Fludrocortisone stopped working?

[andybonse]

Hey,

Has anyone been on Florinef for so long and it stopped working? I've been on it 3-4 years and it's gradually got down to the point where my symptoms are back to how they used to be.

My sodium was 144, potassium 3.1 and aldosterone 108 when it was working, now sodium is 139, potassium 4.4 and Aldosterone 270. All indicating florinef isn't doing as much?

Maybe it's because I switched from the fridge version to the out of fridge version?

I just don't get it, can it stop working? The body get used to it?

[dancer65]

Hi

My first med was florinef I have low bp and I was loosing fluid ,  in the beginning it helped a bit so they kept upping my dose to 3 tablets a day as every few months i would improve then decline rapidly  again, this went on for a year .after another six months finally I was referred to a pots consultant . He switched me to midrodine which has improved my pots as VVS a lot. He did mention when we were chatting that he found florinef effects seemed to diminish over time on many patients.  

Just my experience though , hope you find a solution

[Guest ANCY]

I have been on florinef for 5 years. It doesn't work for me if I am not getting in enough fluids and sodium. That may mean more fluids amd sodium than the regular population. 

[bombsh3ll]

I couldn't tolerate fludrocortisone due to side effects and it also didn't seem to help me, but I take Licorice Root as an alternative. It basically does the same job but by a slightly different mechanism - tricking your own cortisol into acting like a mineralocorticoid. I don't produce any detectable renin and my aldosterone is always below the bottom of the range, so some form of mineralocorticoid replacement is essential for me. 

I have sadly found the same thing in that it was absolutely fantastic for about a year and then over time I must have built up a tolerance to it. Either that or the underlying condition has worsened and/or I have become progressively more deconditioned due to being chair bound. My endocrinologist suggested either a) upping the dose - which is not really sustainable, gave me worse headache when I tried and would be above the recommended safe dose, or b) taking a holiday from it to desensitize the pathways it works on, and hopefully it would become effective again. 

I am afraid to do the latter as for all I know I would be bedridden without it and I have children depending on me. Also studies I have read indicate that whilst rodents can survive indefinitely with extra salt if they have no endogenous mineralocorticoid production, the same in dogs and humans is rapidly fatal. 

As you do have some natural aldosterone production, maybe the drug holiday suggestion would be an option for you to discuss with your consultant, although it may be pretty miserable in the short term. 

Do let us know if you come up with a solution to this. It is something I have wondered about a lot as Addison's patients don't seem to need progressively escalating doses or develop tolerance, and likewise for me the licorice root is replacing a deficient hormone rather than being additive.

I have however read a couple of studies which show the volume expanding effect of fludrocortisone is generally transient, and where it remains effective over years this seems to be as a result of adrenergic receptor sensitization on blood vessels, ie a vasoconstricting effect, which I certainly don't need. 

B x

[DizzyGirls]

My daughter seems to be having more symptoms.  Seeming to need more florinef, but she isn't able to tolerate more than one tablet a day.  She's tried midodrine, but, like the extra florinef, causes really bad headaches.  I can tell when her florinef is wearing off, her bp goes way down and she's been passing out a lot in the later afternoon and evenings.  She's been on it since 2015.

[Salt Sunflower]

I know this thread is old, but just wanted to add in my 2 cents in case other people come back to it!

I have been on Fludro for nearly 3 years and my sweet spot has been 3/4 of a tablet (my body weight is quite low). I actually would notice the effects diminishing every few months until I discovered that for some reason my tablets (the refrigerated version) lose their efficacy after about 8-10 weeks, instead of lasting the recommended 3 months. I now just swap my bottles over at the 2 month point and it's helped so much. It's been a game changing med for me.

I also heartily agree with ANCY in that the meds did very little for me till I upped my salt and fluid intake (Salty chicken broth as my main fluid each day is what I tolerate best- adding salt to my food just didn't make a difference).

 

[Sarah Tee]

If only we had access to blood volume measurement, we could find out more about what is happening when people undertake volume expansion measures or take a volume-expanding medication such as fludrocortisone.

There is a new(ish) simple way to measure blood volume, and a European company has released a medical apparatus using this method. It’s done with carbon monoxide rebreathing and a couple pf simple blood draws. I hope these will soon be popping up around the world in autonomic labs and hospitals in general. (Blood volume emasurement can also help in treating kidney and heart disease, polycythemia vera, and a couple of other things, so it would be a useful addition to any larger hospital.)

It would also be a boon to dysautonomia research. A couple of labs with these could firm up the evidence for hypovolemia in POTS and other orthostatic syndromes in a jiffy.

If you have a doctor with a nice lab who looks like they can afford new toys,, do mention it to them 🙂 Apparently it’s not very expensive compared to the nuclear medicine option.

The European company is called Detalo Health. NASA also has one of these machines, although I think it might have been made in-house.