FWIW/FYI: Desmopressin Results

Archives1

Staff member
I had an earlier thread about Desmopressin, and I'll start this new one for those interested.

Last night I took my first .1 mg of Desmopressin. It did not help as I peed four times during the night. I know it was the first night, but thought I'd share how/if it works. I did sense a mild headache.

Stay tuned and chime in if this thread interests you.
 
Don’t know about this med, but many meds have to build up in your system before they are effective.
 
Agreed, I just wanted to share with folks so they might appreciate the progress or lack of progress as I use the med. I'll report and night #2 tomorrow.
 
@fleemoore Thank you for sharing. I didn’t know headaches were a potential side effect. I already have a headache most nights by bedtime so that might mean I couldn’t try Desmopressin. Well, I guess one can always try! I look forward to your further posts.
 
After night #2 using Desmopressin, I peed twice which is better than my usual 3, 4, or 5 times. Stay tuned for night #3.
 
@Rothpirate16 Hmmmm. I don’t eat much; maybe that gives me headaches be sure my sodium is off. I should probably drink Powerade every day.
 
So it's day five of my Desmopressin dosing. The prescription was confusing to me. The doctor told me to take one pill an hour before bed with a sip of water. The dosing from the pharmacy, via the doctor, said to take two pills twelve hours apart. The Internet info states to not drink a lot of water after taking a pill. My question was, which was correct and if I take one during the day, and I'm a perfuse perspirer (sorry for the TMI), how do I do that and not drink lots of liquid?

I talked to the pharmacist and he said to take the second pill during the day and drink as I usually do. I'll start that today.

In the meantime, while taking the pill before sleeping, I still pee 3 to 5 times per night.

I'll report back once I take two pills a day.

I hope this has value to someone here.

BTW, Happy Pi Day to everyone who has a birthday today:)
 
Snow, blood sodium issues mostly come from dilution or concentration. I have diabetes insipidus which is a pituitary issue causing inconsistent levels of adh hormone. If you are retaining water the sodium becomes too dilute, dehydrated means more concentrated. Dietary sodium does not have a big impact.
 
So it's day six of my Desmopressin dosing. My doctor called me yesterday to discuss what the bacteria is that seems to be causing my UTIs - a whole separate issue. During that conversation, he told me I should not follow the directions given to me by the pharmacist, one pill every twelve hours. Instead, I am to take two .1 mg pills with a sip of water at bedtime. I did that and still had to pee three times during the night. However, the amount was much less than usual. I think that was progress. Tonight I'm hoping to be awakened only once.

For those following this, please stay tuned.
 
@fleemoore Thanks for the update. I’m glad you talked to your doctor. Sometimes they have to write a prescription a certain way to get your insurance to pay for it, but they will give you different directions for you to actually follow.
 
Day 8 or 9 (?) of Desmopressin. The doctor had me up the dosage at night from .1 to .2 a few nights ago. I still pee three to four times per night. Nocturia continues to wreck my daytime energy levels. This is a medicine that does not have to be in your system to build up so I guess it's not working for me. It's time to research Oxybutin which the pharmacist asked if I had tried.
 
@fleemoore I highly recommend avoiding Oxybutynin. It totally demolished my teeth. I went from having had two cavities in my entire life to having at least one cavity in every tooth within two years of taking Oxybutynin. I quit taking it, but it doesn’t matter; the damage is done. It causes extreme tooth rot. I’ve since had to have 19 crowns, and even under the crown, my tooth continues to decay at the gum level because of the damage done to my gums by the severe dry mouth that Oxybutynin causes. I’ve only ever seen a couple of people on this forum say that it works for them. They also claim it doesn’t affect their teeth. It will eventually. If you’re going to try something, I don’t recommend taking a medication that’s almost 100 years old, with tons of crappy side effects. I would take something more modern like Myrbetriq that has fewer side effects, and the ones that it has, are less severe. Ultimately, any bladder medication that’s trying to dry your bladder out is going to dry your mouth out also.

Common side effects of oxybutynin

These common side effects of oxybutynin affect more than 1 in 100 people:

-dry mouth
-headache
-feeling dizzy, sleepy, or a spinning sensation (vertigo)
-diarrhoea or being sick (vomiting)
-constipation
-farting and burping (wind)
-stomach pain
-dry eyes
-blurred vision
-problems or pain when peeing, and not being able to empty your bladder
-inability to sweat and regulate your own body temperature

There are many more. You can read about them here:


Oxybutynin gave me worse pee urge pain than I regularly even have. The reason it messes up your vision is because it makes your eyes so dry they can’t see.
 
I highly recommend just pursuing sleep medications, and wearing diapers at bedtime. Have you tried Botox? That’s my real savior.
 
@snow, Thanks for your feedback. I'll check out the link.

I tried Myrbetriq, but it didn't help. I also tried Gentesa (Vibegron) and it didn't work either.
 
@fleemoore Sorry the meds aren’t helping. I had high hopes for you and desmopressin. Insurance-wise, I had to try at least five medications before they would approve Botox.
 
You must log in or register to post here.
Back
Top