Desmopressin for Diabetes Insipidus User Reviews
Brand names: DDAVP, Minirin, DDAVP Nasal, Nocdurna DDAVP Rhinal Tube
Desmopressin has an average rating of 8.5 out of 10 from a total of 21 reviews for the treatment of Diabetes Insipidus. 81% of reviewers reported a positive experience, while 5% reported a negative experience.
Reviews for Desmopressin
- Anonymous
- Taken for 5 to 10 years
- May 17, 2023
"I take desmopressin because I had a brain tumor that destroyed my pituitary gland. I take three of the 0.1 mg pills morning and night. My morning dose works great with little to no complications, but it seems like my night dose if I drink any more than a bottle of water before bed, I need to use the bathroom every 20-30 minutes from halfway through the night. I haven’t quite figured out the med yet and I’ve been on it for 6 years."
- Lee...
- Taken for 6 months to 1 year
- March 8, 2020
"I have been using Demopressin spray for complications resulting from a giant pituitary tumor and it worked great (10+) to keep me from urinating every 10 minutes and controlled my unquenchable thirst however after about 6 months of using the spray my nose has become raw bleeding and crusty and I have been forced to go back to using the desmopressin pills and they don't seem to work at all .(1-)"
Frequently asked questions
- Jeniseb
- June 5, 2015
DDAVP (desmopressin) "I've been on this since 1989. The generic pill form works best! Before DDAVP I went to the bathroom around the clock and drank tons of water. The nasal spray was difficult at first since they didn't have my dosage right which I ended up in the hospital with my sodium at 119. But after the Drs got the dosage down and with the pills now, I've had no problems. Thank goodness for DDAVP."
- Island...
- Taken for 1 to 6 months
- April 2, 2019
"Been on 0.1 mg Desmopressin at bedtime for initial treatment. Had been drinking 2 gallons of water a day and still thirsty, urinating almost every 20-30 minutes literally destroying my life. Muscle cramps set in started in legs and spread to arms, hands and feet. Then I started having electric shocks in head which is quite alarming I'm sure I would have had seizures if I hadn't started treatment. Tremendous difference after first night I did not get up once to drink water or urinate. By morning cramps were 90% gone and no head shocks it was wonderful. Have to be careful how much water I drink couple hours before taking med at bedtime or my face will bloat figured this out after couple bad nights. Now working with neuroendo on whether I could benefit from second dose or splitting current dose in two. This is a nasty disease destroys lives I'm grateful I got diagnosed and treated but it was a long, hard road."
Are you taking this medicine?
- HansD
- August 4, 2021
Minirin (desmopressin) "I was one of the person testing in early 1970 Minirin as I have a familiar diabetes insipidus. I was amazed that first time in my life I don’t feel thirst nor I had to visit the toilet extremely often. Since Minirin was introduced in the market (about 1974) I am using that nasal spray. Probably I’m at the age of 74 the oldest person of that medication. No problems whatsoever up to now."
- Anonymous
- Taken for less than 1 month
- February 26, 2020
"Diagnosed a few weeks ago. On .1mg in the morning and at night. No longer having horrible dehydration episodes in the night which is great. I am however struggling to maintain the right fluid balance, particularly when exercising. I’ve had a couple of instances of low sodium from too much fluid retention which you need to be careful of. Next step is to see if I can have a couple of alcoholic drinks when I don’t take the medication during the day but still take it before bedtime. Has anyone else found any successful strategies for exercising and/or drinking alcohol without issues whilst managing the diabetes insipidus and desmopressin?"
- Tjcal
- Taken for 1 to 6 months
- October 22, 2019
"Like someone else I too used chlorpropamide for over 40 years. It worked perfectly. 1 tablet a day and that was it. It just plain worked perfectly. I could even miss a day and symptoms didn’t appear. Mylan stopped making drug and I had to switch to desmopressin about 3 months ago. Still trying to figure out right dosage. It works but wears Off in about 5-6 hours. Trying .2 instead of .1 now to see if that helps. What dosage are other people on. Did it take a while for you to settle on the best regimen for you."
- DI2007
- October 21, 2009
DDAVP (desmopressin) "I love this medication. It works fast and more efficiently than the pill form. After pituitary surgery I struggled for 8 months trying to get my bladder activity under control. I could not control my urine flow with the pills and if I was standing in line at the grocery store there was nothing I could do but face the embarrassment of having urine stream down my legs. With the nose spray I can dose right there when the urge hits and it sustains me for a few minutes until my situation is more condusive to taking care of things. The nose spray is way more predictable then the pill. Thank God I have it no matter what it costs."
- finicky
- Taken for 10 years or more
- May 8, 2017
DDAVP Rhinal Tube (desmopressin) "This is the easiest ddavp to individualize. The spray only delivers .1 ml at at time, not good for people who only require .05ml. The pill does not work....Period!. Sadly the manufacturer is discontinuing making the rhinal tube which is devistating to people like me who will now face illness due to wrong dosing or inadequate dosing."
