Nin Posted May 9, 2021 Report Share Posted May 9, 2021 I was thinking of trying fludrocortisone/florinef but reading about the side effects it sounds brutal. Also it says do not have any vaccine whilst taking fludrocortisone as it can effect brain and spinal cord. Common side effect heart failure! Its just seems to have a lot of very bad side effects which will make me worse off 😕 Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted May 9, 2021 Report Share Posted May 9, 2021 I have been on it for 15 years and it changed my life for the better. I have minimal to no side effects (weight gain). My doctor did not stop it for my COVID shot or flu or shingles. It may be different for you, but I would certainly encourage you to try it if your doctor is recommending it. All of these meds list dire consequences if you read the warnings. You can also get struck by lightning or, technically, your heart could stop when you faint. Life isn't riskless. I would educate yourself to know what to look for, but don't let anxiety bring on symptoms. Go in thinking, "This is the med that will give me my life back" and it just might. I hope this is the one for you. Good luck. Quote Link to comment Share on other sites More sharing options...
Nin Posted May 9, 2021 Author Report Share Posted May 9, 2021 Wow 15 yrs! Well thats reassuring. I can only try and give it a go. Quote Link to comment Share on other sites More sharing options...
cmep37 Posted May 11, 2021 Report Share Posted May 11, 2021 Fludrocortisone was one of the first things I tried and had absolutely no impact for me - no side effects, no improvement in symptoms. I gave it a go for about 3 months and then stopped as I couldn't see any point in taking it. Having said that I do know a number of people who it helped enormously so if you haven't tried it it's certainly worth a shot. Remember you will be taking a very small dose of it (the most I was on was 0.3 mg)- a lot of the side effects seem to happen if you take larger amounts. Quote Link to comment Share on other sites More sharing options...
Pistol Posted May 11, 2021 Report Share Posted May 11, 2021 Florinef will only help CERTAIN POTS patients. It usually does not help for HPOTS, since the mechanism behind this type causes excessive vasoconstriction. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted May 19, 2021 Report Share Posted May 19, 2021 Interestingly hyper pots patients have the lowest blood volume according to a paper by Stewart and Medow (low flow variant) and a more recent one from Vanderbilt that showed salt loading in H POTS reduced norepinephrine levels more in H POTS than other forms. Dr Raj suggests that many POTS patients have characteristics of more than one presentation so perhaps its a spectrum rather than separate etiologies? Florinef made me jittery for 3 days then i felt amazing. More recently after 11 years and my first hyperadrenergic episode in nearly two decades i tapered hoping my weird vision might improve but it didnt. Quote Link to comment Share on other sites More sharing options...
Pistol Posted May 19, 2021 Report Share Posted May 19, 2021 28 minutes ago, ramakentesh said: Dr Raj suggests that many POTS patients have characteristics of more than one presentation so perhaps its a spectrum rather than separate etiologies? I have thought the same thing. Initially I think they named it postural orthostatic tachycardia syndrome b/c it appeared the most obvious symptom shared. Now it appears that we have similar symptoms with completely different mechanisms, as well as different severities. So approaching it as a spectrum rather than a syndrome seems to make sense. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted May 26, 2021 Report Share Posted May 26, 2021 What would people say is a low dose for fludrocortisone when starting it? Quote Link to comment Share on other sites More sharing options...
cmep37 Posted May 26, 2021 Report Share Posted May 26, 2021 I think I started on 0.1mg and increased the dose by 0.1mg every 3 weeks to a maximum of 0.3 mg. Hope it works for you - some people seem to do really well on it. Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted May 26, 2021 Report Share Posted May 26, 2021 I started at .1mg and stayed at .1mg except when I have to go under anesthesia. Then we increase to .2mg the day before and for 3 days after. I split a pill and do .15mg for the next 2 days, then go back to my .1mg. Quote Link to comment Share on other sites More sharing options...
Nin Posted May 26, 2021 Author Report Share Posted May 26, 2021 Doctor said to up the salt tablets to 2 tablets 3 x a day. If this don't work then try fludrocortisone. I find taking just 2 salt tablets dries my lips out and my face. Don't know how I will feel taking all those Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted May 27, 2021 Report Share Posted May 27, 2021 Try Aquaphor for your lips. I keep Aveeno moisturizer on my face. And I exfoliate. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted June 2, 2021 Report Share Posted June 2, 2021 @KiminOrlando and @cmep37, do you find there is an optimal time of day to take it? I am thinking first thing in the morning, maybe before you get out of bed? Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted June 2, 2021 Report Share Posted June 2, 2021 Yes, I take it early and drink a gatorade first thing. Then salt pills and water. Then another gatorade. I felt better within 48 hours. Quote Link to comment Share on other sites More sharing options...
