trying to wean off florinef

[Nathalie]

SoOoOoOo..... my main specialist (the one who diagnosed my POTS) wants to see me wean off the florinef he prescribed me. He wants to see if I could successfully wean off without relapsing.

As one can imagine, the whole idea was less than thrilling. But I've been diligently forging ahead over the past 6 months...or at least, I was, until about 2 weeks ago.

I had to call it quits and go back up a bit about 2 weeks ago. It got to the point where I was so cold (teeth chattering) and so tired (falling asleep right after getting home from work) every day...that I just couldn't take it any more. Not to say the hypoglycemia, brain fog, lightheadedness, palpitations, and daytime fatigue weren't also very difficult on me -- because it was. Very. Difficult. (Oh, and let's not forget about the twice hourly bathroom breaks because everything I drink goes right through me. (Anyone else?).)

So now I'm left with this dilemma. Can it be done? And if so, how long should I expect it will take for my body to adapt between dose changes? I've been giving it one month between dose changes, and with each decrease, it's been minute amounts shaved off. In 6 months, I didn't even manage to wean down from 2 tablets (0.2mg) to 1 1/2 tablets.

Again, this is one of those things people aren't talking much about on the web. It's hard to know if any one is having any success at weaning.

It would be good to hear from others and their experience with weaning off florinef.

Nathalie

 

[Clb75]

I was able to go from 2 pills a a day to one because my BP was getting too high, but once I tried cutting down from one pill to half a pill a day, I started passing out again.    I don't think I could do without it. I forgot how long it takes to build up in your system, I think it's pretty short, like a week or two. I think after a month would be enough time to get an accurate idea of where things are at. If you're that symptomatic once cutting back, hopefully that would be enough for your doctor to recognize you're doing better at a higher dose. 

[DizzyGirls]

My daughter was at 1-1/2 pills once a day and her bp started raising too much.  We spent about a month getting her back down to 1 pill and she is doing well (with that anyway).  Her bp is a lot more stable, but she does definitely need that one pill a day.  When she gets too lightheaded, she has a cup of ramen noodles or some other kind of salty soup.  My thinking is this, if it's too much for your body, then it's a lot easier to back down.  But, when your body needs it, it is very difficult.  I think that kind of holds true for most meds.

[yogini]

Was your blood pressure too high with the florinef or was it normal?  

[Nathalie]

Nope. It was never high.

[yogini]

 I would ask the doctor why he asked you to wean off or make a change.  Most people have to reduce because their BP is too high.  If you are feeling worse off the med, maybe it was working for you.  It is often hard to find a med that works for dysautonomia, so I would be hesitant to change anything

[Nathalie]

I agree...

Unfortunately, the specialist I have is not familiar with the symptoms of POTS aside from the diagnostic criteria.

I think a lot of people are in the same boat, given that it is not a well known or understood condition.

[Guest KiminOrlando]

I think some doctors just want to change the meds as an experiment. It also justifies you coming back every 12 weeks and paying them. One guy would only give me a 30 day supply of meds - no refills, and I had to see him every 30 days for a new script. I dumped him. 

Other doctors have read and believe POTS is a temporary condition and they are testing to see if you still need the meds. They don't listen to the patient to find out if they are still having symptoms. 

I dislike when they try to mess with my meds. It took me a LONG time to find this balance. My life is a house of cards. One little hiccup can bring the whole thing crashing down.

[Nathalie]

I appreciate exactly what you're saying, Kimin. I think that is exactly what this doctor is trying to do. See if the POTS is temporary. The point of contention with my "specialist" is his concern over any long term use of corticosteroids and their possible side effects. I agree with my specialist on the point of trying to avoid any unnecessary side effects if I can come off the florinef in between flare ups. But that has not been my luck.

My body has been reeling for 3 weeks now since quitting the weaning process and going back up to a dose I used to be able to work with to some degree. I haven't gotten my equilibrium back yet. My body is a bit of a mess. I know when I first got diagnosed with POTS, it took 3 months to get back to my life after starting florinef. I slowly got stronger and better able to live my life as the weeks passed. I hope this is the same.

It is amazing the power doctors have to make people feel like failures or silly for not being able to do as they're directed. Even when we know they just don't get it

 

 

[yogini]

I wouldn't assume that the doctor has a bad motive.  Of course you wouldn't want to be on florinef unless you need it.  But it sounds like it was working for you.

You're right that most doctors don't experience treating dysautonomia and they wind up leading us in the wrong direction.    Maybe you can find someone else in your area - there is a DINET list of doctors.

[Always hoping]

You may want to ask your doctor to check your aldosterone levels.  I have read that many POTS people tend to have low amounts.  I know that my gp was concerned about the long term use until they determined that I had extremely low levels of this hormone.  Florticortisone is a replacement for it.  Be well.

[Clb75]

Nathalie,

I’m not sure if your doctor is familiar with this, but florinef is a different type of steroid than conventional ones. They are classed as a mineralcorticoid instead of a glucocorticoid, and don’t cause many of the side effects seen in traditional long term steroid use. Maybe this would change their mind about needing to wean you off.