Florinef plus desmopressin (DDAVP)

[bombsh3ll]

Hi does anyone out there have any experience combining these two meds for volume expansion/retention, particularly if you are known or suspected to be hypovolaemic or deficient in the relevant  hormones on testing?

I am wondering about this combination as I clinically fit the picture of hypovolaemic POTS, pee ~6L per day and my aldosterone and ADH are both well below range. I can produce ADH under hypertonic saline test conditions, but do not do so in real life as an (appropriate) compensation for mineralocorticoid deficiency which makes me tend towards low sodium. 

I have had bad side effects with standard doses of florinef, whilst desmopressin tabs at very low doses really help reduce the polyuria but not my orthostatic intolerance. These do not cause me any noticeable side effects but drop my sodium further on blood tests which makes regular use too dangerous without mineralocorticoid replacement. Taking extra salt doesn't help because my body can't retain it. 

I was therefore thinking that a very low dose of the two together may help safely expand my volume with reduced side effects, and would really like to hear from anyone else who has been on both of these meds at the same time. How did it work out for you?

B xxx

 

[Pistol]

@bombsh3ll - are you seeing an endocrinologist? I m wondering if your POTS symptoms could be a result of the volume depletion from excessive urination rather than actual autonomic dysfunction? 

[bombsh3ll]

11 hours ago, Pistol said:

@bombsh3ll - are you seeing an endocrinologist? I m wondering if your POTS symptoms could be a result of the volume depletion from excessive urination rather than actual autonomic dysfunction? 

Hi yes I have seen one, he wasn't actually that helpful although he did give me two hypertonic saline tests for diabetes insipidus. The first was inconclusive, the second negative. He advised me to only take desmopressin in low dose and very occasionally at night as I tend to run hyponatraemic. He offered me a 3rd hypotonic saline test saying there was still about a 20% chance I have some degree of central DI, but I declined as it was brutal and I don't see how it would change my situation if I can't take very much of the treatment for it. 

I have had polyuria all my adult life, but I had my first major postpartum haemorrhage at 18 and another life threatening one 14 months before the onset of POTS, so there is the potential for some pituitary damage (Sheehan's syndrome). My MRI of my pituitary was normal however and other pit hormones also all normal. 

He was an elderly professor, very old school and at one point suggested the benefits I initially derived from licorice root (which promotes volume expansion) could have been psychological - I later found out he had personally published several articles many years ago on its mineralocorticoid effects, along with a no longer used drug carbenoxolone. Well yes I was euphoric taking it because I was no longer lightheaded & passing out & could walk!! 

He also wrote off my undetectable renin and aldosterone as the result of a "typical Western diet" - without asking me anything about what I ate. I asked why everyone else eating this presumed diet can stand up except me, for which he had no answer. 

I haven't been back since because I got my main objective from his clinic which was a referral for health board funding to attend the autonomic clinic in London. 

I do think that most if not all of my problems stem from volume depletion, but the problem is I had horrible side effects with fludrocortisone, the only drug available to replace aldosterone, and without mineralocorticoid activity it is dangerous for me to take desmopressin.

I am going to have my follow up call with the autonomic unit next week with the results of the tests they did, and discuss a retrial of fludro +/- desmo at a very low dose. I never tried a quarter of a tablet and always had licorice root in my system when I took it previously, so it may be worth revisiting. 

Still, my problem could be autonomic as it is the ANS which tells the kidney to produce renin, leading to the volume retaining RAAS cascade, and similar hormonal deficits have been found in POTS patients in various studies, but it is definitely an angle I would like to pursue further. 

B xxx

[Trying]

Our daughter is taking .1mg of fludrocortisone in the morning and .1mg (half) of the .2 tablet desmopressin at night.

She had negative test for DI several years ago. Without the desmo, she was using restroom 3 or 4 times a night, now 2 times since she started desmo a few months ago. She goes around 9 before falling asleep and then around 4am.

I can't say the combo works for her because she had a tachycardia episode recently and has not had any increase of energy. 

[bombsh3ll]

19 hours ago, Trying said:

Our daughter is taking .1mg of fludrocortisone in the morning and .1mg (half) of the .2 tablet desmopressin at night.

Thanks, it is really helpful to hear from someone with experience of the combination. I am guessing she has to have frequent electrolyte monitoring on the two?

I also value the uninterrupted sleep desmo gives me when I take it, but I am sorry it is not helping with her main symptoms. 

My only problem is being unable to stand without severe presyncope though so different symptom pictures. I wish all of us could find something that helped. 

B xxx