Florinef

[friday7]

I have never tried Florinef. I got my BP up by just using the salt so I never bothered. But now I"m wondering I should try Florinef and other drugs like it.

I tried Midodrine, and Mestinon, but neither had any effect.

I tried a beta blocker but that didn't help either. Then I started taking salt tablets and my BP went up. That helped a lot. So I never thought of using Florinef. I guess I thought the salt did what the Florinef would have. But now I'm thinking , I don't really know a lot about the drug and what it does. Perhaps it could have some other benefits for me.

So, I just want to know people's experiences with Florinef. If it helped you, and if it did, how has it helped you?

P.S. I have a real problem with dryness. My hair, my skin, my sinuses, everything. and now my eyes are so dry they burn. I was wondering if Florinef helped with dryness at all..since I heard it was to help retain water.

[britishangel6]

Multiple doctors told me to add salt for years and it didn't help, but this was prior to diagnosis. When I finally got someone to listen I began florinef. The florinef helps me. When I wasn't on it my heart rate was much higher and symptoms much worse! To tell the truth, when I first started it I noticed a difference. After a while I assumed it was helping but was still so miserable that I wasn't sure. THEN, I had to stop it for a while and let me tell you: it made me appreciate it all over again!

Florinef enables your body to retain more sodium (salt) than it can on its own. With the retained sodium is retained water (in the body, where salt goes, water goes). This means that on florinef your body's total fluid volume increases, which should decrease symptoms and help your body maintain blood pressure with less of a heart rate increase. Being a POTS patient, that's where my knowledge lies and to that, about 50% of POTS patients are hypovolemic (low blood volume) so an increase in volume (even if not blood itself) can help. Myself, I am not considered hypovolemic POTS but as I said before, still appreciate an improvement.

Realize though, that all the fluid retained won't be in the vascular system but outside as well. Usually, this just means some puffiness and swelling, mainly in the legs, feet, and ankles. The swelling can be minimized by compression stockings and the amount of fluid retention monitored by keeping an eye on your weight. Now florinef is a steroid (glucocorticosteroid)so if you're diabetic or border-line, you need to keep an eye on blood sugar. There are other side effects, of course, more so if you have other health problems, but these are the emain ones that the doctors and my own research uncovered. I hope I didn't confuse you with too much medical jargon and if so just msg me with any questions.

As to the dryness I don't have much to say. My skin and lips are really dry too and cottonmouth isn't rare either.

[TXPOTS]

To preface, everyone responds differently to medications. So, the following is just my personal experience.

Florinef has been a wonder drug for me. I was bedridden before I started Florinef in January. I believe it worked well for me because my aldosterone levels were undetectable during several blood draws. I had a sunken in appearance to my face, salt cravings, and extremely dry mouth and eyes. I looked like a prune. The Florinef helped expand my blood volume. I was not able to this with salt alone. It did improve my mouth and eye dryness. With that being said, I only take 0.1mg/ day. My blood pressure gets too high on higher doses, and I get the classic Florinef headaches.

It's important to "start low and go slow". Florinef does not work right aways but builds in your system over a period of 2-3 weeks until steady state is reached. I get my potassium levels checked periodically because Florinef can lower potassium levels. It causes your body to retain sodium at the expense of potassium. Personally, my potassium levels have always been well within normal range. Florinef is also a weak vasoconstrictor. It can help blood vessels constrict, but is not as powerful as Midodrine in this regard.

The point of Florinef is really to help your body retain salt. The question is whether you are able to do this adequately without Florinef. You may ask your physician. Have you had aldosterone and renin levels checked?

Hope this helps a little.

[Tuesday]

It's my understanding that it's not just your BP that's important, it's your blood volume, too.

I'm on salt tablets, midodrine, and florinef. Before I added the florinef the salt and midodrine were helping, but they wore off very quickly and I crashed at night when I wasn't taking them. The florinef helps your body retain the salt, and seems to help extend the benefit of the midodrine and salt for a longer period of time. I have found that taking all three gives me a much greater outcome than any one of them by themselves.

