ShupeJL10

So my blood volume is very bad with pots, so much that 2 liters of iv fluids a day aren’t doing the trick to keep me functional (we are thinking leaky vessels, damaged glycocalyx, etc) so my dysautonomia doctor is putting me on more fludrocortisone 0.1mg. Can anyone tell me about your experience with salt and water intake while on this medication? I also may combine it with desmopressin as that is something my doctor suggested since my volume is so horrible. If anyone can describe your experience please respond!

@DADofPotsSonhow is your son doing now? Thanks for your response. And yes I responded to pistol in that usually saline has been better for me but I’m willing to give lactated ringers another shot 

@Pistolwow that’s very interesting! For me the lactated ringers get peed out more! Or at least they used to I haven’t used them in a while. I think it was because it has way less salt and that’s what helps keeps the fluid in the vessels for me, but now even shorter with saline. I will still ask my doctor to try LR and see how it goes

Hello everyone, so my pots is very severe where I have to do iv fluids at home otherwise I cannot function at all, and I’m still not really functional with them. But the more I’ve done them the more I notice they don’t work as well, it’s like my body cannot hold onto the fluids or they leak somewhere. I’m not sure how else to improve my plasma volume I’m very scared. I’m on fludrocortisone already and desmopressin sometimes but I’m not a big fan of it. Any advice is helpful. Looking into trying albumin if it can be approved 

@Sarah Teethanks for your support. Yeah average pots patient is 13% low according to many autonomic doctors I’ve talked to so I’m double and in both RBC and plasma:/ which can be common too. Your dad is smart! We are trying to get albumin approved but it will take months. And we try fludrocortisone and desmopressin together but that’s causing issues if it’s own, so I’m lost I just do daily iv saline but it doesn’t last. I’ll give that video a watch now:)

@Sarah Teethank you so much. And yes my doctor wants to do epo but not before my plasma volume comes up. Both my red cell volume and plasma volume are about the same and if we just drastically increase red cell he said that’s a problem 😕

So I have tried everything. Fludrocortisone made me pee more, desmopressin only lasts a few hours and still don’t feel great in that. Right now I’m doing IV saline 2-3 times a day and that’s the only thing to make a dent and it’s for a very short period of time. Via a Daxor volume study I have BOTH low red cell and plasma volume of about 25%. It’s getting very scary as nothing is working for me. I’ve tried to get of albumin and have struggled to. If anyone can let me know of other things to try or maybe certain combinations, I would be very pleased

thanks

@Sarah Teehow often are you allowed to do the iv albumin?

So as some of you may know I started desmopressin today along with my fludro for blood volume. Well I certainly pee less but I’m still very thirsty on it, and I don’t want to lower my sodium by drinking too much. Any recommendations? How much should I be drinking? I’ve had about 16oz in 3 hours which is less than I usually drink by a lot. And my urine is dark yellow which I’m sure is normal on desmo since you hold in water. Let me know how to tell when to drink more or when to notice low sodium signs. I appreciate it!

josh

@RecipeForDisasterhow close together do you do your iv fluids to your DDAVP?

@Garden Galim so glad you found a dose that works for you! I wonder why twice a day didn’t work. I’m starting off low at 0.1mg with 0.1 of fludro as well. I’m also worried about how it will interact with iv fluids but we’ll see!

@Sarah Teewow amazing info!! You’re so informed haha. And my doctor is trying to get albumin approved for me but it’s quite hard to do. I had an infusion of it once with blood as well but the effects only lasted a day or two sadly. Do you mind if I send you a message?

@RecipeForDisasteryesh I did have the blood volume test. It’s so weird I’m low equally on red cells and plasma almost and iv fluids don’t bring up the plasma volume for too long. That’s why I’m adding the desmo and fludro. They want to put me on epogen too. I’m trying to find the root cause to this cause it came out of nowhere during Covid, and I tested positive for mold toxins too. How was Ivig for you? Didn’t help me at all. Does iv iron help? My ferritin is quite low 

@MikeOim

not totally sure! My doctor just thinks I have it but I have no idea how to test for it 

@RecipeForDisasteroh I gotcha! Yeah I do iv fluids every day with my picc and I was found to be low on both red cells and plasma, we are still trying to figure out why, but even the IVs aren’t enough. I’m gonna be on a fludro+desmo combo hoping that helps 

For some reason I can’t hold onto the fluids I drink and need iv fluids at home. But even those don’t do the job. I was doing some research on here and am about to try a desmopressin + fludrocortisone combo to see if that will help. Does anyone else on here feel like their vessels are leaking or have been diagnosed? And if so what are the treatments? I saw a few years ago octreotide really helped someone with low volume and leaky vessels 

Had anyone had the Daxor blood volume test done? If so what did your results look like and what kind of treatments have helped? I had bad deficiencies in both plasma and red cell volume and am bed bound