Florinef

[Trying]

Daughter 22yo dx with orthostatic hypotension and CFS. She does not pass out, but feels head pressure/malaise when she stands, and she has no energy. Currently taking midodrine and cardiologist also prescribed florinef .1mg a day, which she has not yet started. She is mostly chairbound, had to quit college. This started with heavy, deadweight legs about 10 years ago. Salt/water/hose has not improved her debilitating lack of energy. 

Has anyone taken florinef and did it help with OI or lack of energy and did it help with being able to walk/exercise/live again??? If she gets the headache from h***, what do you take to relieve, ie, it is due to too much vasodilation (from the retention of water/sodium), so usual headache meds will not help? How long are you on it before you must taper off if you experience a bad side effect? I have read that some who have done alright with it for several months can then experience horrible side effects, and I was wondering if you had to stop it immediately, your aldosterone be suppressed and you would be in a crisis situation, so if you had a horrible side effect, you would have to taper slowly while still suffering? How long is the taper??

Did florinef help anyone recover their energy who had CFS?

[bombsh3ll]

Hi and welcome! I am sorry your daughter is suffering. 

Unfortunately my experience with Florinef wasn't good - even though I produce no natural aldosterone, the hormone it is meant to replace. It did nothing for my lightheadedness/presyncope or inability to stand, and it also gave me severe pressure type headaches. 

Many people have had fantastic things to say about it though so please do not be put off by my experience as we are all different. 

I would suggest starting on a very small dose, perhaps only quarter of a tablet, and slowly building up to the full prescribed dose. If headaches occur or worsen, call her doctor for advice regarding reducing dose/how long to persist. I found co-codamol eased it slightly but would not consider strong pain medication to be a long term solution just to mitigate the side effects of another drug.

Also be aware that although side effects can be experienced right from the first dose, beneficial effects can take days to weeks (some even say months) to show up, so if she is tolerating it well but not gaining any immediate benefits straight away, that is normal and not a sign that it will not work for her. 

My first ever dose also gave me really bad stomach pain, but I attribute that to the fact I was barely able to eat and had missed my usual acid suppressing medication due to being in hospital. Subsequent doses didn't cause this particular problem. If she has a sensitive stomach, taking with food or milk is a good idea, and making sure any acid reflux drugs aren't missed. 

Best wishes I hope it really helps your daughter!

B x 

 

[dancer65]

Hi 

I have CFS, VVS nd POTS . I took florinef to begin with it helped with OI in the beginning but not with anything else . If i remember righty i saw an improvement in dizzyness in about 10 days .I did experience worsening of headaches my dose increased over 12 mnths to 3mg a day but the benefits werent that significant for me so I was changed by cardio to midodrine which has helped me much more but even that had took time.

I have read many stories of florinef been a great success though.

I stopped florinef overnight as per cardiologis instructions I was ok but started midodrine immediatly.

Good luck !

 

 

[DizzyGirls]

Both daughters (20 and 22) take florinef 0.1mg a day.  They do very well on it and would be passing out a lot if they didn't have it.  The only time they have trouble with it is when the doc tries an increase.  It gives them bad headaches.  So, 0.1mg is all they need.

[Lily]

I take Florinef, and it plus the requisite salt and water loading made a huge difference in my level of fatigue and lightheadedness.  Granted, I have never been as badly off as your daughter, but I no longer worry that I won't be able to do my job.  I increased the dose gradually after reading a lot of anecdotes on the internet, and I did not have any side effects.  Also, my sister has been on Florinef for well over a decade (maybe 2) and as far as I know she has never had to go off of it.   I suppose it depends on individual differences.  Another important point I discovered is that the salt and water loading is more effective when I get some of it in the form of Pedialyte (or similar DIY mixture), about twice per week.