DI, desmopressin problems, A&E, food intolerances

DI, desmopressin problems, A&E, food intolerances

Postby member_42271 » Thu Feb 25, 2016 8:22 pm

I have recently been diagnosed with DI after having it for probably 25 years undiagnosed. I'm male, 42, married with a 2 and 5 year old children.

I haven't been able to work properly for some years, and stopped working altogether last Oct due to ill health. I do not expect to do any work again for while at present due to very poor health. GP been very helpful and supportive throughout.

I have chronic rhinitis (big nose problems due to allergies for 36 years), considerable muscle pain for 25 years, and am also intolerant of most food ingredients, many of which for as long as undiagnosed DI. Includes all gluten, citric, diary, eggs, soya, most fruit and veg, most meat (ex white meat and fish) plus various other single items such as coffee. Over some years I have had every conceivable common test (e.g. coelac) and there is no diagnosis for food intolerances. Depsite this I have worked out a diet that includes most of what I need vitamin wise each day, and take vitamin supplements.

I started on desmopressin nasal spray 2.5 weeks ago - initially 40mg per day. Very quickly this has and continues to reduce the amount I drink from 8 to just over 2 litres a day, very less loo visits etc. so it is working in one sense, but I'm just as exhausted, and even walking up a small hill I have to stop as I get out of breath still.

Within 2 days I was being so sick and felt so awful that my doctor had to come out and visit me, and requested a non emergency ambulance to A&E. They suggested 40mg was too much and suggested reduction to 20mg per day. I'm not being sick now, feel nausea at times, but overall this particular problem has reduced.

When consultant gave me desmopressin nasal spray I explained about the chronic rhinitis and he said try it and see. I can't take the tablet form as it apparently contains lactose which I am very intolerant of, so I was OK with that.

In the past few days family has had colds, including me. Not surprisingly, the desmopressin hasn't been working as well - as much as I wash and clear my nose inside with a special spray then take desmopressin, very soon nose has muscus in it and presuambly desmopressin just isn't being absorbed fully.

Now within 12 hours urnine dilute/frequent and now very big digestive problems because I'm eating a little more with desmopressin (I haven't changed what I eat). There is no way I could work with all this.

My biggest problem is the chronic rhinitis. Whilst I take pills and a seperate nasal spray for this, for 1/3 of the year it only reduces the symptoms to an acceptable tolerance, but does not get rid of them, and will increase the muscus in my nose, a bit like have a smaller cold, and I can't see desmopressin working for me.

I hear there are injections, but is that practical? Does anyone have any thoughts?

Overall, whilst desmopressin has sorted the drinking, I still feel nearly as exhausted, but I haven't had it for that long and am not expecting miricales, but I would like to go back to work during 2016 to earn money. Is this practical?
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Joined: Mon Feb 15, 2016 5:23 pm

Re: DI, desmopressin problems, A&E, food intolerances

Postby Carl » Fri Feb 26, 2016 8:52 am

Wow, I'm no expert on DI....I had it for about 4 months, but to have it undiagnosed for 25 years - I can't even imagine that!

My DI was as a result of Pituitary surgery to remove a tumour, the Pituitary gland "got annoyed" by the surgery and I took Desmopressin tablets for about 3 months and gradually tapered them off and the DI went away, "transient" they called it. I'm extremely glad to be rid of it I have to say.

I know there are different causes of DI, do you know what type you have? As you are still unwell I wonder whether you still have any other undiagnosed condition - in any case I'd think that it would take a while to get over 25 years of undiagnosed DI.

I know it has been shown that diet can greatly affect Rhinitis symptoms, but it seems you are limited with what you could include/exclude in that regard, seeing as how you already have exclude so much......

Hope you feel a bit better soon, and maybe a more expert patient on DI will be along soon.

I think it would really be worth a phone call to the Pituitary Foundation Endorcrine nurse specialist, see here http://pituitary.org.uk/support-for-you ... -helpline/

cheers, Carl
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Location: Near Southampton, UK

Re: DI, desmopressin problems, A&E, food intolerances

Postby Pat » Fri Feb 26, 2016 4:59 pm

it can take a bit to settle and manage your DI. Have you heard of Ferring DDAVP Melts? these are wafer thin melts you place under your tongue or into your gum and take a short time to relieve your symptoms of DI. The strengths are 60mcg, 120 mcg and 240 mcg. They would certainly avoid your rhinitis and hopefully as not passing through your stomach, avoid any intolerance issues - but to check of course.

The exhaustion can also take time but on a settled routine of DDAVP, this should reduce quite quickly.
I've had DI for 30 years.

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