Elfie Posted March 31, 2010 Report Share Posted March 31, 2010 Hey everyone!I just wanted to ask about everyone's experiences with florinef--Does it work for you?Did you experience weight gain on the med?Was it hard to wean off of?Did you have any problems with infections/colds or immune problems on it?I recently went to a new cardiologist. He was pretty old school and prescribed Florinef to me. He insisted I try it over midodrene because "midodrene is so much newer and isn't natural." I asked him about side effects of Florinef and he said the only one I should worry about was a little swelling in my legs. So , I go fill the prescription (I had another one I needed to fill) and then I am reading the literature and it says not to take it if you currently have an infection and warns about potential immune suppression and weight gain. I don't think I realized it was a steroid (I knew it was a hormone) and got no warning from the doc. I currently have an infection, so I can't start taking it right now. However, I am not sure that I want to try it now-- and I have a whole d*mn bottle. Since getting POTs I have been sick more often than in my entire life and every bug I pick up turns into a sinus or ear infection. So, just how seriously should I be worried about this? Quote Link to comment Share on other sites More sharing options...
Ravenau1 Posted March 31, 2010 Report Share Posted March 31, 2010 I've been on Florinef since the beginning of the year and it has made a huge difference. It's cut the fainting down by about 90%. I'm on a fairly high dose now and I have noticed that it's made me a bit 'puffier' but with how much better it's made me feel I'm not really that worried about it. I've put on a heap of weight since the whole pots thing started so at this point a little more hardly seems noticeable lol. I haven't noticed that I pick up more infections/illnesses on it, but I have to say that since I had chemo and radio years ago I pick up pretty much everything that I come in contact with anyway. I started midordrine yesterday also. And came off my beta blockers when I started the florinef. Quote Link to comment Share on other sites More sharing options...
Brye Posted March 31, 2010 Report Share Posted March 31, 2010 Works for me! Tried a stretch without it recently because I HATE all the fluid retention. I had horrible memory/concentration problems without it. I couldn't remember the month, took the wrong meds, forgot things numerous times when I left the house. Guess I need it!! Not worse with the colds or infections with me!!Brye Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted March 31, 2010 Report Share Posted March 31, 2010 I hated it, gained a lot of weight, had one infection after another and I swear it's not out of my system totally yet. I did like that I wasn't passing out at night, but now my blood pressure ranges from low to dangerously high and it gets higher as I stand. Quote Link to comment Share on other sites More sharing options...
peppermint patty Posted March 31, 2010 Report Share Posted March 31, 2010 When I started taking Florinef, I felt wonderful---full of energy; but after being on it a month, I took my regular pill in the morning and had a severe allergic reaction. I had to go to the hospital. To my dismay, I can no longer take it. Quote Link to comment Share on other sites More sharing options...
mountain girl Posted April 7, 2010 Report Share Posted April 7, 2010 Florinef has helped me. I had no real side effects and I have been sensitive to meds. Quote Link to comment Share on other sites More sharing options...
Aquadiva Posted April 7, 2010 Report Share Posted April 7, 2010 Florinef is a corticosteroid, so it doesn't suprise me that it may cause weight gain. Does anyone know if it is as bad as prednisone and if it can cause the cushing syndrome, body hair, acne or stretch marks? I have thought of this medication for my daughter, but she has been on prednisone and suffered all the side effects and SWEARS she will NEVER take it again. I also see that it mentions that some medical conditions will interact with florinef such as UC, so it may be out for her anyway. It may be worth talking to her dr. about it, though. Quote Link to comment Share on other sites More sharing options...
mkoven Posted April 7, 2010 Report Share Posted April 7, 2010 I hate prednisone and its side effects. Florinef feels like a very different beast. I tolerate it quite well. Quote Link to comment Share on other sites More sharing options...
potsgirl Posted April 7, 2010 Report Share Posted April 7, 2010 What is "UC"? Quote Link to comment Share on other sites More sharing options...
