Florinef And Supplements?

[shan1212]

I've had a script for florinef since the summer, but I've only rarely taken it. (I am breastfeeding, and while I was told it was fine by Dr. Hale's hotline, I was still wary because of the concern about steroids causing growth suppression in infants). So anyway, I've only taken it when I had to fly or felt especially symptomatic.

But then over the last few weeks I've taken it more and more, and now I'm taking it every day, and I really see an improvement. I find upright posture much less fatiguing, and feel more like my old self. I'm not concerned about my daughter at this point because I'll be weaning her soon, she's much bigger than she was a newborn, etc. Plus, again, Dr. Hale said it was fine.

However, I'm a little nervous reading about how other people use salt supplements and need to make up for lost potassium. Can people on Florinef tell me specifically what supplements they use? I take Nuun tablets, and I have salt pills that I can take. My cardiologist didn't really give me specific instructions so I'm wondering what other people do.

Has anyone found it to be less effective over time? I felt awesome for four days about two weeks after I started Zoloft, but then that went away. I still feel like it raised my lows (I haven't needed emergency help caring for the girls since I started it, but I still occasionally feel too ill to do anything beyond the bare minimum), but those glorious four symptom-free days haven't returned. So I guess I just want to know if the rug is going to be pulled out from under me with Florinef too.

In any case, I feel hopeful, knowing that the drugs I've tried have helped, and that if I need more help, there are still more things to try, right? And once I wean my daughter, I won't feel nervous trying new medications either, nor will I worry that a trip to the ER will be problematic with her nursing schedule.

Anyway, your specific florinef supplements are much appreciated!

[roxie]

Some take thermotabs for salt but they can be hard on your stomach.

There is a RX potassium supp but I don't remember the name?

I am on Florinef and I work hard to get it through my good. It's a lot of worl but I was always told its absorbed better.

[SaraC628]

I am taking Florinef also. While on .1mg I felt no difference, but after going up to .2 mg per day I had about 10 days that were pretty great. I wanted to run out the door everyday. I still could not drive and I still needed a nap each of those days. I then got a sinus infection and have not been back to that better feeling since. I am not on salt tabs or potassium though. I am seeing an autonomic special

[SaraC628]

*specialist next week and will be asking him if my potassium levels should be checked. I don't add salt to everything, but I don't worry about my salt intake either.

[shan1212]

Thank you guys! I'm going to try to be more conscious of adding salt and to eat a banana every day.

[YolaInBlue]

I've been on Florinef for over 4 months now. I wouldn't be able to function without it. I'm taking 0.075mg a day. They started me on 0.2 at first, but that gave me horrible headaches and blood pressure spikes. My cardiologist changed it to 0.1mg a day, but it still was too much. With 0.05 I was back to having episodes. 0.075mg seems just right. I split it into twice a day: half a pill in the morning and a 1/4 in the evening. I was taking salt pills with it at first, but my stomach hurts even after half of a salt pill. I just try to eat something salty, like pickles or miso soup. I use Himalayan pink salt on food. It tastes great. If my blood pressure falls very low (90/55 is common), I just add this salt to a glass of water and drink it. I also drink 1 unflavored Pedialyte or 1 liter of Nuun electrolyte solution a day, in addition to water, soups and tea. I always make sure to drink 2 glasses of something and eat something salty right after I take the pill. I have good and bad days but nothing close to how bad it was before the Florineff.

I asked my doctor to test my potassium levels after about a month on Florinef. They were slightly low, so he prescribed 10meq potassium chloride. I also bought a bottle of liquid calcium/magnessium/vit.d and take a teaspoon a day. You can find it in health food stores. I take a multivitamin, too.

Florinef still works

[Kate2011]

I had a potassium problem when I was on florinef (i was technically on fludrocortisone but it's the same thing). I only started experiencing a problem after my dose was raised to dangerous levels though, the cardiologist I saw kept upping my meds to reduce my symptoms until I was taking about 6 times the recommended dose. (He then told me that if that high a dose didn't fix my problem I must have Munchousens.) It took going back to my PC to get a blood test that revealed that my potassium levels had dropped dangerously low. We added potassium supplements, but fludrocortisone never seemed to work for me so eventually I stopped taking it. (My PC and I decided to try to keep me on it to see if once my potassium levels stabilized I would have some improvement. The symptoms I experienced with the potassium deficiency were very similar to my dysautonomia symptoms so we could never really tell why I was feeling so awful.)