hot days her DDAVP medicine doesn’t seem to work as well. So I was wondering if anyone knows if being in the sun or heat is worse for you with diabetes insipidus?
Thanks,
Heather
Heather,
I’ve noticed the same. I think it is just because we are more dehydrated,
moving around more, and needing more liquid. Also, if you take liquid DDAVP and
you carry it around, or have it in hot weather, it “denatures” which means
"loses it’s effectiveness."
Hope this helps,
Stephanie
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Do you use DDAVP or the generic desmopressin acetate? The generic requir=
es
refrigeration while the DDAVP does not. You’re right about the hot weath=
er
so I try only to carry it with me when travelling or when I know I won’t =
be
home for my next dose. =0D
=0D
Thanks,=0D
Robyn=0D
=0D
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From: Mskewlgal=0D
Date: 06/09/07 12:56:28=0D
To: robbier44@verizon.net=0D
Subject: Re: [diabetes-insipidus] Sun=0D
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Yes, it is. The drug breaks down in hot weather and loses some
effectiveness. I try not to carry it with me unless I’m travelling or kn=
ow
I won’t be home for my next dose.=0D
=0D
Robyn=0D
=0D
-------Original Message-------=0D
=0D
From: DvlGirl21=0D
Date: 6/9/2007 10:16:25 AM=0D
To: robbier44@verizon.net=0D
Subject: [diabetes-insipidus] Sun=0D
=0D
The generic Desmopressin Acetate needs refrigeration while DDAVP does not. I try not to carry it with me unless I’m travelling or I know I won’t be home for my next dose. You’re definitely right about the heat.
Robyn
Hi… I use the generic version. It’s okay to be stored at room temperatures up to 77 degrees F. It will travel at 86 degrees. I used to use the name brand,which had to be refrigerated. I get my prescriptions filled by mail and my pharmacy would always send the name brand overnight UPS, packed in a small styrofoam box crammed full of ice packs. the generic now just comes in a plain cardboard box without any ice packs. I just keep mine stored in the bathroom,right by the a/c grate. when the furnace has to be on,i’ll move it to a cooler place. I also keep a bottle in my desk at work. I work on the ground floor and it stays cool in my office.
When I know I’m going to be out most of the day during hot weather, I put my medicine in a small cooler with an ice pack or two.
I worry more about accidentally freezing it than having it get too hot.
Hi guys, i just joined the forum and glad to see so many ppl sharing their experience.
I’m wondering what medicine is “DDAVP”?
I just found out that i have DI a month ago and i’m taking this “Minirin” pill, it gave me a lot side effects such as gastric, nausea.
What medicine do you guys recommend me to take?
Thanks.
I did not know that! I am on the generic now and so is my daughter. We have different insurance so we use different pharmacies and neither one says it should be refrigerated. Plus she works in a mail order pharmacy, we will check on that. You would think when the generic form came out, and we switched, they would put that on the bottle or at least the computer print out. I thought mine was working a little better later, maybe it’s because of cooler temperatures.
I have also noticed during my step classes at the gym that I get VERY overheated compared to everyone else. (People older and younger) Even though the room is air conditioned I can not do the class without being in front of a fan. I have assumed it’s because of the CDI. Anyone else with that sort of problem?
Thanks
There are 2 different kinds of generic. One that needs to be refrigerated and another that doesn’t need to be. If you need to keep yours in the fridge then it should say it on the label. Either way, I like the brand better because it doesn’t have the twist caps. I can’t tell you how many times the cap came loose and I’d lost all of its contents. Unfortunately, my insurance only covers the generic. > To: anbsolutions@hotmail.com> From: diabetes-insipidus-cpt4132@lists.careplace.com> Subject: Re: [diabetes-insipidus] Sun> Date: Sun, 28 Oct 2007 17:14:19 -0400> >
I use DDAVP as well, but I have always taken the pill form and you don’t have to worry about refridgeration with that. I always keep nasal in my fridge at home incase I can’t keep down the pill for some reason though.
That’s good to know. I’ve been on the nasal spray for what, 4 years now and there are times when it doesn’t last me that long. I remember one time I used the spray 5 times within 24 hours. That was pretty bad. Alcohol definetely makes it worse so I don’t drink anymore. How big is the pill???> To: anbsolutions@hotmail.com> From: diabetes-insipidus-cpt4132@lists.careplace.com> Subject: Re: [diabetes-insipidus] Sun> Date: Fri, 2 Nov 2007 17:12:26 -0400> >
The pill is very small. It is not hard to take. If you take 0.1mg it is a round pill and the 0.2mg is a oval pill. Since you are use to the nasal I would ask your doctor to put you on 0.1mg and take it when you feel you need it until you realize how often you are taking it and then get on a schedule (say you feel DI thirsty every 3 hours start taking a pill every 2.5 hours). Once you get that schedule going ask to go up to the point 2 and just double the time in between your pills. That is how my doc finally got me regualted. I take 0.2mg every 8 hours and then another as needed if I am bad with my sodium intake during the day:)
Dear friends, I hv CDI for many years. It was a miserable day for me today. I went to the hospital, 25km from home, to get my medication supply. I didn’t know the road to the hospital is under construction. I had to make 2 km rounds to access to the hospital…not familiar with the area …missed the junction…I got to make one more round.
After I got the supply, I made may way home. But the road to exit hospital is also closed for construction…oh my…I have to find alternative road…and I am not familiar with the area. I got to make 2 times 3 km rounds to eventually made my home.
It was a hard day, driving under the sun, in the traffic jam, with the extra kms. Even though I brought drinking water with me, it turned warm because of the hot sun.
When I reach home, I grabbed the freezy water from the freezer (which I would normally keep it ready), took out my clothes, shakey and trembling, ran for the shower…a reaaalllyyy strong cool shower…Ohhhh God…what a reliefffff…
Take care to all fellow friends.
Aleenna
i actually noticed that when i tan in the sun, i feel much better, maybe the sun has some vitamins that help for di?
anybody noticed this???