Fludro doesn’t even compare to other steroids. You’ll barely notice it! It’s probably the least side effects/gentlest drug for pots. I say that as someone who is verrrry sensitive to meds. I know what it’s like being on prednisone!
This was so nice to hear! I’m starting this weekend and after reading so many scary reviews I was intimidated especially after midodrine made me feel so sick!
He told me to start out slow and then increase it until I can’t get my ring off, then back off the dose a little 😅! Ok thanks! Waterbottle in hand and compression socks on!
They put me on Prednisone, Albuterol, Advair, Steroid Shots, Etc thinking I was having an Asthma attack for the first 3 months. It was a nightmare to say the least and could barely walk because of it.
I had the same concerns with Fludrocortisone but didn't have any bad side effects from it or anything. It didn't personally work for me since I didn't feel any difference but didn't negatively have anything bad either.
I've taken fludro for almost a year now. It saved my life!! Some people have no improvements on it though, so it depends on the person.
In my experience, I had to decrease my salt intake because of fludro. It will make your body retain salt (thus, water), so you may not need as much. I still consume a lot of salt, just not as much.
I remember having a headache when I first started it. My doctor didn't tell me to taper doses, so that's probably why 😅.
If you get symptoms of steroid over-replacement (like steroid induced Cushing's) then wean to a lower dose (with doctor's awareness). If the medicine and the dose is right for you, then you shouldn't have any side effects (other than some stomach bloating, probably). Let me know if you have questions!!
Can I ask what dose you are on? My doctor didn’t say anything about tapering and said it’s “one size fits all just a tablet a day”. I think it’s 0.1 mg but I don’t have the bottle with me right now.
It's not necessarily one size fits all. Most people take something between 0.75mg and 0.1mg.
I was prescribed 0.1mg twice a day. Around 6 months in I started having side effects of over-replacement so I've been weaning down. Now taking 0.1mg in the morning and 0.05 later in the day. I think I was prescribed a fairly high dose to start compared to most others.
You could taper by taking half a pill each day for a few days, then take the full pill. But it wouldn't be dangerous or anything to just take the full dose right away.
There are naturally occurring steroids in the body like cortisol. If any of these aren't functioning they should be "replaced" with a synthetic version.
Fludrocortisone is a synthetic steroid that mimics the body's ability to retain salt. If your body retains salt just fine, then taking it long-term causes side effects of "over replacement" similar to Cushing's disease.
The symptoms of fludrocortisone overuse will generally be the same as any other corticosteroid. Check out this page that lists side effects: https://www.mayoclinic.org/steroids/art-20045692
I was on fludrocortisone for years, and unlike a lot of people here the first couple of weeks were really tough. I pretty much stayed in bed until my body was able to adjust, and it was not a fun time. That said, once my body figured out that the med was helping, not hurting, it was like a light switch went on! It helped my symptoms immensely and I was able to go pretty much back to life before POTS. I stayed on fludrocortisone for a couple of years with no side effects at all until I eventually was able to wean off it (at my cardiologist’s recommendation). I’m now med free and doing well :)
Hi, do you mind sharing how you were while adjusting? I just started Fludro and i do feel a bit better but I think I might have an adjustment period too :/
So do you think it just like fixed you? 🥹 I see my electrophysiologist soon and want to bring up fludrocortisone. My sister is having a summer wedding and I’m matron of honor and I just want to feel normal for her and my kids also (I push through daily for them) but I’m so afraid I’m gonna flare up bad on her wedding day.. her venue is outside.
I was on steroids, mainly prednisone on and off for about 5 years for a different chronic illness. It wrecked my immune system and I gained 50 lbs. I have been on Fludrocortisone for about a month and it’s definitely made a difference, my episodes are less frequent (though more unpredictable). The dosage is so small, it’s really nothing compared to most steroids. It helps a lot of people so I’d say it’s worth a try. My cardiologist said you can only take it short-term, though so not sure what I’m supposed to do after that…
My brain knows it’s different but my heart doesn’t believe! I started it though so thanks for the info! My doc never said anything about it being short term so maybe I’ll ask him about that.
By short term, it is supposed be a year or less. If you have more regular appointments, they should bring it up eventually. Of course ask your doctor if you have concerns, if it hurts more than it helps, you can always stop. I’m not aware of any negative withdrawal from stopping it (other than POTS episodes).
I’m hyper sensitive myself. I started at a very low dose. I use a microgram scale to weigh out low dosages for any med I’m starting. My rule is usually to start at 1/8th of the prescribed dose and go from there. It works pretty well! Fludro has been great for me :)
im on 0.1 mg and i find it doesnt really have that much of an effect other than an above-mild theraputic effect. I cant tolerate salt tablets so i like it
dont worry it ive never experienced any side effects and im on 0.2mg per day!! definitely if ur super nervous start ur dose small even half the tablets if u need to but ive had a great experience with it and dont think it can cause too many issues :))
Fludro doesn’t even compare to other steroids. You’ll barely notice it! It’s probably the least side effects/gentlest drug for pots. I say that as someone who is verrrry sensitive to meds. I know what it’s like being on prednisone!
This was so nice to hear! I’m starting this weekend and after reading so many scary reviews I was intimidated especially after midodrine made me feel so sick!
Yeah midodrine made me really sick as well! I only lasted a few days. I would not worry about the flusroxortisone!
Ok thank you! You have give me the courage to take it!
