DizzyGirls Posted March 8, 2018 Report Share Posted March 8, 2018 I was sending a message to my daughter's neuro PA regarding a standard refill for her Florinef rx. She asked how long she had been on it. I told her since 2015. She said they don't usually keep their patients on it more than 3 years. After that, they would have to find something else to control her bp. I was thinking what??? You've got to be kidding me! Anybody know why the time limit or ever been told the same thing? Quote Link to comment Share on other sites More sharing options...
Always hoping Posted March 8, 2018 Report Share Posted March 8, 2018 I haven't heard of this but I will ask my EP about it at my appointment on Friday! Since I lack aldosterone (which Florinef is a replacement for), I've been given the impression that I am on it long term. I know my PCP was concerned originally about my being on it because it is a steroid, but then I was told that's it's not "that kind of steroid". Interesting. Quote Link to comment Share on other sites More sharing options...
Clb75 Posted March 8, 2018 Report Share Posted March 8, 2018 I’ve been on it for 4 years now, no one has mentioned a time limit , I wonder what the reasoning is? I was told the same thing about it being a “different” type of steroid. I forget which is which, one is a glucocorticoid and the other is a mineralcorticoid. Florinef doesn’t typically cause the problems regular steroids do such as diabetes, weight gain, osteoporosis etc. Maybe the doctor is concerned that it replaces the natural ability to produce aldosterone? It’s a shame that once you find something that works they want to take it out of the mix. Your daughters have been through so much already. I don’t think the doctor understands that finding a new med could really destabilize what little stability they have and upset such a delicate balance. I hope they reconsider. Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted March 8, 2018 Author Report Share Posted March 8, 2018 Yes, I don't get it. She only takes 0.1mg a day. It's a teeny dose and it works. I am so frustrated because it is just going to upset the apple cart. She's already on a new med right now for Dopa Responsive Dystonia, I don't want to switch now. We won't know what's causing what. Quote Link to comment Share on other sites More sharing options...
Jan Posted March 8, 2018 Report Share Posted March 8, 2018 I have been on it for almost 20 years. People with Addison's disease are on it for life. I have assumed I would be on it for life. I have never heard of a time limit. Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted March 8, 2018 Report Share Posted March 8, 2018 Dizzy, I've been on it for 10 years. This makes no sense to me. I would push for a more detailed explanation. Your girls have been through too much to now go through an experiment because of some policy. I hope you get this worked out. Kim Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted March 9, 2018 Author Report Share Posted March 9, 2018 Heard from the PA today, she apologized that I had gotten the "impression" that they would just stop my daughter's medicine. Apparently, she was only telling me of the side effects and general effects of the medicine (there were none in the message at all) and that they would never stop her medicine without consulting us first. She said she would see my daughter at the end of the year and we could discuss it then. Seems I got the wrong idea about what she was trying to do (biting my tongue right now). Surrrrre she wasn't going to change her meds. Nice try. Not sure what she was trying to pull, but seems she's backed down for now. Hopefully we won't have any problems by the end of the year. Whew! One problem averted, 99 more to go! It is nice to know that there is nothing wrong with being on Florinef for more than 3 years. If she tries this again, she will have to give us a more detailed explanation for the "much needed change". Thanks everybody for your comments and support!! Quote Link to comment Share on other sites More sharing options...
Pistol Posted March 9, 2018 Report Share Posted March 9, 2018 You go, Mama bear!! I do not EVER let anyone change my meds unless it is approved by my doc and me. Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted March 9, 2018 Author Report Share Posted March 9, 2018 Ha Ha! I've been referred to a Mama Bear a few times. It's a compliment! It never ceases to amaze me that as soon as you find something that works really well, they want to go and mess it all up. We seem to have bought some time, though. Quote Link to comment Share on other sites More sharing options...
yogini Posted March 10, 2018 Report Share Posted March 10, 2018 It is a steroid which is hard on the body. I can understand why your doctor would want to try something else, especially if she is young. I have heard that before. You may want to do some google research on florinef and maybe schedule an appointment with your doctor to talk through. Quote Link to comment Share on other sites More sharing options...
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