Treatment for AVP Deficiency?

AVP Deficiency is treated by the drug desmopressin, which people usually have to take multiple times a day.

AVP Deficiency is treated with an AVP-like like drug called desmopressin or DDAVP®. This medication acts specifically on the kidneys in the same way as natural AVP, though it lasts longer than natural AVP as it is more resistant to breakdown.

A variety of different preparations are available, each of which is given by a different route: injection, nasal drops, nasal spray, tablets to be taken and swallowed, or oral lyophilisates (wafers that melt in the mouth). All are effective and it is a matter of finding the best match for each individual, based on preference and lifestyle. The spray and the tablets are popular choices. Depending on the severity of the AVP Deficiency, these are generally taken between 1 – 3 times a day; some people have to take the medication 4 times a day.

Doses vary between people, again based partly on degree of their symptoms. An ideal aim is for a you to pass around 2 litres of urine over 24 hours whilst taking your desmopressin. A good test of satisfactory management of fluid levels is to weigh yourself each morning. A varying body weight on a day to day basis can help you monitor fluid balance when you start treatment. Remember that 1 litre of water weighs 1 kilogram.

Side Effects

Treatment has remarkably few side effects. Those who use the nasal spray may find some problems with the drug working when they have a heavy cold. Some people who use the tablets, find they work less well when they have an upset stomach. Some people can run into problems if the balance of treatment means that they are taking in more water than they are passing out; this can lead to the gradual development of water overload and a drop in the level of sodium in the blood stream (hyponatraemia). This is best addressed by re-balancing treatment by looking at how much desmopressin is given and how much fluid is being taken in. You will gradually feel better once you are taking desmopressin. Overall, the treatment of AVP-D is straightforward, but if you are experiencing any difficulty controlling your AVP-D please do talk to your endocrinologist.

Please note that DesmoMelt®, although of the same preparation as DDAVP® Melt, is the product brand name for children or adults who have enuresis, not AVP Deficiency.

Generic Versions of desmopressin

There are generic substitutions available for the Ferring DDAVP® range of AVP Deficiency medications. These generic Diabetes insipidus 9 Aftercare substitutions might present some differences in patients than their usual DDAVP® brand, especially for those who have no thirst mechanism, or for children.

Adults with AVP-D may find that they ‘break through’ earlier, (with more thirst and urine output) or perhaps later (with less thirst and urine output) than they did when taking, and stabilised, on desmopressin.

Parents with children with AVP-D should look out for any change in behaviour (more/less thirst/ urine or simply a personality change – tiredness, grumpiness etc.) which might represent a change in total water balance and a change in serum sodium which will need urgent checking.

Many will find no difference, but some might. If your prescription (or your child’s prescription)is changed to a generic version, and you/your child experience less stability with the medication, then we encourage you to contact your GP or endocrinologist for advice.

Frequently Asked Questions

If I just drink less, will I pee out less?

No, without your desmopressin, you would continue to pass urine and restricting your fluid could be dangerous (unless medically supervised for a water deprivation test, for example).

What happens if my desmopressin has been kept out of the fridge?

Although intra-nasal desmopressin can be kept at room temperature for a limited period, long term exposure to temperatures above 8 °C may reduce the effectiveness. Please contact your doctor or pharmacist for advice if you are concerned that your medication has been left out of the fridge, or if the fridge is broken. Both the tablet form of DDAVP® and Desmospray are stable at room temperatures; there is no need to store these in a fridge.

What should I do if the spray is blocked or the tube is missing or damaged?

You should take the whole product to the chemist who will replace it free of charge.

Can I still use desmopressin if I have a cold or hay fever that gives rise to a blocked nose?

Only one nostril is blocked, then using the clear nostril should give the right result. If both nostrils are blocked, your doctor may recommend temporary use of the tablets.

I have been having more headaches than normal recently and seem to be putting on weight. Could this be caused by desmopressin?

If you drink large volumes of fluids and take too much desmopressin, your body may become overloaded with fluid, which could result in headaches, dizziness and abnormal weight gain. In turn, this could result in a low sodium level in the blood, which is called hyponatraemia. It is important that you contact your doctor if you experience these symptoms as you may be taking more desmopressin than you need. Your doctor will help you to find the right dose of desmopressin and will advise you on the amount of fluid you should drink.

If I can’t remember whether I have taken a dose of desmopressin, should I take another one just in case?

It is better to miss a dose than to risk taking twice the amount.

Is it safe to take other prescribed medicines alongside desmopressin?

If your doctor prescribes any medicines, you should point out that you are taking desmopressin.

If I have an upset stomach while I am on holiday, what should I do?

Mild holiday diarrhoea is no problem. Only if you have any vomiting and/or serious diarrhoea do you need to see a doctor.

Is it OK to take my desmopressin through airport X-ray machines?

Yes, it’s fine. We have more information on travelling with medicines.

What happens if I am in a hot climate or taking strenuous exercise which causes me to sweat?

As with anyone else, you should increase your liquid intake in such circumstances; your thirst should prompt you to do this.