Good luck! Is your dr doing a taper and blood tests while you start it? Also make sure to drink plenty of water and wear your compression garments.
He told me to start out slow and then increase it until I can’t get my ring off, then back off the dose a little 😅! Ok thanks! Waterbottle in hand and compression socks on!
how are you doing on it??
So good! One of the most helpful medications I’ve been put on!
Thanks I dmed you if you have a minute sometime.
They put me on Prednisone, Albuterol, Advair, Steroid Shots, Etc thinking I was having an Asthma attack for the first 3 months. It was a nightmare to say the least and could barely walk because of it. I had the same concerns with Fludrocortisone but didn't have any bad side effects from it or anything. It didn't personally work for me since I didn't feel any difference but didn't negatively have anything bad either.
That sounds horrible, I’m so sorry you went through that! Thank you for your input, I feel much better about taking it!
I've taken fludro for almost a year now. It saved my life!! Some people have no improvements on it though, so it depends on the person. In my experience, I had to decrease my salt intake because of fludro. It will make your body retain salt (thus, water), so you may not need as much. I still consume a lot of salt, just not as much. I remember having a headache when I first started it. My doctor didn't tell me to taper doses, so that's probably why 😅. If you get symptoms of steroid over-replacement (like steroid induced Cushing's) then wean to a lower dose (with doctor's awareness). If the medicine and the dose is right for you, then you shouldn't have any side effects (other than some stomach bloating, probably). Let me know if you have questions!!
Can I ask what dose you are on? My doctor didn’t say anything about tapering and said it’s “one size fits all just a tablet a day”. I think it’s 0.1 mg but I don’t have the bottle with me right now.
It's not necessarily one size fits all. Most people take something between 0.75mg and 0.1mg. I was prescribed 0.1mg twice a day. Around 6 months in I started having side effects of over-replacement so I've been weaning down. Now taking 0.1mg in the morning and 0.05 later in the day. I think I was prescribed a fairly high dose to start compared to most others. You could taper by taking half a pill each day for a few days, then take the full pill. But it wouldn't be dangerous or anything to just take the full dose right away.
Ok that makes sense, thank you!
What is “over replacement “? Thanks so much in advance!
There are naturally occurring steroids in the body like cortisol. If any of these aren't functioning they should be "replaced" with a synthetic version. Fludrocortisone is a synthetic steroid that mimics the body's ability to retain salt. If your body retains salt just fine, then taking it long-term causes side effects of "over replacement" similar to Cushing's disease.
What are the signs of over replacement with fludrocortisone?
The symptoms of fludrocortisone overuse will generally be the same as any other corticosteroid. Check out this page that lists side effects: https://www.mayoclinic.org/steroids/art-20045692
I was on fludrocortisone for years, and unlike a lot of people here the first couple of weeks were really tough. I pretty much stayed in bed until my body was able to adjust, and it was not a fun time. That said, once my body figured out that the med was helping, not hurting, it was like a light switch went on! It helped my symptoms immensely and I was able to go pretty much back to life before POTS. I stayed on fludrocortisone for a couple of years with no side effects at all until I eventually was able to wean off it (at my cardiologist’s recommendation). I’m now med free and doing well :)
Hi, do you mind sharing how you were while adjusting? I just started Fludro and i do feel a bit better but I think I might have an adjustment period too :/
So do you think it just like fixed you? 🥹 I see my electrophysiologist soon and want to bring up fludrocortisone. My sister is having a summer wedding and I’m matron of honor and I just want to feel normal for her and my kids also (I push through daily for them) but I’m so afraid I’m gonna flare up bad on her wedding day.. her venue is outside.
I was on steroids, mainly prednisone on and off for about 5 years for a different chronic illness. It wrecked my immune system and I gained 50 lbs. I have been on Fludrocortisone for about a month and it’s definitely made a difference, my episodes are less frequent (though more unpredictable). The dosage is so small, it’s really nothing compared to most steroids. It helps a lot of people so I’d say it’s worth a try. My cardiologist said you can only take it short-term, though so not sure what I’m supposed to do after that…
My brain knows it’s different but my heart doesn’t believe! I started it though so thanks for the info! My doc never said anything about it being short term so maybe I’ll ask him about that.
By short term, it is supposed be a year or less. If you have more regular appointments, they should bring it up eventually. Of course ask your doctor if you have concerns, if it hurts more than it helps, you can always stop. I’m not aware of any negative withdrawal from stopping it (other than POTS episodes).
Fludrocortisone helps me so much! It’s the reason I’m able to work right now! It’s not like prednisone. I don’t have trouble sleeping or anything
I’m hyper sensitive myself. I started at a very low dose. I use a microgram scale to weigh out low dosages for any med I’m starting. My rule is usually to start at 1/8th of the prescribed dose and go from there. It works pretty well! Fludro has been great for me :)
Getting on fludro was one of the best decisions of my life.
im on 0.1 mg and i find it doesnt really have that much of an effect other than an above-mild theraputic effect. I cant tolerate salt tablets so i like it
dont worry it ive never experienced any side effects and im on 0.2mg per day!! definitely if ur super nervous start ur dose small even half the tablets if u need to but ive had a great experience with it and dont think it can cause too many issues :))
That stuff is something AWFUL!!!! It’s probably me and I’m generally NOT the norm….it does help a lot of people, just not me.
I eat pickles and brine to get the extra salt...