john redman Posted October 28, 2006 Report Share Posted October 28, 2006 Florinef is a steroid, fludrocortisone Acetate. I was just prescribed to start it, and I have searched and read a bunch of back posts on it.I'd like to hear from those who had GOOD experiences, as well as from those who had BAD experiences with it. From all the old posts, it's hard to tell whether this is a good medicine that is generally well-tolerated and helpful, or if it's a bad medicine that has many side effects. What do people really think about Florinef?Thanks, John Quote Link to comment Share on other sites More sharing options...
desiree942 Posted October 28, 2006 Report Share Posted October 28, 2006 Florinef is a steroid, fludrocortisone Acetate. I was just prescribed to start it, and I have searched and read a bunch of back posts on it.I'd like to hear from those who had GOOD experiences, as well as from those who had BAD experiences with it. From all the old posts, it's hard to tell whether this is a good medicine that is generally well-tolerated and helpful, or if it's a bad medicine that has many side effects. What do people really think about Florinef?Thanks, JohnHi John, I take florinef with an SSNRI and it has really helped me to get stable and minimized my acute episodes of pre-sync. I've had few side effects other than weight gain. From what I have raed you need to take in enough sodium to see the weight gain or it's not being effective.Though it's worked I am trying to get my dose down b/c it is not reccomended at a dose of more then .2mg and I have been on .3mg. It is also NOT a lifelong drug ((sccording to dr. grubb) so I'd like to get stable on something that I can take long term since I don't know how long I'll need meds. When I drop the dose down I get very symptomatic. It is REALLY REALLY IMPORTANT that you have your postassium monitored. Mine has dropped and I am taking a supplement which is harsh on my stomach. Dr. Grubb said even low normal potassium levels are bad with POTS and the new dr. I saw yesterday who knew about POTS said I need my potassium to in the range 4 (3.4-5 is th range). I have talked to someone who landed in the hospital b/c her potassium was near death low on the florinef. Quote Link to comment Share on other sites More sharing options...
marnian Posted October 28, 2006 Report Share Posted October 28, 2006 Obviously, everyone has different experiences, but you said you wanted GOOD ones... I've been on florinef for 4 months. It's definitely helped me and hasn't had any noticeable side effects. I've been lucky with most medicines, but florinef has been particularly easy for me. Quote Link to comment Share on other sites More sharing options...
Tanzanite Posted October 28, 2006 Report Share Posted October 28, 2006 Been on florinef just over a year, brilliant for me, no side effects. Quote Link to comment Share on other sites More sharing options...
JaneEyre9 Posted October 28, 2006 Report Share Posted October 28, 2006 A normal dose didn't do me many favors, but I'm sensitive to meds, so a lower dose seems to be doing the trick. I particularly appreciate that i don't have gastrointestinal trouble from it, as many meds do that to me. Good luck! Quote Link to comment Share on other sites More sharing options...
becky Posted October 28, 2006 Report Share Posted October 28, 2006 HI, I've been on florinef for 2 years now 0.3mg daily, can't say i noticed much difference in my pots unti i started an ssri aswel and salt tablets. Not many doc know about pots over here so getting my pottasium tested is a nightmare, but i have had terrible side effects - really bad stomach pain and problems with digestion, lactation (which can also happen in men), and excess body hair. i'm feeling musch better now thouh and i'm seeing my doctor next week to try to come off these tablets because i a also wrried that they aren't meant to be taken long term and if i do need medication would like to find som alternatives bebs x x x Quote Link to comment Share on other sites More sharing options...
DSM3KIDZ Posted October 28, 2006 Report Share Posted October 28, 2006 I've been on .1 mg for a few months and I find it beneficial. I want to get to .2 but than the headaches become more severe.I also take a potassium supplement with it. I think it's definitely worth a try.Good luck with itDayna Quote Link to comment Share on other sites More sharing options...
desiree942 Posted October 28, 2006 Report Share Posted October 28, 2006 John -- I just remember something new I learned about florinef -- monitor MAGNESIUM as well as potassium. My magnesium was Ok but florinef depletes both Potassium & mag.. Quote Link to comment Share on other sites More sharing options...
futurehope Posted October 28, 2006 Report Share Posted October 28, 2006 I took the generic fludrocort for 2 weeks. I took .05 mg/daily, half a .1 mg pill. At the same time, I began to take 1/4 tsp sodium bicarbonate in the AM and the PM. This was to increase salt.The fludrocort/salt combo got my pulse pressure where I wanted it.Unfortunately, my bladder reacted poorly. My interstitial cystitis flared up, meaning, my back hurt, my pelvic area hurt, urinating burned and I had to stop taking it.The good news is, it appears that though I am no longer on the fludrocort, the drinking of the salt solution in the AM and AM is still giving me the same results. Quote Link to comment Share on other sites More sharing options...
