Has anyone with DI (neurological/cranial) noticed that the DDAVP (solution) is starting to wear off? eg. always thursty/always needing to go to the toilet. I have been told by the doctor that i should continue self managing but due to my low sodium am getting mild seizures! Has anyone noticed this? or experienced this? if so please help!! (also have had Glandular fever which may have contributed?). also do you know what is the most effective treatment ie. tablet, solution, spray or injection have u tried these and what is the difference?
Thnks!! Sacha
Sacha,
DDAVP does degrade over time. Also, if you shake the bottle a lot, and it is
kept in a hot spot, its effectiveness is lessened.
DDAVP, when fresh, always works great for me, in the nasal spray format.
Hope this helps,
Stephanie
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Sacha, why have you got low sodium? Do you have another problem which causes this?
I’ve had DI for 40 years so have been through quite a few of the different types of treatment, as you no doubt also have, but even the one which was supposed to be refrigerated I found I could keep in the car through summer (very hot) and it would often still work, but I found it to be unpredictable.
When the non refrigerated one became available I honestly didn’t notice any difference in how long it lasted.
If you’re having a problem with low sodium, you might find it best to use either the solution with the rhinyl tube, or the tablets, so you can take a tiny dose where necessary.
I found this useful because for 20 years I was on very large doses of blood pressure drugs (including a diuretic would you believe) and found that I had difficulty with fluid retention during the day because of them. What I found most useful was letting the desmopressin wear off overnight (when your body’s horizontal it’s a lot easier for it to equalize all the fluid in your body).
Otherwise I sometimes found I had the bottom half of me with fluid retention & the top half dehydrated!
Maureen.
sacha diabetes-insipidus-cpt7680@lists.careplace.com wrote:
A couple of years ago, my DDAVP would wear off sooner then it was supposed to so I went to see my endo. I can’t remember exactly what he’d told me but he said something about an “escape period,” that the medecine did that at times. I was using the spray twice a day. He then decided to increase my dosage to 3 times a day. He wanted me to spray twice in the morning and once at night. So that’s what I did. Now I don’t use the spray unless I REALLY need to. It tends to wear off whenever it wants to. Most of the time, in the middle of the night. I’m so used to it that it doesn’t even bother me anymore. I don’t even know how many times I use the spray now…
I also have low sodium problems and when the DDAVP wears off, that’s when my body goes all limp and I get dizzy. My doc told me to try to get on a higher sodium diet. Seems to work fine for me. Hope that this info might help you a bit with your situation.
Nini> To: anbsolutions@hotmail.com> From: diabetes-insipidus-cpt7680@lists.careplace.com> Subject: [diabetes-insipidus] DDAVP Wearing off?> Date: Tue, 5 Feb 2008 07:03:42 -0500> >
Thank-you everyone for your help! I will definately take all this useful advise on board! As I live in QLD Australia I am unsure whether or not we will/can get the generic variety DDAVP which does not need to be refrigerated? Does anyone have any info on this? I am looking into the low sodium at the moment and trying to eat HEAPS OF SALT!! thank-you everyone!!!
I don’t think you can get the generic variety - only Minirin (I’m in Melbourne), but you can get the one with the little rhynl tube, where you can give lower doses more frequently, or the tablets, where you can do the same thing, but they don’t start working for an hour or so.
Your low sodium is a concern. You need to have your sodium checked when the Minirin has worn off, at a time when you’re not eating lots of salt, and drinking enough to not be too thirsty. Under those circumstances it shouldn’t be below about 140.
It’s quite a problematic combination of problems (as you’ve already discovered) so you really need to get it checked out.
Maureen.
sacha diabetes-insipidus-cpt7680@lists.careplace.com wrote:
Yes I am going back to my doctor soon to try and get it all worked out. Thank-you for all the advise! all the information really helps as many of the doctors just don’t fully understand it all!