[Heiferly]

friday7,

Considering the dryness, have you been thoroughly evaluated for both thyroid disorders and Sjogren's?

Re: fludrocortisone, I'd say it boils down to how well you're already doing without it. You said you already have your BP under control with salt-loading, but didn't mention the extent to which your other symptoms are or aren't resolved. If you're already under good symptom control, I don't see the point in rocking the boat. If you only have mild residual symptoms, you might have luck adding further non-pharmaceutical interventions to your treatment regimen, such as Rx graduated compression hose and/or abdominal compression (if you're not already doing that), or by trying something like physical therapy or cardiac rehab or some other physician recommended exercise program to gradually work up your muscle tone (and skeletal muscle return of blood to the heart).

If you're still having moderate to severe symptoms, then fludrocortisone would certainly seem like a natural choice for medication as you've had improvement with salt-loading and fludro. would maximize your salt/fluid retention. I'm surprised to hear you say that you've tried Mestinon but never fludrocortisone. Is there a reason that your docs tried that first? Do you have a contraindication for fludro? Or was there a specific indication that made Mestinon a particularly appropriate choice in your case?

[friday7]

Multiple doctors told me to add salt for years and it didn't help, but this was prior to diagnosis. When I finally got someone to listen I began florinef. The florinef helps me. When I wasn't on it my heart rate was much higher and symptoms much worse! To tell the truth, when I first started it I noticed a difference. After a while I assumed it was helping but was still so miserable that I wasn't sure. THEN, I had to stop it for a while and let me tell you: it made me appreciate it all over again!

Florinef enables your body to retain more sodium (salt) than it can on its own. With the retained sodium is retained water (in the body, where salt goes, water goes). This means that on florinef your body's total fluid volume increases, which should decrease symptoms and help your body maintain blood pressure with less of a heart rate increase. Being a POTS patient, that's where my knowledge lies and to that, about 50% of POTS patients are hypovolemic (low blood volume) so an increase in volume (even if not blood itself) can help. Myself, I am not considered hypovolemic POTS but as I said before, still appreciate an improvement.

Realize though, that all the fluid retained won't be in the vascular system but outside as well. Usually, this just means some puffiness and swelling, mainly in the legs, feet, and ankles. The swelling can be minimized by compression stockings and the amount of fluid retention monitored by keeping an eye on your weight. Now florinef is a steroid (glucocorticosteroid)so if you're diabetic or border-line, you need to keep an eye on blood sugar. There are other side effects, of course, more so if you have other health problems, but these are the emain ones that the doctors and my own research uncovered. I hope I didn't confuse you with too much medical jargon and if so just msg me with any questions.

As to the dryness I don't have much to say. My skin and lips are really dry too and cottonmouth isn't rare either.

Thanks for the reply. I have a little bit better idea of what Florinef can do for you.

I'm not Diabetic but I have Hypoglycemia, so I already keep an eye on my Blood sugar levels.

You mentioned puffiness. Have you gained weight at all due to Florinef? just curious. I guess a little added wight wouldn't be bad if you feel enough improvement in your health. I'm just scared because I already have such a hard time fighting to keep weight off.

How long were you taking it before you noticed an improvement in symptoms?

[friday7]

To preface, everyone responds differently to medications. So, the following is just my personal experience.

Florinef has been a wonder drug for me. I was bedridden before I started Florinef in January. I believe it worked well for me because my aldosterone levels were undetectable during several blood draws. I had a sunken in appearance to my face, salt cravings, and extremely dry mouth and eyes. I looked like a prune. The Florinef helped expand my blood volume. I was not able to this with salt alone. It did improve my mouth and eye dryness. With that being said, I only take 0.1mg/ day. My blood pressure gets too high on higher doses, and I get the classic Florinef headaches.

It's important to "start low and go slow". Florinef does not work right aways but builds in your system over a period of 2-3 weeks until steady state is reached. I get my potassium levels checked periodically because Florinef can lower potassium levels. It causes your body to retain sodium at the expense of potassium. Personally, my potassium levels have always been well within normal range. Florinef is also a weak vasoconstrictor. It can help blood vessels constrict, but is not as powerful as Midodrine in this regard.

