Long Term Florinef Ok?

[ramakentesh]

Im curious about how long some have been on florinef? Had an issues with long term use? Etc.

[CharmedLinz]

I've been on it for a little over 2 years.

Docs say I will be on it for life.

My Cousin who is an RN with POTS has said it can cause kidney damage eventually. She's been on it for 14 years now with no problems. She's tried to wean off of it a few times without success.

[roxie]

I've been on it for about 14 years. I do so bad when I wean off of if.

I think it's on as long as your electrolytes & bp are monitored. People with Addison's disease have to take it their whole life

[Hoosierfan]

Rama, about 16 months and counting, but weaning down. My PCP said she would be ok to put me on it "for life" if she felt I needed it -- she doesn't. Haven't had any issues being on it that long (except for the nasty never ending headache I've had for the last year and half, which is why we are weaning), but when I tried to get off in January after being on it a year my adrenals crashed b/c I did it too fast.

Know you were concerned with some jitteryness, etc. when you started. Hope that calmed down for you.

[RichGotsPots]

I wonder if it can cause Addison, because I know prolonged use of Prednisone can. All the docs tell me they are different still I'd like to know. That's why they put people on prednisone for life too..

[Katybug]

rama,

I went on it in Feb 2011 at .1 mg. (Can't tolerate a higher dose than that.) When I had the bad reaction to prednisone and swelled so badly last month, my immunologist told me to stop both the prednisone and florinef to try to get as much of the edema out of me as possible. I quit both cold turkey and didn't have any ill effects. I have not gone back on the florinef and am no worse for that decision either...my BP and HR have nt changed from where they were on the drug.

[JenLR]

I saw Dr. Grubb today, and he said that he could keep me on up to .2mg of Florinef for the rest of my life, if needed. He commented that he doesn't like to go higher than that for long-term use.

[Hoosierfan]

Rama, I've been able to come down another .025 dose (now at .05), and so far so good. My highest dose last year was .15. I had a couple of adrenaline rushes / bp dips the first few days I was on the lower dose, but it seems my adrenals have stabilized now after about a week. I'm giving it another month before my next step down. My bp has come down a few pts (from 110 to 105 and 100s), but still in ok range and not symptomatic. All that is to say is that if you use this stuff long term (which I read to be more than a month or two), you can taper off of it so long as no underlying adrenal disease and your adrenals will recover.

[martiz]

Hi Rama,

I was on it for a little over 2 years at 0.1 dose once a day. I quit cold turkey and suffered no ill effects. I did feel better on it as long as I kept my salt intake consistent. Increased fluids has never been a problem but my stomach was getting tender from the salt so I decided to give my body a rest.

I don't have a problem getting back on but I have read that it interferes with the thyroid gland. I have also read that that some of the halides are not healthy so I have thought about using licorice root instead. I have used it in the past and did not feel any side effects.

Marti