Aquadiva Posted April 7, 2010 Report Share Posted April 7, 2010 What is "UC"?Sorry, UC is ulcerative colitis. Quote Link to comment Share on other sites More sharing options...
runningshoe Posted April 7, 2010 Report Share Posted April 7, 2010 Only gained about 5 pounds on it - all water I assume. Too much makes my bp high. No colds etc. at all on it and its been 3 years. Quote Link to comment Share on other sites More sharing options...
potsgirl Posted April 8, 2010 Report Share Posted April 8, 2010 Thanks! Quote Link to comment Share on other sites More sharing options...
dsdmom Posted April 16, 2010 Report Share Posted April 16, 2010 Florinef is a mineralocorticoid, not a glucocorticoid. Prednisone is a glucocorticoid although it also has some mineralocorticoid characteristics as well. I tried florinef a few years ago and did not do well with it (felt like I was having an out of body experience) but then was put on prednisone for something else and didn't have those problems at all. I am being put back on florinef this weekend because I am trying to come off the prednisone and having a very difficlut time - one of my doctors thinks that the fluid shift is causing problems and adding in a little more mineralocorticoid may help. I'll let you know how it goes.Did anybody else have a hard time building up to their current dose and what is your current dose? Quote Link to comment Share on other sites More sharing options...
erik Posted May 7, 2010 Report Share Posted May 7, 2010 Fludro is technically said to be "high potency" glucocorticoid and "ultra high potency" minercorticoid. So while it is technically both, one is taking a very small dose and the glucocorticoid factor is pretty low, especially compared to something like predisone and the others in that class. Note that doses are in micrograms, which keeps the gluco aspect at bay for most folks so for practical porpoises like us, it isn't a gluco.Some might be sensitive enough that they get some of those things though... for example, I get mood effects for a while when taking it, which is not typically thought to relate to kidney regulation (mineralcorticoid) but is very typical of glucocorticoid hormone impact.I have not personally heard it to be considered "immunosuppressive" at the low 50-200 microgram doses we tend to use... but the standard drug information printouts still have that standard "steroid" information on them. Quote Link to comment Share on other sites More sharing options...
heathmcev Posted May 7, 2010 Report Share Posted May 7, 2010 I had absolutely horrible prednisone reactions in the past and refuse to ever take it again - but have had none of those side effects on fludrocortisone. I did ask about that when I was rx'd it and the Drs told me it was a different type of steroid. I'm also on hydrocortisone which also has not produced any of the prednisone side effects. I have experienced weight gain and "puffiness" - neither of which I'm pleased about (esp as summer's arriving)... but as others have said, the positives outweigh the negatives (lol - no pun intended!). I have had almost NO orthostatic hypotension since starting it - which is huge!!good luck if you decide to go for it dizzyde Quote Link to comment Share on other sites More sharing options...
mkoven Posted May 7, 2010 Report Share Posted May 7, 2010 I also have had awful reactions to prednisone, but tolerate florinef (3/4 of a pill) quite well. I actually haven't gained much weight after almost two years on it. I feel like I can actually benefit from salt and fluids on it, whereas before I would pee it all out. It has really helped and pulled me out of a really bad place. Quote Link to comment Share on other sites More sharing options...
Nikki Posted May 8, 2010 Report Share Posted May 8, 2010 For me Florinf didn't work so well. I didn't have any infections or weight gain..but my blood pressure isn't just low - it also spikes too..and when I was on it, it made the spikes even worse for me. It would go as high as 160/120 and so I had to stop taking it completely. I can see where it would help someone with JUST low blood pressure..but if it fluctuates at all, just be careful with it. Quote Link to comment Share on other sites More sharing options...
mkoven Posted May 8, 2010 Report Share Posted May 8, 2010 to my surprise, it evened out my bp spikes. for me, i was swinging high to compensate for swinging low. once i no longer had the dips, the spikes stopped. My bp has been pretty consistent on it--between 105/70 to 125/75. Before i was all over-- from 70/30- to 170/100. Quote Link to comment Share on other sites More sharing options...
