Is Florinef the way to go?

[Lisa]

Today I almost cried with joy at the doctor's office. After waiting for three years, I finally found a doctor who knows about POTS, and how to treat it. And it's all thanks to this web site!

I just have one issue. He is going to put me on Florinef, but he said I would probably gain weight. I am pretty skinney and am very scared at the fact that I will gain weight. Right now my symptoms are pretty horrible and exercising is so horrible for me to do, so I feel like if I gain weight I won't be able to lose it. I am only 17 years old, I don't feel like dealing with this, as I'm sure you guys don't as well. Is Florinef worth it?

I would appreciate any helpful response, and I wish you all well

Lisa

[Michelle Sawicki]

Hi Lisa!

So glad to hear you found a doc that understands!

Personally, I would have happily taken florinef if it had helped...even if I'd gained some weight. But that choice is yours to make....there are other drugs out there. Whatever you choose, I wish you the best.

Michelle

[MightyMouse]

Lisa, florinef was my miracle drug for several years. I only gained about 5 lbs--not too bad really.

Keep in mind that each of us may have a different set of medications and treatments that give the best effects...and, over time, what works for you may shift. I can no longer take florinef as it sends my blood pressure a bit too high.

Some people experience headaches when starting florinef. I didn't have any side effects other than the 5 lbs of fluid--but others have significant problems and stop taking the medication for that reason.

I'm so happy for your having found a knowledgeable doctor! Welcome to our board. Nina

[ethansmom]

First, let me say that I am so happy you've found a doc who understands your condition!! We've all been that route and I remember jumping for joy when I got home from my first appointment after the POTS diagnosis was finally made.

I have had good results from Florinef, and when I first started taking it, I had the same fears that you do, because I was 19 years old and had always been thin...but I have never gained a pound from Florinef in almost 2 years of taking it (other than when I was pregnant, but we won't count that ) I gained 80 lbs during pregnancy and lost it within 7 months, even on the Florinef...not to say that this will happen, but it definitely can.

A lot of people complain that they feel horrible from this med, and the same thing happened to me until I realized that it was just a dosage issue. I went from 0.1 mg daily to taking 0.05, and I feel a million times better now. I do get headaches about twice per week, but a little Motrin usually helps, and that's a small price to pay.

I think that a little weight gained is a very small sacrifice if you are feeling better on the meds. Just give it some time and I hope it works well for you!!