Desmopressin (ADH) for polyuria (excessive urination)

[Thinktank]

My LLMD has prescribed me desmopressin spray to treat my polyuria. Nightly 1 spray in each nostril.

The polyuria is worst when i've an episode of excessive inflammation. He believes that's because of certain pro-inflammatory chemicals that disturb the function of the hypothalamus and that leads to hormonal imbalance.

So my problem is i have polyuria during the day, not at night. Wouldn't it be better to use it first thing in the morning?

Who else here is using desmopressin spray and does it help?

 

[heapsreal]

Also can we get feedback on sprays vs pills?

 

[MeSci]

Also can we get feedback on sprays vs pills?

The spray works faster, but carries a risk of local irritation, nosebleeds, etc. I've used metered sprays, unmetered intranasal solutions and tablets. Any nasal DDAVP formulation carries a risk of causing local damage. That said, I've never had any.

I prefer the unmetered ones, so that you can decide how much to use depending on your situation, e.g. whether you are feeling slightly or very polyuric, whether you have easy access to a toilet or not.

The intranasal solutions can be fiddly as some involve attaching the bottle to a tube, and getting the amount you want into the tube, then removing the tube without spilling the contents and getting the contents up your nose by blowing on one end after inserting the other end in your nostril!

All this rigmarole made me feel as though I was using an illegal drug!

The tablets can usually be cut in half if desired. The dosage has to be higher because more is wasted due to the route of administration. The nasal formulations get into the brain faster and may have additional beneficial effects. (Some people have said on forums that it boosts energy, but I haven't noticed this).

Tablets are obviously easier to take, especially if you are out.

I take what I need when I need it.

 

[CBS]

I've been using 'desmo' to treat my POTS for nearly 6 years. I definitely agree with MeSci that nasal sprays work (metered or not) work much faster than tablets but that dosing/absorbtion with tablets is far more consistent. That said, there are times when I might be overdoing it and need to take an additional half a tablet to stop excess fluid loss.

You asked about taking it at night versus in the morning. The bottom line is that excess fluid at night disrupts sleep. Many people take it more than once a day as it has a very short half life and so a common schedule it one dose before sleep.

Be careful with taking too much as well as not taking enough. Too much can lead to excess fluid retention and even hydrocephalus.Too little puts you on a POTS/fluid loss roller coaster throughout the day (if you metabolize all the desmopressin and begin to lose excess fluid, you will likely experience episodes of tachycardia and hypo-tension). The goal is to smooth all of that out without taking too much and retaining excess fluid.

I take it twice a day and it has led to major improvements in my health.

Best of luck,

Shane

 

[Thinktank]

@CBS, I've bad GI issues so i prefer everything topical / nasal or by injection.

I'm going to try the first dose tonight, but if it has a short half life then i don't think i'll get through the night without having to urinate. I usually wake up around 3 - 4 am to take a leak.

During the day it's more like 20 times.

What kind of improvements have you noticed from taking desmopressin?
I hope to get rid of that burning feeling in my muscles and to finally have some hydration back into my skin.

@MeSci, Irritation as in erosive? I already have bronchitis and sinusitis (without phlegm/mucous) - please no rhinitis! That's the only -itis i don't yet have...

Edit: Just remembered that some lyme patients with low ADH who take abx respond better to treatment while taking desmopressin. If that's true then i should expect a herx reaction.

Edit2: I found a blog that solely discusses the link between the lack of vasopressin and lyme disease. I still have to read the papers it links to but it kinda confirms what my LLMD told me.

http://thelymelink.wordpress.com/2013/12/23/what-it-means-to-have-no-adh-symptoms/

 

[MeSci]

@CBS, I've bad GI issues so i prefer everything topical / nasal or by injection.

I'm going to try the first dose tonight, but if it has a short half life then i don't think i'll get through the night without having to urinate. I usually wake up around 3 - 4 am to take a leak.

During the day it's more like 20 times.

What kind of improvements have you noticed from taking desmopressin?
I hope to get rid of that burning feeling in my muscles and to finally have some hydration back into my skin.

@MeSci, Irritation as in erosive? I already have bronchitis and sinusitis (without phlegm/mucous) - please no rhinitis! That's the only -itis i don't yet have...

Edit: Just remembered that some lyme patients with low ADH who take abx respond better to treatment while taking desmopressin. If that's true then i should expect a herx reaction.