Jan Posted May 8, 2010 Report Share Posted May 8, 2010 I have asked numerous doctors and pharmacists if Florinef has the same side effects as prednisone and all reassure me that it doesn't. They all told me it shouldn't make me more prone to infections or bone loss etc.I have taken Florinef for over 10 years now, .2 mg a day and it has worked well. It did take a month or so before I noticed my BP stabilizing. It did not have instant effects.I started at .2 tried .3 for awhile and felt GREAT for a few days and then felt loopy and out of it so dropped back down to .2I did not work my way up to the dose, which I should have, but I think at the time both my doctor and I were desperate to find ANYTHING that helped.Good luck, I hope it helps. Quote Link to comment Share on other sites More sharing options...
brethor9 Posted January 9, 2013 Report Share Posted January 9, 2013 so I am bumping this post as I just found out recently that I am showing the early signs of Cushings and liver enlargement thanks to being on Florinef. I was completely shocked! I had gone to my specialist because I have had some swelled areas around my neck lately and thought perhaps it was edema or infection. To my surprise he stated you are getting a bit of a "moon face" time to slow down on the florinef.......I only take 1/4 tablet a day. When I said to him that it is supposed to be a mild glucocorticosteroid he replied it doesnt matter it is still a steroid and over time even a small dose can build up in the tissues and start causing side effects. WOW who knew!!? So now I have been bumped down to every other day to see if the effects lessen. Just thought I would share this in case anyone else is experiencing funny side effects.Bren Quote Link to comment Share on other sites More sharing options...
LMG Posted January 9, 2013 Report Share Posted January 9, 2013 Bren,So sorry about the difficulties from Florinef. I too am on .o25 (1/4 pill) and was told there couldn't be any long term side effects. Have you been on the florinef a long time? Quote Link to comment Share on other sites More sharing options...
brethor9 Posted January 9, 2013 Report Share Posted January 9, 2013 I have been on it for almost 2 years at a small dose. My specialist said in some people they metabolize it differently and with it building up over time it can start causing side effects. None of this was ever mentioned to me; interesting enough after searching around I found a medical article about Florinef that clearly states it can cause Cushing like symptoms...oh boy lol.....I am hoping maybe this is a sign that my body just doesn't need it but I dont think I will be that lucky I am not trying to scare anyone just wanted people to be aware of the possibility Bren Quote Link to comment Share on other sites More sharing options...
arizona girl Posted January 9, 2013 Report Share Posted January 9, 2013 Yes, I was told the same thing about steriod pain injection shots. I have hyperinsulinemia/metabolic syndrome/pcos. I also have hashimoto which in and of itself causes a rise in cholesterol. That was how we finally figured out I had hashi. Everytime I'd get a shot it would cause weight gain and my metabolic labs would soar. The same thing happened when I first got sick and they put me in dexamethsone and years later when an integrated doc put me on dhea. They are all steriods and steriods do have these side effects.It is why they are going towards more steriod sparing medications when treating autoimmune diseases now. Quote Link to comment Share on other sites More sharing options...
AllAboutPeace Posted January 9, 2013 Report Share Posted January 9, 2013 so I am bumping this post as I just found out recently that I am showing the early signs of Cushings and liver enlargement thanks to being on Florinef. I was completely shocked! I had gone to my specialist because I have had some swelled areas around my neck lately and thought perhaps it was edema or infection. To my surprise he stated you are getting a bit of a "moon face" time to slow down on the florinef.......I only take 1/4 tablet a day. When I said to him that it is supposed to be a mild glucocorticosteroid he replied it doesnt matter it is still a steroid and over time even a small dose can build up in the tissues and start causing side effects. WOW who knew!!? So now I have been bumped down to every other day to see if the effects lessen. Just thought I would share this in case anyone else is experiencing funny side effects.BrenBren, Oh no, sorry to hear that you have gotten this news I always hope to see that you are posting about improvements - not another thing to be concerned about! Are they planning to taper you off the Florinef completely or are they hoping every-other-day will be enough. Thanks for sharing this with the rest of us.((hugs)) Quote Link to comment Share on other sites More sharing options...
brethor9 Posted January 9, 2013 Report Share Posted January 9, 2013 Thanks guys!Peace I am always hoping for improvement......it seems I get better in one area and then something else pops up.......my body just likes being screwed up it seems ......doc has changed my dose to every other day for now to see if it changes anything. Funny enough my cortisol serum levels really were not high still waiting on the urine results though. I have an ultrasound tomorrow of my neck to rule some other things out too.....I knew something was wonky because just in the last month I had started to put on a lot of weight and went up 3 bra sizes!! ha, ha.....hubby loves that...me not so much ;(...... the weight gain has been ridiculous and I hardly eat....but it's the liver damage that is making me think twice about taking it at all...... hope you are hanging in there Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.