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POTS and Florinef (Fludrocortisone) Poll

If you take Florinef for POTS what dose are you on?

  • .05mg

    Votes: 4 36.4%
  • .1mg

    Votes: 3 27.3%
  • .15mg

    Votes: 0 0.0%
  • .2mg

    Votes: 2 18.2%
  • .25mg

    Votes: 0 0.0%
  • Have POTS but Florinef didnt help

    Votes: 1 9.1%
  • Have POTS but havent found doctor to give me Florinef

    Votes: 1 9.1%
  • My POTS is being successfully treated with something else

    Votes: 1 9.1%

  • Total voters
    11

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Im trying to find out the most common Florinef dose being used for POTS in us.

edit..whoops..I should of have an amount there which covered a quarter of a pill (that's what my doctor started me first on). Maybe anyone taking lower.. please type a reply.

Comments from those who tried it but couldnt continue taking it due to side affects.. feel welcome to comment here too.
 

Sushi

Moderation Resource Albuquerque
Messages
19,933
Location
Albuquerque
Hi Tania,

I don't fit your poll. I have OI (not POTS) but could not tolerate Florinef. I tried it for about 6 weeks and had awful headaches. I did know about the potassium issue.

As far as saline infusions, my doc at the time was an autonomic specialiat and he left standing orders at a hospital IV clinic for his patients to be given saline infusions as needed. This bypassed the whole emergency room chaos.

Best,
Sushi
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
Hi Tania,

I started on 0.05 and titrated up to 0.2 mg. About two weeks ago I started having severe migraines every day. Because I have bad HAs so often anyway I suffered for a solid week before thinking, could it be the Florinef? So now I'm on 0.1 mg and that seems to help. If I have to, I'll keep cutting back to zero if necessary. I'd much rather have grey-outs than those horrible headaches.

Sometimes the pain is so bad I can barely stand it. I think about going to the emergency room, but the ordeal of travelling and dealing with those buffoons would only make the HA worse, and they'd probably just treat me as a drug addict anyway.

My new neuro is concerned the primary care provider (who prescribed the Florinef) is not closely monitoring me for problems, saying, "Florinef is *not* a trivial drug". I like his attitude. When I take a drug prescribed in microgram doses, I know I'm dealing with something extremely potent, and likely dangerous. Can a person even *see* 50 millionths of a gram of any substance?
 

ahimsa

ahimsa_pdx on twitter
Messages
1,921
I should start by saying that my diagnosis is NMH (Neurally Mediated Hypotension), not POTS. However, at my last cardiologist visit he mentioned POTS when my heart rate went so much between the sitting/standing measurement. And since so much of this OI stuff overlaps, and the terminology is confusing, and I do take Florinef, I thought I'd add to the thread. I hope it is helpful and not confounding data!

I take Florinef as a part of a combination of medications. I take 1/2 tablet (0.05 mg) of Florinef first thing in the morning. I also take a prescription version of potassium, time released, 10 MeQ (Klor-Con). Finally, I take midodrine (ProAmatine), 5 mg, 4 times daily (about 3.5 hours apart, last pill taken 4 hours or more before bedtime). And I should not forget to add the extra salt (I take 5 salt tablets, Bio-Salt brand) and lots of water (about 3 liters daily).

This is the combination that I've been on for a few years now. I used to be on Florinef alone. Over the years I had ramped up to 1 1/2 tablets a day, taking 1/2 tablet (0.05 mg) three times a day. Florinef was helpful in several ways. One unexpected effect was that even though I was drinking more water (won't help much unless you increase salt and water intake) I was NOT waking up in the night to urinate. Previously I was getting up 1-2 times each night. So with the Florinef my body was holding in the fluids for a change.

However, over the years the effect started to wear off. That is why I kept increasing the dose. Then I tried Midodrine, and it works well for me, but the cardiologist suggested that a combination of both drugs might be best in my case. When I added the midodrine I cut down my dosage of Florinef. I also lost 6-7 pounds without trying. Florinef does seem to promote weight gain in some people.

One thing that's important to note is how differently people react to Florinef. For example, I get a lot fewer migraines since I've been on Florinef, not more. But the packet insert does mention headaches so I believe that it's a common side effect. It's wise to monitor any new drug and be wary of side effects, just in case.
 