Edit2: I found a blog that solely discusses the link between the lack of vasopressin and lyme disease. I still have to read the papers it links to but it kinda confirms what my LLMD told me.

http://thelymelink.wordpress.com/2013/12/23/what-it-means-to-have-no-adh-symptoms/

I'm afraid that rhinitis is mentioned as a side effect here.

I find that 100 mcg tablet usually lasts me about 8 hours. I think that that equates to 10 mcg intranasal.

Sometimes it doesn't work properly, which I think is due to my having 2 types of polyuria, the other one being caused by inflammatory cytokines, as referred to in my blogpost here.

At my worst I have to endure having to urinate every 5-10 minutes for up to 4 hours, but mercifully it doesn't happen very often, as that is hellish, especially as it usually happens at night. On good days (also quite rare) my output is almost normal with little or no desmo. Must be due to the fluctuations in ME.

The only effects I have ever noticed are related to hydration, so less polyuria and less dehydration. I have been taking it for years.

 

[CBS]

@CBS, I've bad GI issues so i prefer everything topical / nasal or by injection.

I'm going to try the first dose tonight, but if it has a short half life then i don't think i'll get through the night without having to urinate. I usually wake up around 3 - 4 am to take a leak.

During the day it's more like 20 times.

What kind of improvements have you noticed from taking desmopressin?
I hope to get rid of that burning feeling in my muscles and to finally have some hydration back into my skin.

@MeSci, Irritation as in erosive? I already have bronchitis and sinusitis (without phlegm/mucous) - please no rhinitis! That's the only -itis i don't yet have...

Edit: Just remembered that some lyme patients with low ADH who take abx respond better to treatment while taking desmopressin. If that's true then i should expect a herx reaction.

Edit2: I found a blog that solely discusses the link between the lack of vasopressin and lyme disease. I still have to read the papers it links to but it kinda confirms what my LLMD told me.

http://thelymelink.wordpress.com/2013/12/23/what-it-means-to-have-no-adh-symptoms/

The half-life of desmopressin is roughly 1.5-2.5 hours. I have found that two evenly divided doses at bed time and at noon the following day works well for me. In central diabetes insipidus (which is what we are primarily treating with desmopressin), a lot depends on how much residual ADH production you still have. People with mild episodic CDI may be able to get by with simply increasing fluids (I suspect that this is includes a lot of people with ME - but I do think that many would benefit from desmo, especially as the disease progresses).

As I mentioned above, most days I am just fine with two equally divided doses (0.2 mg BID) spaced further apart overnight (10 pm to noon = 14 hours) than during the day (noon to 10 PM = 10 hours). I suspect that this has a lot to do with metabolism although I suppose that absorption might also be effected by meals during the day (not sure this is the case but doesn't seem entirely unreasonable either).

I had a difficult time with the rhinal form (adjustable dose, pour into a tube and then blow it up your nose) although I did think it was quite a novel way to administer a med and nasal doses of either type of desmo work fast (within a minute or so) but getting a consistent effect was problematic. I suspect this was due to sinus issues that were present prior to starting desmo. I also did not like having to refrigerate it.

I can always have desmo with me and if I do push too hard I may find myself losing high volumes of fluid before my next scheduled dose, I briefly increase fluid intake and take a half a tablet.

Personally, I suspect that the digestive issues many of us have (I have had severe GI issues which turned out to to SIBO due to a loss of motility which was eventually found to be due to hypothyroidism) aren't a big deal with the oral form of desmopressin but the sinus issues made nasal forms unworkable.

Best of Luck!

 

[aquariusgirl]

Is KDM prescribing it now?

 

[MeSci]

As I mentioned above, most days I am just fine with two equally divided doses (0.2 mg BID) spaced further apart overnight (10 pm to noon = 14 hours) than during the day (noon to 10 PM = 10 hours). I suspect that this has a lot to do with metabolism although I suppose that absorption might also be effected by meals during the day (not sure this is the case but doesn't seem entirely unreasonable either).

Interesting point. I often find that a meal stops my polyuria. Not sure of the mechanism. Maybe more water is recruited to process the food.

I also find that physical activity, especially involving bending, often seems to increase urine production. I suspect that this is due to lymph being moved into the bloodstream by the skeletal muscle contractions, and thus increasing the amount of blood being filtered by the kidneys, producing more urine. People often report high urine flow after lymphatic massage, which is another way to move lymph into the bloodstream.

 

[Thinktank]

My first impression after a 20mcg nasal spray dosage around 9pm is that it works, maybe too well?

I drank approx. 300ml water after 9pm last night and didn't have to urinate until 7am this morning. This is the first time i haven't woken up at night to take a leak. Usually my morningurine is quite clear but this morning the volume was very low and concentrated.

