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Guidance for management of Desmopressin and the importance of BREAKTHROUGH. Developed by: Dr. Cihan Atila, MD, PhD at University Hospital Basel, Department of Endocrinology, Diabetes & Metabolism and Pat Gildroy, Moderator of the “Got DI?” Facebook Group

While desmopressin is a wonderful medication, it can also be very dangerous if not managed well. Prior to having Arginine vasopressin deficiency (AVP-D, formerly central diabetes insipidus- pituitary related) our bodies were really good at monitoring our fluid levels in order for our blood to have the right consistency for our organs to work correctly. If we needed more fluids, we got thirsty ; if we had too much fluid, we’d need to wee.

But with AVP-D, our bodies no longer do that because our bodies no longer produce the hormone arginine vasopressin that signals our kidneys to keep and recirculate the fluids we need.

Desmopressin is like a miracle drug but it can also be dangerous because it keeps in most of the fluids we take in. It can be too easy to dilute your blood if you continue to take your desmopressin and drink too much, as that can dilute your blood over time which is very dangerous. Many members weren’t coached on breakthrough and ended up in the hospital and even ICU.

We basically have the same amount of sodium but the amount of fluid can change the proportion of sodium which must stay a the healthy level in order for out bodies to function correctly. It’s like a cup of fluids if you add 1/4 teaspoon of salt, there is a certain proportion of sodium to water. But if you have a quart or liter of fluid with the same amount of 1/4 teaspoon of salt, the proportion of salt is MUCH lower. That’s what can happen with our blood. We can dilute it from taking too much desmopressin and then drinking too much. BUT we can safely avoid that with breakthrough.

Diluting our blood is often called hyponatremia which is low blood sodium, although all of our critical electrolytes are affected this can cause seizures, strokes, brain damage, organ shut down and worse. To make matters worse, most emergency and hospital physicians don’t know how to make sure to SLOWLY raise our blood sodium to avoid additional brain damage. They should be giving us small doses of desmopressin to slow down our urinary output if we are hospitalized with hyponatremia or we develop it in the hospital. Many patients have been denied desmopressin in the hospital because they don’t understand that it is a life saving medication to keep us from severe dehydration. So… ALWAYS have desmopressin with you, especially if you are hospitalized. The hospital may not have it in the pharmacy.

THIS IS HOW TO STAY SAFE WITH BREAKTHROUGH

Many doctors don’t know how to coach patients to. mange their AVP-and desmopressin safely.

* When desmopressin is working it is very important to limit drinking to when you are actually thirsty. Don’t drink because of a dry mouth (sip), out of fear, out of habit, at meals, or to be social unless you are actually thirsty. When you are having breakthrough you can drink because you are actually thirsty!

* Most members have breakthrough once a day, or at least several times per week. That is easier than doing what some docs recommend of going an entire day once a week with no desmopressin.

* Breakthrough is delaying a dose until you release any extra fluids you may have on board, just in case you took in a bit too much.

*You know it should be safe to take the next dose after breakthrough when:

1. You run to the loo several times with a full bladder in about an hour or so,

2. Your urine is nearly colorless (no longer concentrating as it does when desmopressin is working).

3. Your BIG thirst is just starting up (you are starting into dehydration).