The point of Florinef is really to help your body retain salt. The question is whether you are able to do this adequately without Florinef. You may ask your physician. Have you had aldosterone and renin levels checked?

Hope this helps a little.

That's what I feel like right now, a Prune.LOL I'm glad to hear it helped you with that.

No I never had my aldosterone and renin levels checked. What is the significance of those tests? The thing is I'm being treated by a GP right now and so I've really got to bring the information to her. So in order to get any tests or try new meds I've got to get some information I can bring to her showing why this is needed for patients with POTS.

To tell you the truth I haven't been paying attention to the POTS since I haven't had a "POTS" doctor so I've been concentrating on treating the symptoms mostly, like GI issues, and sinus . plus hormonal stuff. But now I feel I want to go back to looking at the POTS itself and making sure I'm doing all I can to treat that. So I kind of have to re educate myself.

I didn't know it can lower potassium.

I've also seen that people take Florinef and salt and say the two together are more helpful than just the salt. I think that Florinef is a weak vasoconstrictor is important since I'm only taking salt. Maybe adding the Florinef can help the blood volume better.

[friday7]

It's my understanding that it's not just your BP that's important, it's your blood volume, too.

I'm on salt tablets, midodrine, and florinef. Before I added the florinef the salt and midodrine were helping, but they wore off very quickly and I crashed at night when I wasn't taking them. The florinef helps your body retain the salt, and seems to help extend the benefit of the midodrine and salt for a longer period of time. I have found that taking all three gives me a much greater outcome than any one of them by themselves.

So the Florinef helps with the blood volume..and you found the Midodrine helps also? See when i was on Midodrine, that was it. I wasn't even taking salt tablets back tehn. So who knows, maybe it might have been more beneficial had I been taking it with the Florinef and the salt.

[friday7]

friday7,

Considering the dryness, have you been thoroughly evaluated for both thyroid disorders and Sjogren's?

Re: fludrocortisone, I'd say it boils down to how well you're already doing without it. You said you already have your BP under control with salt-loading, but didn't mention the extent to which your other symptoms are or aren't resolved. If you're already under good symptom control, I don't see the point in rocking the boat. If you only have mild residual symptoms, you might have luck adding further non-pharmaceutical interventions to your treatment regimen, such as Rx graduated compression hose and/or abdominal compression (if you're not already doing that), or by trying something like physical therapy or cardiac rehab or some other physician recommended exercise program to gradually work up your muscle tone (and skeletal muscle return of blood to the heart).

If you're still having moderate to severe symptoms, then fludrocortisone would certainly seem like a natural choice for medication as you've had improvement with salt-loading and fludro. would maximize your salt/fluid retention. I'm surprised to hear you say that you've tried Mestinon but never fludrocortisone. Is there a reason that your docs tried that first? Do you have a contraindication for fludro? Or was there a specific indication that made Mestinon a particularly appropriate choice in your case?

Well I tried Mestinon quite a few years ago when I was first diagnosed and I didn't really know about other meds. I guess it was just something that that doc found helpful in some of his patients.

In me , I wound up having gastric problems and the food I ate wound up in the toilet a few hours later, so that was not good for me.

I am dong better than when first diagnosed. At that time my Mom had to push me around in a wheelchair in order to get out. Now I can walk and use a walker with a seat so if i feel faint I just sit down. But I still can't get out much. I still can't work. I still can't even get a volunteer job. Sometimes I can't even do much around the house. I need improvement.

I did have a test for Sjogren's done a while ago. It was a blood test. That came out normal.

And I was found to have hypothyroidism last year. I've been taking meds for that and my TSH is in normal range now.

The thing is it's hard to know what its causing what problems sometimes.

Like when you have POTS , a lot of people have low Vit D, low B, CFs, Fibromyalgia, GI problems, Hypothyroidism, etc etc,

So It's like, is the POTS causing me to feel weak or is it the Hypothyroid. or is it, the Anemia, etc. etc.