My water intake since 7am is approx 600ml. Usually i would have gone 3 times already.

Side effects and observations i have noticed:
- Approx. 10 minutes after application i felt a certain calmness coming over me, overall feeling less wired. How can that be explained?
- Asthma increased a bit, i'm not sure if it had to do with the desmo because i encountered some other asthma-triggers as well that day. Desmo is mentioned as a trigger for asthma-sufferers.
- I woke up brain fogged but that could be because i took a double dosage clonazepam before bedtime.
- The solution doesn't sting, so far no sign of rhinitis.

@MeSci, interesting blogpost. PGE2 is highly elevated in me (IL-1 is low-normal), my LLMD told me that's causing my polyuria and neuroinflammation. Lowering PGE2 should help with the symptoms so he prescribed me berberine 200mg. Unfortunately it lowers my blood sugar level leaving me brain fogged, lazy for the rest of the day. Perhaps it would be wiser to start with a lower dose or take it with a high carb meal?

You mention reservatrol. Approx. 4 years ago i took a high dose grape seed extract for a few months which contains reservatrol and other anti-inflammatory chemicals. The inflammation subsided almost completely and I never felt and looked beter in my life. I have not been able to reproduce the same effect with grape seed extract due to bad GI issues.
I am going to trial a high quality reservatrol product soon.

Another thing i suspect i have is pyroluria which causes excessive urination as well and is very common in lyme patients. I'm extremely deficient in Zinc and most of the minerals are kinda borderline-lowish in RBC.
I've ordered a Kryptopyrrole testkit which should be delivered any day now.

@CBS, thanks for sharing your experience. I will too try to spread out the dose, 2 X 10mcg instead of 1 X 20mcg.

@aquariusgirl, for me he did because of my bad neuroinflammation.

 

[heapsreal]

@CBS and others here, what is the actual difference between desmopressin and florinef. As far as i can tell they both can reduce urinary output and hence maintain blood volume. Desmo seems to be mentioned more with reducing urine output and florinef is mentioned as a sodium retainer, 2 sides of the same coin??

 

[heapsreal]

May have answered my own question with this link i found. I have read previously that desmopressin was basically aldosterone but the below link mentions florinef is a synthetic aldosterone.

Fludrocortisone is the synthetic equivalent of aldosterone, the most important mineralocorticoid in the
human body. It only has minor glucocorticoid action. Administration causes fluid retention and thus
raises blood volume. Hypovolemia is very common in CFS/ME24 and patients appear to have lower aldosterone levels than healthy controls.25 A Japanese case report describes a CFS/ME patient whose
illness went into remission for six years when she suffered from hyperaldosteronism due to an adrenal
adenoma.26
Measuring aldosterone levels is probably not necessary; the symptoms are more useful in determining
whether a patient might benefit from fludrocortisone. Most people with CFS/ME suffer from orthostatic
hypotension, sometimes so severe that the patient cannot even stand upright. Even in milder cases treating
the problem can relieve the symptoms in general. Other circulation problems may also stem from
hypovolemia.
Not all studies have shown benefit from fludrocortisone in CFS/ME, but one got very impressive results,
even a full remission in some of the patients using fludrocortisone in combination with other treatments
for orthostatic hypotension.27 The treatment is also endorsed by the CFS/ME specialists Richard Podell28
and Charles Lapp.29 Dr. David Bell has found fludrocortisone beneficial for 1/3 to 1/2 of his patients,
noting that it is most helpful for adolescents and the lesser ill.30
Many CFS/ME doctors recommend beginning the treatment with a very small dose, such as only one
fourth of a tablet for the first four nights and then increasing the dose by one fourth of a tablet every four
days. Andrew J. Wright, however, does not recommend increasing the dose beyond one fourth of a
tablet.31 Some doctors think it is important to always take the medication at the same time of the day.

Potassium supplementation may be warranted and it is important that the patient ingests plenty of fluids
and an adequate amount of protein. If the drug causes headache or stomach upset, taking it with a glass of
water may help. Fludrocortisone can cause depression (sometimes even severe) or an excessive surge in
blood pressure. CFS/ME expert Paul Cheney does not recommend fludrocortisone and believes it can
actually exacerbate the illness in long–term use.32
Fludrocortisone is available in the United States, the United Kingdom, Canada, Australia and some other
countries. Like the other corticosteroids it is very inexpensive. The potassium supplementation will likely
cost more, though it is by no means expensive either.

http://www.brokenmarionettebook.com/rbabridged.pdf

 

[heapsreal]

http://www.antiaging-systems.com/84-florinef-fludrocortisone
Above is a cheap low dose florinef. these come in 20mcg pills, its my understanding that they normally come in 100mcg doses. SO might be handy for those sensitive to medication doses or those slowly tapering up or down off their florinef on the guidance of their doctor.

