fitnesskelly Posted September 2, 2015 Report Share Posted September 2, 2015 Doc prescribed me Florinef. She mentioned Midodrine also, but said it's used for severe fatigue. I don't have severe fatigue. So she went the Florinef route. I came home and read about Florinef and it doesn't look like it's supposed to help with orthostatic intolerance.Does anyone have experience with it and did it help you? Did it help with any pain you have, esp the coat hanger pain?I'm also concerned about side effects (it's a steroid)? For those with experience, what kind of side effects did you have?Finally, neither doc nor the pharmacy told me how to take Florinef. I'm reading I should slowly dose up to the full prescribed amount. Do I still add salt to my water too?Thx! Quote Link to comment Share on other sites More sharing options...
toomanyproblems Posted September 2, 2015 Report Share Posted September 2, 2015 I've taken florinef for many years for Addison's. It does help OI. When I first had distinct POTS symptoms in 2007 an increase in florinef stopped the dizzines and passing out. I had a pretty good remission in symptoms for several years. Now playing around with the dose doesn't seem to help.I wouldn't count on it to help pain.It is a steroid but a very weak one compared to, say, predisone. I wouldn't worry about steroid effects. It can cause swelling and possibly high BP if you take more than your body needs. As you increase the dose, you should probably decrease your salt intake since it helps your body hold salt. The ideal would be enough florinef to allow you to just need a normal amount of salt intake. Quote Link to comment Share on other sites More sharing options...
Katybug Posted September 2, 2015 Report Share Posted September 2, 2015 Florinef is a minerocorticosteroids, as opposed to prednisone, which is a glucocorticosteroid. Their action on the body is quite different. The general point of taking Florinef for OI is that it helps build blood volume by helping you retain fluid. Florinef can not work it's magic if the body doesn't have enough salt which is part of the mechanism it uses, so salt intake is important. A common side effect of florinef is headache. I can take .1mg 1x/day but an unable to take it 2x/day because it causes a headache for me at that dose. However, it does help me stay more hydrated and reduces my polyuria. It took me about 4 weeks of taking this medicine to realize I was having some positive results from it. It hasn't been a cure all for me, but it definitely helps.As for Midodrine, my understanding is that Midodrine is specifically for increasing blood pressure for those that have failed to get an increase from other sources. I've never heard of it being used to tr eat fatigue although if it increases a person's low bp, I would imagine any fatigue associated with that issue would improve as a secondary benefit. I have low bp at times and also narrow pulse pressures. I did try Midodrine but it didn't help me. (It also didn't cause any side effects.) But, my low bp seems to be somehow related to my inflammatory issues, so it seems most treatments targeting just my bp are not very effective because they aren't targeting my root cause. Quote Link to comment Share on other sites More sharing options...
fitnesskelly Posted September 2, 2015 Author Report Share Posted September 2, 2015 Thanks for the replies. Good to know about Florinef. I had a bad experience with a short course of prednisone after a nasty workout injury - my arms swelled up so much from the injury, I couldn't bend them. It was incredibly painful and I was desperate, which is why I let the doc give me prednisone.My theory on the coathanger pain is that if I get the blood back up high, that pain will subside or go away. Fingers crossed. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.