But I know since I haven't had a doctor that was informed in POTS I kind of let that part of it go.

I"ve had no doctor that treats me as a POTS patient because of my insurance (Medicaid) I only get so much help. No one I see knows anything about POTS. I've been from doc to doc to doc..and the only one that knew anything about it enough to treat me was the first doc that diagnosed me, and I can't afford to see him.

Well I've been treating all of the things that are wrong with me but not the POTS because of this. I feel like it's time to look a the POTS again and make sure I'm doing what I can to treat it right. It's gonna be hard of course because I'm dealing with a GP that never heard of it before me, but she seems nice and I feel if i bring in the right information , she might be willing to try florinef and things like that.

But I'm wondering if you or anyone knows of any good clear info on how and why it is used for POTS?

Wiki has some good info but I'm not going not bring in anything to my doctor from Wiki. Other sites I have found are way too technical for me to read without using a medical dictionary.

So if anyone could point me to a good site that explains Florinef well and why it is used for POTS I'd appreciated it.

[KLK1305]

I think that I am experiencing some nasty side effects from Florinef. I have only been taking it for 3 weeks now, .1mg, 3x a week and I know that isn't alot. But within a few hours of taking it I am having bp spikes up around 130/79 (normal for me is 90/60ish) and my heart rate is going crazy. Then my tremors are being FAR worse than normal. When it starts doing this I have a headache around 10 on a scale of 1 to 10 and sweat profusely. I am going to the doctor tomorrow and hopefully we can figure something out.

Also Friday7 if you go to NDRF.org there is a handbook for people like us. If you go to the treatment section it has a pretty good description of all the different meds that are used for treatments. Hope that helps some for you!

[TXPOTS]

I saw an endocrinologist who ordered the renin and aldosterone. It is important not to consume a lot of salt before the tests as sodium can suppress renin. Beta blockers and clonidine can also reduce renin levels, but you did not mention being on those. Luckily, I have not noticed any puffiness or swelling, so that varies from patient to patient. I did gain weight, but I needed the extra fluid volume. Too much swelling should be evaluated by a physician.

Krissy,

Glad you are seeing your doctor to re-evaluate the Florinef. Sounds like you are not tolerating it well. The sweating and headaches can definitely be from the Florinef.

[friday7]

I think that I am experiencing some nasty side effects from Florinef. I have only been taking it for 3 weeks now, .1mg, 3x a week and I know that isn't alot. But within a few hours of taking it I am having bp spikes up around 130/79 (normal for me is 90/60ish) and my heart rate is going crazy. Then my tremors are being FAR worse than normal. When it starts doing this I have a headache around 10 on a scale of 1 to 10 and sweat profusely. I am going to the doctor tomorrow and hopefully we can figure something out.

Also Friday7 if you go to NDRF.org there is a handbook for people like us. If you go to the treatment section it has a pretty good description of all the different meds that are used for treatments. Hope that helps some for you!

Sorry it doesn't seem to be going well for you. Maybe you need to start on a lower dose? I know you're not taking much but I know sometimes some people are more sensitive to medication than others. I always start out with the lowest dose I can on Meds cause I've had problems with meds in the past.

Thank you I'll try that site.

[friday7]

I saw an endocrinologist who ordered the renin and aldosterone. It is important not to consume a lot of salt before the tests as sodium can suppress renin. Beta blockers and clonidine can also reduce renin levels, but you did not mention being on those. Luckily, I have not noticed any puffiness or swelling, so that varies from patient to patient. I did gain weight, but I needed the extra fluid volume. Too much swelling should be evaluated by a physician.

Thanks for the info about the renin and aldosterone. I will have to watch the salt then if I take the tests. I take a ton of salt each day in my food and then six salt tablets. Yeah I haven't been on Beta Blockers for a few years so that's not problem. Only problem is who will give me the tests and will my insurance pay for it. I hate the idea of gaining weight. I've already got so many things that make me gain weight. I have such trouble just keeping from gaining. Although if it helped me enough I guess I wouldn't mind. If I felt better I might be able to exercise more and that could help the weight.

thanks again.