 

[MeSci]

My first impression after a 20mcg nasal spray dosage around 9pm is that it works, maybe too well?

I personally would only take that high a dose if I were going out somewhere without easy access to a toilet for a number of hours. That's what was prescribed for me at first (or the oral equivalent - 200 mcg), but I found it unsuitable as after about 8 hours I needed more, so now take on average 100 mcg oral/10 mcg nasal 3 times a day. It reduces output/frequency to a more normal/manageable level.

As the nasal form works so quickly, it's easy to top the dose up if you find it isn't enough after maybe an hour or so. You mustn't take too much. You can find dosage and other info at many sites, e.g. this one. (This is for the intranasal solution; they have info on the other formulations/routes of administration as well).

@MeSci, interesting blogpost. PGE2 is highly elevated in me (IL-1 is low-normal), my LLMD told me that's causing my polyuria and neuroinflammation. Lowering PGE2 should help with the symptoms so he prescribed me berberine 200mg. Unfortunately it lowers my blood sugar level leaving me brain fogged, lazy for the rest of the day. Perhaps it would be wiser to start with a lower dose or take it with a high carb meal?

I don't know anything about berberine. There is info here. I am low-sugar/low-grain so avoid high-carb meals. My blood sugar is very stable most of the time, at least since I went lowish-carb.

You mention reservatrol. Approx. 4 years ago i took a high dose grape seed extract for a few months which contains reservatrol and other anti-inflammatory chemicals. The inflammation subsided almost completely and I never felt and looked beter in my life. I have not been able to reproduce the same effect with grape seed extract due to bad GI issues.
I am going to trial a high quality reservatrol product soon.

Glad the grape seed extract helped you. I haven't tried it but might consider it. If you are at all prone to gut problems I would avoid any resveratrol supplement that might also contain emodin. Now Foods natural resveratrol almost-certainly contains it, although it's not mentioned on the label, but it is a very common contaminant because these supplements are made from Japanese knotweed, which contains emodin. It messed up my gut.

 

[CBS]

My first impression after a 20mcg nasal spray dosage around 9pm is that it works, maybe too well?

I drank approx. 300ml water after 9pm last night and didn't have to urinate until 7am this morning. This is the first time i haven't woken up at night to take a leak. Usually my morning urine is quite clear but this morning the volume was very low and concentrated.

My water intake since 7am is approx 600ml. Usually i would have gone 3 times already.

Side effects and observations i have noticed:
- Approx. 10 minutes after application i felt a certain calmness coming over me, overall feeling less wired. How can that be explained?

<snip>

@CBS, thanks for sharing your experience. I will too try to spread out the dose, 2 X 10mcg instead of 1 X 20mcg.

Hi ThinkTank,

It sounds like the desmo did exactly what it should have done. You mentioned that "calm" feeling. I suspect that what you were experiencing is you body actually calming down. Increased blood volume should slow your heart rate (just as hypovolemia raises HR). Secondly, increased fluid volume means more blood to your periphery and that means that you're probably a bit warmer which can be perceived as calmer. Both these sensations mechanisms are quite common in people with DI who take desmo. The reverse of this is that if you "run out" of desmo before your next dose the first sign will be that you'll likely feel anxious. When this happens, stay calm and immediately increase your fluid intake (only for a very brief period) and take your desmo. Even now I'll get distracted and miss a dose only to notice an hour or two later that I'm feeling anxious, chilled, etc. (basically how I used to feel all the time before being diagnosed with CDI). The second thing I'll notice is the third trip to the bathroom in 40 minutes.

When you are on the correct dose of desmo, things can be pretty stable (I may have to supplement my regular dose with 0.1 mg once every 4-8 weeks). Spitting .2 mg into two .1 doses may or may not work as .2 mg a day might not be enough (although it is a reasonable place to start). If it isn't enough, you'll feel like you're on the rollercoaster I referred to earlier (calm/warm - anxious/cold/tachy (you'd actually be a bit shocky) - calm/warm - anxious/cold/tachy, etc.). Talk to your doc about checking your sodium levels several times a week for the first month or so to help you get the hang of when things are in balance and to reassure him/her that you're not being over treated. Also, keep an eye on the color (and smell of your urine) which you mentioned. Lastly, check your ankles for swelling (another sign you might be over treating).