cmep37 Posted June 2, 2021 Report Share Posted June 2, 2021 I was told to take it in the morning too Sarah - I took it with breakfast rather than before I got out of bed though as I struggle with nausea and found it upset my stomach if I didn't take it with food! Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted June 3, 2021 Report Share Posted June 3, 2021 Thanks, that's great. My endocrinologist may be starting me on this next week so I appreciate knowing about how everyone manages it. Fingers crossed! Quote Link to comment Share on other sites More sharing options...
cmep37 Posted June 4, 2021 Report Share Posted June 4, 2021 Good luck - I know it has really helped a number of people! Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted June 20, 2021 Report Share Posted June 20, 2021 @Nin, I've been taking a small dose for a fortnight now. I did have mild side effects in the first week: nausea and a metallic taste in my mouth. I also felt non-specifically "stirred up" physically, in the way that you often do when starting a medication. In the second week, all this disappeared. To be honest, I struggled with the side effects the first week. Even though I would classify them as mild, coming on top of everything else, I found it hard, especially with chugging down extra fluids. (I have semi-failed bowel surgery that already makes me bloated.) I actually stopped taking it for two days – I know this is bad – and had to give myself a pep talk and get a few hugs from family to get back on track. When I did restart, the side effects were less and then dwindled to nothing. My endocrinologist started me on half a tablet (50 micrograms). She was concerned it might raise my blood pressure. It did not. (I don't have BP or heart rate abnormalities but my blood pressure is borderline high.) I am to have a blood test on Monday to check potassium levels etc. If all looks good, she will increase the dose. If my potassium is down, I will start a supplement and she will look at raising the fludro in another couple of weeks. Just my experience but I hope it is helpful for you. Sarah (in Australia) Quote Link to comment Share on other sites More sharing options...
Nin Posted June 20, 2021 Author Report Share Posted June 20, 2021 19 hours ago, Sarah Tee said: @Nin, I've been taking a small dose for a fortnight now. I did have mild side effects in the first week: nausea and a metallic taste in my mouth. I also felt non-specifically "stirred up" physically, in the way that you often do when starting a medication. In the second week, all this disappeared. To be honest, I struggled with the side effects the first week. Even though I would classify them as mild, coming on top of everything else, I found it hard, especially with chugging down extra fluids. (I have semi-failed bowel surgery that already makes me bloated.) I actually stopped taking it for two days – I know this is bad – and had to give myself a pep talk and get a few hugs from family to get back on track. When I did restart, the side effects were less and then dwindled to nothing. My endocrinologist started me on half a tablet (50 micrograms). She was concerned it might raise my blood pressure. It did not. (I don't have BP or heart rate abnormalities but my blood pressure is borderline high.) I am to have a blood test on Monday to check potassium levels etc. If all looks good, she will increase the dose. If my potassium is down, I will start a supplement and she will look at raising the fludro in another couple of weeks. Just my experience but I hope it is helpful for you. Sarah (in Australia) How do you find it helps? Is walking easier? I struggle to walk far, I get so exhausted. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted June 21, 2021 Report Share Posted June 21, 2021 @Nin, I am not a typical case – treatments seem to work for me once (one day), then stop working. Unfortunately, it seems the fludro is following that pattern too, but I'm not giving up yet. My endocrinologist will increase the dose this week if my blood test is okay. On the day it worked, I felt a lot better. Not 100%, but it really took the edge off my fatigue. I also didn't have the afternoon slump I usually get when I get so exhausted that I have to lie down. I was a bit worried I might get bad side effects, so I didn't go out for a walk, but I pottered around the house and garden and did some cooking and vacuuming with no trouble. I wish it had kept working like that, but after the first day I have been up and down a bit. Some days it seems to help a little bit, other days I feel the same as before. I am not typical though, so please don't be discouraged by my experience. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted June 26, 2021 Report Share Posted June 26, 2021 Just a quick update: I am now on one tablet per day (up from a half). The metallic taste is making a reappearance but I am hoping it will go. I forgot to mention another side effect: two small bruises on my leg, and two sore spots, one on my leg and one on my hand near the knuckle. I don't normally get this, and I hadn't injured myself to account for it, so I'm pretty sure it's the fludro. I'm not worried, just keeping an eye on it. The bruises went away. The sore spots are sticking around, but they only hurt if I press on them. If it gets more widespread I'll consult with my endocrinologist. Just wanted to mention this in case it is useful for someone else down the line. Quote Link to comment Share on other sites More sharing options...
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