flop Posted January 7, 2009 Report Share Posted January 7, 2009 Oops - just realised that I had only read the first page of the topic when I wrote my reply, you are obviously already weaning off the florinef!Flop Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted January 7, 2009 Report Share Posted January 7, 2009 Welcome!Hope you find some help with it soon! Quote Link to comment Share on other sites More sharing options...
janiedelite Posted January 12, 2009 Author Report Share Posted January 12, 2009 Just wanted to let you all know my BP's are somewhat improved, but most important I don't have that crushing chest pain and headache like I did. I'm down to 0.05mg florinef every morning, and will hopefully be off it entirely by the end of the week . Thanks so much for all your advice!!!!!!! Janie Quote Link to comment Share on other sites More sharing options...
juliegee Posted January 13, 2009 Report Share Posted January 13, 2009 Hi Janie,I'm so glad you're feeling better!!! Is your BP lower now? Many here maintain on low does of florinef, like .05mg or even .025mg. If I remember correctly, you're going to Mayo (?) soon. When? Keep us posted on your progress.Hugs-Julie Quote Link to comment Share on other sites More sharing options...
janiedelite Posted January 13, 2009 Author Report Share Posted January 13, 2009 Hi Janie,I'm so glad you're feeling better!!! Is your BP lower now? Many here maintain on low does of florinef, like .05mg or even .025mg. If I remember correctly, you're going to Mayo (?) soon. When? Keep us posted on your progress.Hugs-JulieOverall my BP is lower. It still goes up (160's/100's) if I'm up for too long, but it doesn't stay up like it did before. HR is higher now, of course, but that comes with POTS. I have an appt at Mayo's autonomic dept 1/28. Also, I don't know if I was just in a bad episode, but I can talk and do little things without my BP going up with the accompanying chest pain. Felt like I was dying and couldn't do anything about it. I really appreciate all your help!!! Janie Quote Link to comment Share on other sites More sharing options...
juliegee Posted January 13, 2009 Report Share Posted January 13, 2009 Janie,So glad your Mayo appt. is soon. I just read yor signature line. You're the first person I've met here who gets chillblains too. Mine are awful. I've even been hospitalized for my Reynauds. What have you tried for relief? I'm worried because my 16 year old son is starting to really suffer with it too Good to find a kindred spirit!Julie Quote Link to comment Share on other sites More sharing options...
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