Sushi

Moderation Resource Albuquerque
Messages
19,933
Location
Albuquerque
Ahimsa,

Have you had no problems with midodrine? (I guess the ants crawling on your scalp, is one most get) o_O

I have a diag of NMH also, but couldn't tolerate either Florinef or Midrodrine. Midodrine seemed fantastic for a couple of weeks, then got awful and sudden side effects. Wish we could figure out why we are all so different!

Best,
Sushi
 

ahimsa

ahimsa_pdx on twitter
Messages
1,921
Ahimsa,

Have you had no problems with midodrine? (I guess the ants crawling on your scalp, is one most get) o_O

Yes, I do get the ants crawling feeling sometimes. For the first few months I kept thinking that a spider had landed on my head. But that feeling has gone way down over the years. It hardly happens any more. I've been on midodrine since 2003.

I don't get any other problems. Yes, sometimes I feel a bit cold when I sit still for a long time. However, compared to feeling out of breath, nausea, heart racing, and all those other pre-syncope symptoms, it's not so bad to feel a bit chilly now and then. I've just learned that having cold hands and feet (and even cold nose) is a good thing. It just means that my blood (I've never been formally tested but I'm sure I'm "a quart low) is going to more important places, like my heart and lungs, instead of my hands/feet. I'm sure it's similar to why I feel so much better in the winter (body naturally retracts blood from extremeties when it's cold).

I'm glad that midodrine worked out for me but I do know that like all drugs it really depends on the person.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Hi Tania,

I don't fit your poll. I have OI (not POTS) but could not tolerate Florinef. I tried it for about 6 weeks and had awful headaches. I did know about the potassium issue.

As far as saline infusions, my doc at the time was an autonomic specialiat and he left standing orders at a hospital IV clinic for his patients to be given saline infusions as needed. This bypassed the whole emergency room chaos.

Best,
Sushi

I specifically wanted to know about this med and POTS hence why Ive focused just on that area. (If i'd included it for treating other things.. it would screw up being able to see what kind of percent are being "successfully" treated for POTS with it).

" I tried it for about 6 weeks and had awful headaches. I did know about the potassium issue. "

Yeah Florinef is meant to be carefully monitored to make sure it isnt messing persons electrolites up. Your doctor probably should of warned you of that.

It's great your doctor has done that to help you. I dont much understand how the saline is used for other OI issues.. with POTS, Ive heard that many who do the saline IVs.. do them daily (as POTS patients dont tend to hold the fluid so hence they need to be done daily if one wants to be treating the POTS all the time in this way, so it would be impractical to be going to the hospital daily for them for most.

Unless someone just wanted one for everytime they were planning to go out of the house so hence not treating the POTS all the time. eg say just having one so they could safely then go out shopping without a possible collapse.

Often with treating a POTS patient in this manner, an indwelling permanent (cant think of what it is called) is, is put in (which is then changed yearly or six monthly..something like that) .. for the infusion.. which then does carry a high risk of infection and hence why I think many doctors against POTS patients using this treatment. Its just not like a weekly treatment as the patients body often within 24 hrs has released all the fluid given (you basically just pee it all back out from what Ive heard).
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I should start by saying that my diagnosis is NMH (Neurally Mediated Hypotension), not POTS. However, at my last cardiologist visit he mentioned POTS when my heart rate went so much between the sitting/standing measurement. And since so much of this OI stuff overlaps, and the terminology is confusing, and I do take Florinef, I thought I'd add to the thread. I hope it is helpful and not confounding data!

Thanks.. sounds like you probably do have POTS anyway seeing the cardiologist saw abnormality there.

One thing that's important to note is how differently people react to Florinef. For example, I get a lot fewer migraines since I've been on Florinef, not more. But the packet insert does mention headaches so I believe that it's a common side effect. It's wise to monitor any new drug and be wary of side effects, just in case.

Nods.. due to POTS often given people headaches.. this med rather may be a relief for some in that way.

jimells said:
My new neuro is concerned the primary care provider (who prescribed the Florinef) is not closely monitoring me for problems, saying, "Florinef is *not* a trivial drug". I like his attitude.

Great to hear that you have found a good doctor :) . Yeah certainly not a trivial drug, not one to be trialing without a good reason to do so.