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Long Time Florinef Use and Paradox Effects


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Hi All ? 

I have suffered with Pots since 2008 and diagnosed and medicated in 2011 with Florinef. Just in the last month I have had a severe relapse which has bedridden me. I have been racking my brain trying to figure out what may be causing it. Most of my symptoms are similar to POTS but I have new ones like extreme muscle weakness, drowsiness like being tranqued, vertigo episodes etc.. I also have what I think may be pelvic congestion. I have tried upping my med doses and its not helping like it usually does. Has anyone had Florinef especially go from being positive to negatively affecting their POTS? 

 

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I've been on florinef, as well as replacement glucocorticosteroid for many years due to having Addison's. In 2007 I suddenly developed what I now believe to be severe POTS symptoms that included passing out, once while I was driving. After unsuccessfully trying to find out what the underlying problem was, an electrolyte panel finally showed a low sodium. My PCP decided to up my florinef dose, which helped all of the POTS symptoms I was having, including the syncope. A POTS diagnosis was never entertained at that time. It was assumed my mineralocorticoid levels weren't sufficiently replaced for my Addison's. I had waxing and waning of POTS symptoms over the next few years, even though it was never as bad as the symptoms in 2007. Then the day I went to divorce court in 2013, my right ankle swelled. Quite abruptly on this one day, I also started having severe POTS symptoms and lost about 25 lbs over the next two months. My entire right leg and upper pelvic/lower abdomen area swelled significantly within a few months and I was eventually diagnosed with RSD/CRPS and POTS. My POTS symptoms were quite severe and have never improved much since then no matter what drugs I try, increasing florinef included. I have since also been diagnosed with Ehlers-Danlos syndrome and gastroparesis.

So yes, I suppose I'm someone for whom increased doses of florinef worked somewhat for a while but eventually failed to control my POTS symptoms. I can't say it's negatively affected my POTS symptoms. 

 

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Hi Brethor9 - sorry to hear you're feeling so much worse.

Did anything in particular happen right before the flare? Travel? Motion? Flu? Just wondering about a trigger. I know a simple cold can knock me back and tank my blood pressure, literally for months.

Another thought ... And it's just a thought but I'm wondering if you've had any headaches? Migraine disorders often go hand in hand with Dysautonomia. 

As far as Florinef I tried it but had an allergic response: headaches, insomnia, nausea, increased tremor and so cranky I couldn't stand myself. And that was after 4 days of 1/2 tab.

i hope you get some answers soon and feel better!

kaitlyn

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