ReginaH Posted April 27, 2020 Report Share Posted April 27, 2020 Fudrocortisone vs Desmopressin? What have you had a better experience with? Which gave less side effects? Which helped you retain fluids better? Was either a life changer? Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted April 28, 2020 Report Share Posted April 28, 2020 I had a very hard time getting desmopressin - but it makes a much bigger difference for me than fludrocortisone did, and the best part is, I can take it as needed instead of having it built up in my system. The side effects are less with desmopressin, too. If I take too much (I have a script for 0.2mg twice a day, which I’ve never gotten up to) I get headaches and weird feelings, but it helps my BP and gives a nice boost. I wouldn’t call it a life changer, but it’s about 1/3 as effective as a liter of IV fluids. It’s great to have in a pinch. I didn’t have great benefits from fludrocortisone, mostly lots of edema and migraines, but most others seem to do well on it. I do take licorice root in its place, which helps without side effects. Quote Link to comment Share on other sites More sharing options...
isa5 Posted April 28, 2020 Report Share Posted April 28, 2020 After I failed a trial of Florinef (it had bad mood effects for me), my doctor switched me to desmopressin, and I find it quite helpful. I take 0.1mg at night, and retain fluid much better as a result. In the AM I also start with a liter of oral rehydration salts (initially these tasted disgusting, but I've adjusted), which wards off any of the worries about hyponatremia that sometimes come up with the desmopressin. Together they've worked well for me. Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted April 29, 2020 Report Share Posted April 29, 2020 I should add that I take in 15gm salt daily. I want to eat it plain! I am trying to avoid taking DDAVP every day - I just use it when I’m in really bad shape or I need to have a decent day. Quote Link to comment Share on other sites More sharing options...
ReginaH Posted May 17, 2020 Author Report Share Posted May 17, 2020 So, I started doing Saltstick vitassium on top of my 3L of water with liquid IV and other electrolyte tablets and I'm overall doing much better but not perfect. I would only do Fludrocortisone at this point if it would mean I could intake less water every day. If that's not the case, then I may as well keep doing what I'm doing? Quote Link to comment Share on other sites More sharing options...
ReginaH Posted May 17, 2020 Author Report Share Posted May 17, 2020 On 4/28/2020 at 7:08 AM, RecipeForDisaster said: I had a very hard time getting desmopressin - but it makes a much bigger difference for me than fludrocortisone did, and the best part is, I can take it as needed instead of having it built up in my system. The side effects are less with desmopressin, too. If I take too much (I have a script for 0.2mg twice a day, which I’ve never gotten up to) I get headaches and weird feelings, but it helps my BP and gives a nice boost. I wouldn’t call it a life changer, but it’s about 1/3 as effective as a liter of IV fluids. It’s great to have in a pinch. I didn’t have great benefits from fludrocortisone, mostly lots of edema and migraines, but most others seem to do well on it. I do take licorice root in its place, which helps without side effects. My blood pressure is normally like 106/73, as an example. So, it's not low but it's not high either. My issue is more so narrow pulse pressure. Does licorice root widen pulse pressure/help with blood volume retention or does it just raise BP? I ask because I tried midodrine and it just raised my BP but left it narrow, so I'd get readings like 116/94. I wouldn't want to try licorice root and have that happen again. Quote Link to comment Share on other sites More sharing options...
yogini Posted May 17, 2020 Report Share Posted May 17, 2020 1 hour ago, ReginaH said: My blood pressure is normally like 106/73, as an example. So, it's not low but it's not high either. My issue is more so narrow pulse pressure. Does licorice root widen pulse pressure/help with blood volume retention or does it just raise BP? I ask because I tried midodrine and it just raised my BP but left it narrow, so I'd get readings like 116/94. I wouldn't want to try licorice root and have that happen again. Licorice root and florinef work very similarly. Did a doctor tell you to be concerned about your pulse pressure? I've had BPs 90/60 or 100/70 and have been told that is normal, including the pulse pressure. Quote Link to comment Share on other sites More sharing options...
ReginaH Posted May 17, 2020 Author Report Share Posted May 17, 2020 1 hour ago, yogini said: Licorice root and florinef work very similarly. Did a doctor tell you to be concerned about your pulse pressure? I've had BPs 90/60 or 100/70 and have been told that is normal, including the pulse pressure. My narrowed pulse pressure is what tipped everyone off to my pathology; that my aldosterone levels are low because my angiostensin ii levels are elevated, causing low blood volume. The low blood volume sets off the catecholamines alarm, raising heart rate. Check out this study from 2018: https://www.researchgate.net/publication/324234951_Angiotensin_II_Type_1_Receptor_Autoantibodies_in_Postural_Tachycardia_Syndrome You can think of it as a follow up to:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3050076/ After this amazing study:https://www.ahajournals.org/doi/10.1161/01.cir.0000160356.97313.5d You might be best off reading them in reverse order. Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted May 17, 2020 Report Share Posted May 17, 2020 I wish someone would care about my pulse pressure or really anything else it drops further when I stand or even sit up. I can get PPs near 10 and it correlates well with how badly I feel. The licorice has definitely increased my volume a bit, as does DDAVP. Quote Link to comment Share on other sites More sharing options...
Pistol Posted May 17, 2020 Report Share Posted May 17, 2020 10 hours ago, ReginaH said: I ask because I tried midodrine and it just raised my BP but left it narrow, so I'd get readings like 116/94. I wouldn't want to try licorice root and have that happen again. @ReginaH - I would be more concerned about the systolic hypertension in 116/94 than the low PP. I get readings like that and it is usually a sign of low blood volume for me ( although my BP fluctuates extremely ). When I become symptomatic and my BP shows systolic hypertension with low PP I get IV fluids and all is well. ( I have a port and get IV fluids at home, so it is easy for me ). I certainly do not recommend for you to get IV fluids but rather want to point out that low blood volume could be the culprit and could be worsened by fludrocortisone. Quote Link to comment Share on other sites More sharing options...
Pistol Posted May 17, 2020 Report Share Posted May 17, 2020 3 minutes ago, RecipeForDisaster said: I wish someone would care about my pulse pressure or really anything else it drops further when I stand or even sit up. I can get PPs near 10 and it correlates well with how badly I feel. I know you have tried IV fluids before and they have helped. With readings like that ( and those unbearable symptoms ) it may be time for an infusion??? Are you still able to get them where you live? Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted May 17, 2020 Report Share Posted May 17, 2020 Sigh. I cannot get a hold of the doctor promised he’ll write my IV fluids (since my other doctor got fired by the hospital). I have 2 emails and 4 calls in over the past month. None have been returned. I think they’re actually closed because of COVID. Their office is awful but he is wonderful. I have ONE day of therapy left and I’m saving it for a really bad time. It sucks!! One new doctor I have agrees I need the fluids but "we don’t prescribe them". Most of my others also refuse as a rule. I have unreturned phone calls to 2 others just in case. I’ve had PPs of 8 before. Quote Link to comment Share on other sites More sharing options...
p8d Posted May 18, 2020 Report Share Posted May 18, 2020 Ok, for those of you that have more brain power than me, after reading the most recent article should we try Losartan? Anybody tried it recently? Experiences? I have read many of the old threads and like everything it seems like a mixed bag of experiences. I know I have the alpha a-1 antibodies. Thanks. Quote Link to comment Share on other sites More sharing options...
Pistol Posted May 18, 2020 Report Share Posted May 18, 2020 @p8d - if your doc recommends taking it I guess you should give it a try. I have not heard either good or bad about it being used for HPOTS, so I guess it is the usual hit-and-miss thing. Quote Link to comment Share on other sites More sharing options...
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