Ans Doc Appointment

[mkoven]

Just came back from seeing my any specialist in Chicago. She really thinks that treating my sleep apnea will improve many things, though she warned me not to think of it as a magic bullet. She says that many of her patients have apnea and improve once that is treated. I see the sleep doctor this coming week, and will push for being aggressive.

If I don't improve sufficiently, she wants to add .05 of florinef. I'm a little hesitant. It seems many people tolerate it well, here, but as I was going through old posts, it also looks like it's not problem-free. In particular, it looks like people have a hard time stopping it. I"m most concerned about my bones ( I already have some dead bone in one ankle-ow!), my weight, my mood, and headaches. Her response is that it shouldn't be a problem at such a low dose. But, she wasn't pushing it. So let's hope apnea treatment helps. (I know florinef isn't like prednisone in many ways, but I HATED what my body does on prednisone--anxious, tachycardic in a way that I'm normally not, can't concentrate, yeast infections, starving, shaky, and a nightmare coming off. )

I asked about trying another ssri. (I've had allergic reactions and twitching to a handful). She said that was an option, but as I"m on and will probably be switched to another anti-seizure drug, as well as klonopin prn for migraine-associated vertigo, she thought florinef would interfere the least and be the most helpful.

[flop]

Hi, if you do need to try florinef try not to worry about the side-effects. I have been told by several doctors that it doesn't have the bone thinning effect of the anti-inflammatory type of steroids (I have taken bucket loads of prednisolone over the years). Also weaning off fludrocortisone is not like weaning off prednisolone - twice I have taken prednisolone for months at a time and then it has taken me months to wean off going down by less than 0.5mg every week and still feeling very POTSy each time I lowered the dose. I have come off fludrocortisone once for a TTT and although I weaned over a month (doctors instructions) I felt no side-effects at all. Another time I had to stop it suddenly as it became impossible to get hold of and I ran out of tablets, I was without it for 2 weeks with no ill-effects.

Good luck with the sleep specialist, I hope C-PAP is right for you and gets you feeling better.

Flop

PS - I forgot to say that if you do gain weight with fludrocortisone it is almost always due to water retention. Whilst retaining water is why we go on it, if it is so much that it causes swollen legs it suggests that you need a smaller dose, stopping the florinef makes the weight gain from water go away pretty quickly too.

[MightyMouse]

sounds like you had a productive doctor visit. I know some of our members have reported that once they started with the c-pap, they were less exhausted during the day.

As for florinef and side effects--well, I never really had any other than perhaps the nosebleeds, and of course, high bp until we got the dose straightened out. Others have reported various side effects that went away after stopping--usually a headache, or bloating from fluid retention. None of that was enough for me to stop taking it. I'm now on an 1/8 of a tablet (.01) every other day aka .0125 mg...minuscule dosage, really.

Nina

[ajw4790]

Hope the upcoming appmt goes well and you find meds that work for you.

I have not tried Florinef yet, but they have discussed it as next on the list.

Good Luck!