@heapsreal - Sounds like you found some info on Florinef. Florinef and desmo can both impact fluid volume but they do it in very different ways and if the issue is low ADH, only desmo actually addresses all issues. As you know, Florinef increases aldosterone which leads to fluid retention (may be compensatory to some degree by increasing vloume but it doesn't actually stop excessive loss). Florinef also does nothing for the loss of vascular tone associated with ADH deficiency. Ironically, the other primary treatment for POTS, midodrine treats the loss of vascular tone but does nothing to address either low volume or fluid loss. In patients with CDI, desmo stops excessive loss and increases vascular tone (its use in severe trauma victims to slow blood loss is becoming standard treatment).

Hope this helps.

 

[aquariusgirl]

@Thinktank..tnx the reply. are you paying out of pocket for desmo. if so, can you share how much it is running you? tnx.

 

[heapsreal]

http://www.alldaychemist.com/catalogsearch/result/?q=desmopressin

 

[CBS]

At the risk of sounding paternal, I personally wouldn't take this drug without close supervision and counseling by a doctor that is familiar with it. I've seen well meaning but naive docs send patients into a dangerous spin because they didn't know what they were doing and they had no idea of what it feels like when you get too much or you start a roller coaster like cycle by under treatment. Desmopressin has been taken off the market at times because manufacturers were not willing to accept the risk of over use (a little more is not always better). Parents were treating enuresis in their kids with desmo and when it wasn't completely effective they upped the dose (completely shutting down their kid's kidneys) and several died or were severely and permanently disabled from hydrocephalus.

In ME patients there is a lot going on and I can guarantee that without monitoring your sodium levels, you will have a very hard time distinguishing too much from too little (when in doubt first stop taking it and then drink only to thirst). Also, keep in mind that when desmo is taken off of the market, it creates a precarious and potentially life threatening situation for people like my self who would have died without it (losing 24 liters of fluid a day simply drinking to thirst without it!).

 

[heapsreal]

@CBS 24litres a day wow. I thought 9litres was bad but doc just brushed me off when I told him. Electrolyte tests he said I was slightly dehydrated, um daa. I think I'm doing OK at replacing what I lose as I drink a lot of fluid.

I have tried a nasal spray which helped but again it's costly, be nice if my doc would just prescribe me desmo as it would be cheaper?

Trt seemed to help initially but over time it just stopped working and my testosterone returned to crap as did my trips to the toilet increased once again. If I can get my doc to treat me on this then maybe it can give me that last bit of pep I need? ?

 

[CBS]

@CBS 24litres a day wow. I thought 9litres was bad but doc just brushed me off when I told him. Electrolyte tests he said I was slightly dehydrated, um daa. I think I'm doing OK at replacing what I lose as I drink a lot of fluid.

I have tried a nasal spray which helped but again it's costly, be nice if my doc would just prescribe me desmo as it would be cheaper?

Trt seemed to help initially but over time it just stopped working and my testosterone returned to crap as did my trips to the toilet increased once again. If I can get my doc to treat me on this then maybe it can give me that last bit of pep I need? ?

Nine liters a day is still three times the accepted cut off for triggering additional testing (3000 mL). You need a second opinion from someone who specializes in pituitary/hypothalamic disorders and who has seen patients with CDI (probably less than 5% of endocrinologists). If you are only drinking to thirst, your serum electrolytes (primarily sodium) will be normal to slightly elevated as you would simply be replacing the fluid that was inappropriately lost.

Your experience with the nasal spray mimics my experience closely. Three months of good control with rhinal delivery (blowing desmo up my nose). Then it started to lose its effectiveness,gradually at first and them it seemed to be of little benefit. I asked my endo if I could switch to tablets and I was back in very good control within a day. With the tablets, I've now remained in very good control since 2009. In the last few years, research has been published showing that tablets offer better control (but they offer lower profits for the pharmas). Presently, oral tablets that dissolve are being tested as they work faster and have less issues with overlapping food intake. That said, my endo and I are not impressed with a lot of the new/fancy forms of desmo as they are developed with kids and enuresis in mind and not the relatively rare patient with CDI (for whom refrigeration is a challenge - not just taking one dose before bed) and for whom a delayed effect of 30 minutes to onset becomes less critical as the goal is a steady blood level to control fluid loss through out the entire day (not just a one off dose at bed time).