Mikayla Posted June 19, 2023 Report Share Posted June 19, 2023 Hello, I have Pots, CFS, ehles danlos, depression, anxiety. I have a tendency for very low blood pressure and resting HR... My hr only jumps between 30 and 50 bpm on standing but I find the dizziness, fatigue and brain fog very debilitating most of the time. I have tried a lot of things but not really improving. I tend to have bad side effects to all meds I have tried. I have been prescribed fludrocortizone recently. I have a history of anorexia and am very concerned about the listed side effect of weight gain and Edema. I am interested to hear how common these side effects are and how long they take to come on... And also wondering if there are bad withdrawals if I decide to stop taking it? I would appreciate another perspective on it besides my doctor.. she doesn't realise how bad it is to take something that ends up making me worse when I am already feeling terrible. I hope it's ok to ask this here. I am just feeling alone, frustrated and confused and scared of side effects making things worse Thanks everyone. 🙏 Mikayla Quote Link to comment Share on other sites More sharing options...
Macho319 Posted June 19, 2023 Report Share Posted June 19, 2023 Hi Mikayla! I noticed side effects right away that for me were worse than my norm. I took the medicine for maybe two weeks and then stopped. I didn't experience any side effects from stopping abruptly either. As you know everyone is different. I would suggest keeping track of how you feel, keep your doctor informed and if it makes you feel worse, stop. If you decide to stop just run it by your doc to see if they suggest tapering off or stopping cold turkey. I'm sorry you're feeling bad and I hope these meds can help you. Take care! Quote Link to comment Share on other sites More sharing options...
Mikayla Posted June 20, 2023 Author Report Share Posted June 20, 2023 Thanks So much Macho 🙏 The more I research it the more scary it looks. The online recommendation is not to take it for more than 3weeks and it says long term use can cause bone weakening in the elderly. Probably good you stopped taking it! I hope you found other ways to improve your symptoms. I might still give it a try but still not sure. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted June 20, 2023 Report Share Posted June 20, 2023 Hi Mikayla There have been a lot of past discussions about this medication. It is commonly prescribed for POTS/dysautonomia. Here is one discussion that may be helpful: https://www.dinet.org/forums/topic/31938-is-fludrocortisoneflorinef-a-brutal-medication-to-take/ Quote Link to comment Share on other sites More sharing options...
Mikayla Posted June 21, 2023 Author Report Share Posted June 21, 2023 16 hours ago, MomtoGiuliana said: Hi Mikayla There have been a lot of past discussions about this medication. It is commonly prescribed for POTS/dysautonomia. Here is one discussion that may be helpful: https://www.dinet.org/forums/topic/31938-is-fludrocortisoneflorinef-a-brutal-medication-to-take/ Thanks Momtogiuliana, That is helpful , I appreciate you sharing that info. Quote Link to comment Share on other sites More sharing options...
Macho319 Posted April 2 Report Share Posted April 2 @Mikayla Update on this. The Cleveland Clinic put me back on this in November 2023 and it put me into acute heart failure! I knew something was wrong because I felt awful and short of breath. I immediately stopped it after the test and repeated the test in February 2024 with normal results. I have no idea why it put me into heart failure but I won’t EVER touch that drug again as long as I live. Quote Link to comment Share on other sites More sharing options...
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