lgtaylor100 Posted December 18, 2011 Report Share Posted December 18, 2011 One of my doctors who had suffered from POTS and then recovered told me that Florinef really helped him. He said it made him have a lot more energy and feel that he could be fully functional. While I have a few good hours on some days I certainly feel very very far from fully functional. I am taking .1 milligrams in the morning. Would those of you who have had success with florinef be able to give me some specifics about how it is helping you? I know everyones' response to medication is different, but I am interested in how it has helped.Thanks,Lynne Quote Link to comment Share on other sites More sharing options...
songcanary Posted December 18, 2011 Report Share Posted December 18, 2011 It has increased my blood pressure in the morning just enough to alleviate the nausea and lightheadedness. A true godsend, at least for me. Quote Link to comment Share on other sites More sharing options...
juliegee Posted December 18, 2011 Report Share Posted December 18, 2011 I have used it intermittently in the past to get through very rough patches. It has been a godsend for me. I take it in the AM. I have almost immediate increased energy and hunger. (I have used it in conjunction with Ery-Ped a GI prokinetic- so that may help explain the hunger ) Prior to using it, I am totally bedridden, unable to eat & have extreme nausea. I end up stopping the florinef because over time it increases my BP & that makes me nervous with my family history of vascular blow-outs.) Quote Link to comment Share on other sites More sharing options...
Katybug Posted December 18, 2011 Report Share Posted December 18, 2011 It has upped my BP enough to make taking my Metoprolol possible. Although I still only get 2-4 good hours on a good day. Some days I'm still down for the count. Quote Link to comment Share on other sites More sharing options...
Christy_D Posted December 18, 2011 Report Share Posted December 18, 2011 For my son, it takes away his dizziness but nothing else. He stopped taking it in mid-October after taking it for almost 2.5 years straight. His dizziness has not returned and his face and ankles no longer look so puffy. I think it caused him to look puffy because of the retaining water. It never helped any of his other symptoms though. Quote Link to comment Share on other sites More sharing options...
abnel Posted December 19, 2011 Report Share Posted December 19, 2011 That's great news Christy that your son has been able to stop Florinef without the dizziness returning. I hope this improvement continues.I am slowly tapering down at the moment because Florinef is causing significant potassium loss the longer I take it which I suspect is exacerbating my breathing issues.In answer to your question Igail, Florinef made a huge different to my daily light-headedness and pre-syncope.I suspect it helps because I am hypotensive and probably also suffer lack of blood flow to the brain like most other POTsies. It has increased my blood pressure and blood volume which I think helps me feel not as faint or light headed. It's also helped lower my resting heart rate a little but by the same token I also seem to have experienced much higher heart rate "spikes" since taking it (again, probably an electrolyte/potassium loss issue). Quote Link to comment Share on other sites More sharing options...
kmichaelson Posted December 19, 2011 Report Share Posted December 19, 2011 Hi Igail, I took Florinef for about 6 weeks recently and wondered the same thing! I would feel relatively normal for a few hours in the evening, but it didn't do anything to help me in the morning or early afternoons. When my doctor originally prescribed Florinef, he told me that withing a month I should be feeling 'back to normal.' I think I kept trying to convince myself it was helping, but on my follow-up appointment my doctor was good about making me tell him honestly if I thought it was helping or not, so I said it wasn't and he recently put me on Midodrine instead. This seems to be making a dent in my symptoms so far, which is very exciting because nothing has helped me at all for over two years! Sorry if I'm getting off your original topic a bit, but I just wanted to let you know my experience since I was in a similar situation to you. I just don't think there's a one-size-fits-all solution for everyone with POTS, and Florinef wasn't the one for me. Good luck finding the right thing to help you feel better! Quote Link to comment Share on other sites More sharing options...
lgtaylor100 Posted December 19, 2011 Author Report Share Posted December 19, 2011 Thanks Everyone - Dizzyblonde -I have only been on Florinef for 2 and a half weeks. The doctor also upped my midodrine at the same to 10 mgs.. I do feel better for a few hours some days but I think it's the increased midodrine. Also it's not much of a difference. The doctor did not tell me how long to stay on it and will not take phone calls.( see my other recent post) My primary said to stop taking it. Maybe I will try for another week and a half and see if I feel better then.Were you able to just stop taking it or did you have to wean off of it?Lynne Quote Link to comment Share on other sites More sharing options...
kmichaelson Posted December 19, 2011 Report Share Posted December 19, 2011 Hi Lynne, my doctor told me it would take 2-3 weeks for the medication to start making a difference for me, and I think I had been on it for about 6 weeks by the time I told him it wasn't helping. At that point, he told me to stop the florinef--he didn't wean me off of it or anything--and begin the midodrine. (I think I was taking .1 mg of it.) I remember I did feel extra bad for a bit after quitting the florinef and probably before midodrine started kicking in, but I don't know if it was due to meds or just a bad phase for me.That's so annoying your doctor won't respond to your calls! Do you have a follow up appt with him or her soon? I think for me the most frustrating thing about trying new meds is that I would get my hopes up, wait 4-8 weeks to see if something worked or not, then check in with whatever dr. I was seeing at the time, be told to try it some more or get a new med, and just repeat the same pointless process! I felt like I ate up years with this wait and see approach, but I guess we can only try so many things at a time.Anyway, I don't at all mean to be dispensing medical advice of course! I just wanted to let you know my experience of it not working for me in case that's what you're experiencing too. Quote Link to comment Share on other sites More sharing options...
Katybug Posted December 20, 2011 Report Share Posted December 20, 2011 Lynne,I don't know if you read the thread I posted a couple days ago about how much salt to take in but it is much more than my doctors told me about. The kind folks here basically said 5-10 grams daily is what was recommended to them. That takes some effort to get that much salt. The Florinef will only work by increasing both salt and fluids, so I'm thinking I might not have given the Florinef enough salt and fluid to really work properly. I've probably been getting 2-3 grams daily but I'm sure if I up the salt, I'll also want more fluid. Just a thought before you stop taking it...Katie Quote Link to comment Share on other sites More sharing options...
E246 Posted December 20, 2011 Report Share Posted December 20, 2011 I have just started Florinef - what a difference. But could only tale a 1/4 of a 1 mg tablet any more increase blood pressure to much.I knew within am hour that i felt better.Do you still need to salt load with it? I was not given much advise as prescription came through GP.Does anyone know what other meds you can mix with this? Quote Link to comment Share on other sites More sharing options...
Katybug Posted December 21, 2011 Report Share Posted December 21, 2011 I was specifically told by my cardiologist to salt and fluid load with the Florinef (I just didn't realize how much.) If you google Florinef, most of the drug websites will give you a list of any meds you should NOT take with it. Quote Link to comment Share on other sites More sharing options...
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