- Tracy
- Taken for 1 to 6 months
- June 16, 2019
"I started desmopressin nasal spray in February this year after taking chlorpropamide and hydrochlorothiazide for 35 yrs. It has worked wonderfully....never wearing off. I would almost forget I had a problem but then the pharmaceutical Mylan stopped production and here I am again. I was disappointed that they stopped making the rhinal tube and I couldn’t get regulated. I’ve switched to the tablets and trying to adjust the dose to last 12 hours. I’m finding that I have loose stools and now a bladder infection that I haven’t had in decades. I’m disappointed that the pharmaceutical companies only cater to profit as there aren’t many of us. I’ve searched all over for my previous meds including Canada without luck. My last meds of over 30 yrs gave me a very normal life."
- Cajun
- Taken for 10 years or more
- March 8, 2019
DDAVP Nasal (desmopressin) "Been taking DDAVP nasal for over 15 years. Controls my CDI very well. Took Minirin before and pitressin tannate suspended in peanut oil before that. Was diagnosed with diabetes insipidus over 40 years ago."
- Anonymous
- October 13, 2022
"I got diagnosed with diabetes insipidus year ago and I am taking desmopressin cause of pituitary tumor surgery. It works in the night but on the day I still go to many times to the bathroom and I start having face flashing and light headache."
- Crystal...
- Taken for 10 years or more
- February 5, 2015
"Been on this medicine since I was 6 years old. Started on the nasal spray before the pill was invented. Found it hard to travel with because it needed to be refrigerated. Once the pill came out, I switched and never noticed a difference. Now that I am older and have a liver condition, my doctors told me to stop the medicine because it was helping my body to retain water. Now I get very little sleep and drink like a fish even though I'm on a fluid restriction. Also this med lowers my sodium levels as well due to the water retention. So if your having some of the same symptoms, please see your endocendocrinologist for help."
- Anonymous
- October 21, 2010
"I've been using Desmopressin Acetate injection for about 30 years and it has been a life saver. The tablet form does not work as well as the injection but it easier to carry with me when traveling. The injection type must be kept the in refrigerator but it is much more effective. I prefer to use the injection."
- Anonymous
- September 28, 2010
"I have been on DDAVP since 2004. I recently changed over to the tablet form. It is much more convenient to carry with me, but I have found that I have trouble having regular bowel movements and also I am having trouble losing weight. How can I lose the water weight while still staying hydrated on the DDAVP? I have heard that maybe I should limit my fluid intake. "
- ta dah
- February 28, 2009
DDAVP (desmopressin) "I've been on the nasal spray nightly for 7 years since pituitary removal surgery. It's wonderful, expensive but it works. I have found the generic version not as good, needs to be refrigerated where the DDAVP has a normal shelf life."
- Anonymous
- Taken for 10 years or more
- May 15, 2012
DDAVP Nasal (desmopressin) "I love this medication, it works a lot better than the pill! I can go about 18 hours or so whereas the pill will last only a few hours, if that!"
- chelsea
- August 17, 2010
DDAVP (desmopressin) "I was diagnosed with diabetes insipidus a little over a year ago. This medication is absolutely a life saver. I love this medication and it's the only reason that I can live a semi-normal life!"
- jay...
- April 4, 2013
DDAVP (desmopressin) "I couldn't have a normal life without it!"
- Otsut...
- Taken for 2 to 5 years
- January 9, 2019
DDAVP Nasal (desmopressin) "This is like a miracle drug to me. It works very well."
- Anonymous
- January 17, 2009
DDAVP (desmopressin) "This is a fast acting medication. It is easy to travel with and store."
- Midni...
- Taken for 2 to 5 years
- July 9, 2014
DDAVP (desmopressin) "Works great but you need to take it on time."
- pmitch
- January 20, 2009
DDAVP (desmopressin) "I like this medicine when I am on a trip and it does work fast but it's expensive."
- Anonymous
- June 4, 2009
"I have been on this for 19 years, spray first and now tablets. The generics are not as good no matter what form or brand."
Reviews may be edited to correct grammar/spelling or to remove inappropriate language and content. Reviews that appear to be created by parties with a vested interest are not published. This information is not intended to endorse any particular medication. While these reviews may be helpful, they are not a substitute for the expertise, knowledge, and judgement of healthcare professionals.
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DDAVP, DDAVP Nasal, Stimate, Nocdurna, Noctiva
"I was diagnosed with Diabetes Insipidus at 6 but was born with it. Was malnourished for years because all I wanted was fluids. A doctor finally figured out what was going on when I was 6. DDAVP can be a godsend, but the headaches I’ve seen others experience are because the medicine lowers your sodium. Therefore you have to be careful about fluid intake. I also saw someone mention something about exercise, I would recommend not taking it right before any exercise (because that naturally will lower your sodium) and then take it later in the day when you start peeing a lot again. Give it about a month to adjust. Any new exercise regimen or diet change or really anything that could affect sodium and my medicine takes me about a month to adjust to. I love DDAVP because it gives me a more normal life than I would’ve had but you do have to be careful with the dosage and fluid intake. I would not be on it if I didn’t have to be."