At What Point To Try Florinef?

[mkoven]

My ans doc said that florinef would be the next thing to try. It's my call though.

Here's the situation. There are days when I feel almost normal. I have midodrine that I take fairly regularly, but less on good days. however, when i'm in a bad stretch--which can be a day here or there, or weeks, it's not enough. I wish I could do florinef for just a week here and there, instead of a long-term commitment.

For example, December and January were awful. Just sitting up brought on all my symptoms and I could barely function. then things settled down. I guess I'd like the option of doing florinef for short periods, but can't tell if people here do that.

[flop]

Hi, florinef is a medication that takes several weeks for the effect to build up and also several weeks for it to wear off again. Unfortunately that means it is not suitable to use "now and then" but you may find that a small dose regularly is beneficial. Some people use regular florinef but take their midodrine only as needed (midodrine only acts for a few hours). As usual we all seem to react differently to meds but florinef is one that is worth trying to see if it suits you.

Flop

[juliegee]

I'm sure Flop's info is "textbook" correct, but check with your doctor to see if you could use florinef on an as-needed basis. I recall getting a pretty instant boost when I took it. I felt much better almost right away. Of course, I combined the florinef with salt (Thermotabs) and lots of fluid. All 3 must be present in order for it to work. Let us know what he/she says.

Julie

[juliegee]

Oops, thought of one more thing! My son's ANS doctor lets him up his florinef as needed, like when traveling etc. When Mack's schedule is off, he becomes much more lightheaded. The doctor's only caution was to keep an eye on his BP. (Mack took .2mg for years and now only takes .05mg to maintain.) Talk to your doc!

Julie

[hollie]

Hi - I just got dx in Feb. Had it for years... finally getting answers! I actully started in Feb on Florinef. It only took a couple days and I felt better - pretty much normal. But then I slowly started getting worse again. I never returned to the worst point, but I wasn't satisfied with it either. I then saw a specialist and asked him what's next. He told me florinef is actually for that purpose. Meaning... it's supposed to bring you up out of a funk quickly, but is not supposed to be for long term purposes. He said it loses it's effect after while and you level off. I don't know if this helps you, but it helped me deside what the next step was.

Hollie