scarfgirl Posted October 28, 2006 Report Share Posted October 28, 2006 Florinef works great for me. No side effects at all, but I am concerned about long term effects of using it so I stay on as low a dose as possible. I know some people use licorice instead of florinef so that's always something to look into if Florinef won't be your friend. Quote Link to comment Share on other sites More sharing options...
john redman Posted October 28, 2006 Author Report Share Posted October 28, 2006 Thanks for all the Florinef, good, bad, and ugly posts.Do people tend to take it in the morning or at night? Which is better for side effects?Why does Dr. G and others say it is not a long-term medication?Thanks,John Quote Link to comment Share on other sites More sharing options...
juliegee Posted October 28, 2006 Report Share Posted October 28, 2006 Hi John,Florinef has been a wonder drug for my son. Do some more research. It has steroid properties, but none of the negative side effects of a true steroid. My son's doc, the incomparable (we think!!!) Peter Rowe of Johns Hopkins had Mack start slowly with florinef. He first began by taking 6 Thermotabs (salt tablets) daily for several weeks. Two after each meal. Then, Mack began by cutting the tiny .1mg pill into quarters. He took 1/4 daily for a week, then 1/2 daily for a week, etc. He ultimately worked his way up to .2mg a day. The reason for this protocol is to find your therapeutic dose and not get the "headache from ****." Once your symptoms have pretty much abated, you've found the dose that works for you. Florinef in too high a dose can cause a horrible headache.During this process, it is important to have your doc keep track of your electrolytes as florinef can ause you to lose potassium. Mack supplements with a daily slow release 8mg. (The Thermotabs also have potassium.)I'd be hapy to post or pass along to you information from Dr. Rowe describing this protocol that you could share with your doc. My son was forced to drop out of school because he was fainting throughout the day. He was unable to focus or think because of the cognitive fog. Within a year, he is back at school fulltime and just brought back his first report card since florinef- straight A's. I pray this is your miracle, too!Julie Quote Link to comment Share on other sites More sharing options...
Jan Posted October 28, 2006 Report Share Posted October 28, 2006 I think people with Addison's disease take Florinef all their lives. It isn't like Prednisone even though it is in the same class. I have been told by many different doctors it doesn't have any long term side effects like bone loss etc.I have been on .2 mg for the last 8years and it has really helped. I have to take it with food or a glass of milk or I get stomach pain. Quote Link to comment Share on other sites More sharing options...
juliegee Posted October 29, 2006 Report Share Posted October 29, 2006 John,As far as timing, take it with food. Mack takes .1mg in the AM and .1mg in the PM. Even when his dose was smaller, he split it up to keep the dose constant. Julie Quote Link to comment Share on other sites More sharing options...
john redman Posted October 29, 2006 Author Report Share Posted October 29, 2006 My doc never mentioned salt pills or potassium or half a pill or anything. I really glad you posted.Does you son take the thermotabs all at once?JohnHi John,Florinef has been a wonder drug for my son. Do some more research. It has steroid properties, but none of the negative side effects of a true steroid. My son's doc, the incomparable (we think!!!) Peter Rowe of Johns Hopkins had Mack start slowly with florinef. He first began by taking 6 Thermotabs (salt tablets) daily for several weeks. Two after each meal. Then, Mack began by cutting the tiny .1mg pill into quarters. He took 1/4 daily for a week, then 1/2 daily for a week, etc. He ultimately worked his way up to .2mg a day. The reason for this protocol is to find your therapeutic dose and not get the "headache from ****." Once your symptoms have pretty much abated, you've found the dose that works for you. Florinef in too high a dose can cause a horrible headache.During this process, it is important to have your doc keep track of your electrolytes as florinef can ause you to lose potassium. Mack supplements with a daily slow release 8mg. (The Thermotabs also have potassium.)I'd be hapy to post or pass along to you information from Dr. Rowe describing this protocol that you could share with your doc. My son was forced to drop out of school because he was fainting throughout the day. He was unable to focus or think because of the cognitive fog. Within a year, he is back at school fulltime and just brought back his first report card since florinef- straight A's. I pray this is your miracle, too!Julie Quote Link to comment Share on other sites More sharing options...
OCsunshine Posted October 29, 2006 Report Share Posted October 29, 2006 I have been on Florinef (between .1 and .05mg, depending on my need) for over a decade now. I'm 25 years old. It has been a wonderful help for me (in combination with a beta blocker). The only side effect I have had is a Potassium deficiency and I just take a Rx supplement (Klor-Con) to counteract it and I don't have any problems. Quote Link to comment Share on other sites More sharing options...
juliegee Posted October 30, 2006 Report Share Posted October 30, 2006 No, he takes 2 Thermotabs following each meal. They are easy to tolerate and help (in and of themselves) with POTS.Julie Quote Link to comment Share on other sites More sharing options...
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