Susan

[Heiferly]

All of the info I get on dysautonomia and meds I get from medical journals and from medical textbooks. Sorry I don't know of sources that are accessible for laypeople that provide a more detailed explanation than what has already been given here. However, if your doctor wants to know why fludrocortisone is used in POTS/dysautonomia, it would be extremely easy for a physician to look this up in peer-reviewed journal articles via Google Scholar and/or PubMed or to access autonomic textbooks via a hospital or university medical library (ones that aren't in holdings can be accessed via interlibrary loan). There's really no reason your doctor shouldn't be able to find this information, so if you bring up the name of the drug, your doc should be able to research it quite easily. I'm not a doctor (not in the least!) and I find and read all of this stuff; if your doctor can't, you're in more trouble than you think.

[issie]

Florinef is a synthetic version of aldesterone. It will help your body retain salt and therefore fluid. But, it will lower the bodies natural production of renin and aldesterone. There have been allot of conversations on renin and aldesterone. Type in a search and read those before you decide if you really want to consider trying this or not. (I personally, didn't tolerate it. It gave me horrible headaches.)

[britishangel6]

I only gained 2-3 pounds water weight (on 0.1mg twice a day) and no increase in appetite. I noticed improvement about a week and half in.

[Chaos]

I have been on Florinef for 3+ months. I had a terrible time getting started on it (not unlike what KrissyK described) and really wanted to stop it. However, once past the initial month and getting on a stable dose, I have to say I think it has helped me. I did gain 8 pounds which I can't lose but my energy level is much better and my exercise intolerance has improved.

When I asked the endo for the aldosterone/renin tests he said you had to stop the florinef to do them, so if you want to do them, sounds like you should do them BEFORE you start the florinef. I sure don't want to stop it and then have to load onto it again.

The Neuro I saw for the dysauto said that dry eyes and mouth etc can be a symptom of the dysauto, but you should probably check out the other syndromes mentioned as well.

Good luck!

[friday7]

I only gained 2-3 pounds water weight (on 0.1mg twice a day) and no increase in appetite. I noticed improvement about a week and half in.

Well that's good to know.

I guess it works differently on each person but still it's good to hear that it helped you and you didn't gain much,thanks.

[friday7]

All of the info I get on dysautonomia and meds I get from medical journals and from medical textbooks. Sorry I don't know of sources that are accessible for laypeople that provide a more detailed explanation than what has already been given here. However, if your doctor wants to know why fludrocortisone is used in POTS/dysautonomia, it would be extremely easy for a physician to look this up in peer-reviewed journal articles via Google Scholar and/or PubMed or to access autonomic textbooks via a hospital or university medical library (ones that aren't in holdings can be accessed via interlibrary loan). There's really no reason your doctor shouldn't be able to find this information, so if you bring up the name of the drug, your doc should be able to research it quite easily. I'm not a doctor (not in the least!) and I find and read all of this stuff; if your doctor can't, you're in more trouble than you think.

Thanks for the info. I guess I was concerned that fludrocortisone might not be that well known for treating POTS. I used to be on a drug that was used for another disease and doctors that didn't understand would always question why I was on it. But I guess the thing was they weren't really doing any research on it.

I suppose even if I point my doctor to potsplace she should find enough info to support me using it..But if not I could always point out the resources you mentioned.

thanks.

[POTSdad]

My 18 year old daughter has now used Florinef along with a high sodium diet for 2 months. The results have been amazing!! No more syncope even without stockings. All the other POTS symptoms have also decreased significantly. Now instead of having 15-20 bad days a months, she has 2-3 bad days a month. What a difference!

My daughter started the Florinef at 0.025 mg once a day and over 3 weeks she gradually worked up to 0.05 mg twice a day. This level seems to be working well, so we decided to leave it at this level. Her blood pressure is within normal limits.