Florinef crash?

[Megscd]

Started Florinef 0.05 mg 5 days ago and was on top of the world for 3 days, like instantly. I was full of energy and my POTS symptoms nearly disappeared. I felt fantastic. 4th day: felt anxious and moody, more tired. 5th day: disaster. It was a regular bad POTS day and by last night I was so dizzy I fell over (happily, onto my couch), could barely keep my eyes open, and developed weird elbow and knee pain (even the skin OVER my joints hurt to touch). Brain fog was pretty bad and my blood sugar got up over 200. (I’m prediabetic so I worry a lot about my blood sugar.) I had a killer headache but BP was dead-on normal, 120/80. My heart was pounding hard and increased to 110 when I was sitting there doing nothing, and typically my resting rate is in the 70s and goes up to 120 when I stand up and start doing anything. Finally, I had increased nausea and abdominal pain compared with my usual (suspected) gastroparesis, and my mind was racing...awful, awful anxiety and I usually don’t have that.

Teh internetz indicate that Florinef should not have any major effects that quickly, that it takes weeks for an effect to be noticed, so IDK what to make of this. The side effects I experienced are clearly listed for Florinef and some are in the “really bad nasty side effects you should tell your docto about immediately” section, so I called the on-call dr to report I was feeling notably and spectacularly awful. He felt I was a diabetic with the flu and informed me that Florinef would not raise my blood sugar. (!?) I don’t know why I bother asking doctors about anything, some days. 

Does any of this make sense to you experts out there? Has anyone else felt like Florinef worked like magic for a few days and then turned on you? I’m not terribly excited about taking any kind of a steroid to begin with. I was willing to try it and if it kept me feeling so good I’d find a way to deal with other possible side effects. But if these situations ARE side effects of Florinef, which my gut tells me they are, I’m going to say thank you but no, I’ll just return to my normal POTS and bypass the increased pain and mood swings, as well as the blood sugar increase. I’m nearly phobic about diabetes and definitely do not want to add that to my POTS. No thank you. 

[yogini]

What you read is correct. There are crashes with POTS.  Usually florinef does not cause a sudden crash and takes some time to kick in, though you could certainly start feeling side effects in a couple of days.  I think the most common side effects are increased BP and headaches, sometimes anxiety. Also sometimes it takes  a few weeks to adjust to a drug and the strange side effects you are experiencing might go away.  But we all react in different ways and if you have diabetes, most people here wouldn't know about that. If you are having side effects, it's best to check in with your doctor or pharmacist.

[katyroq]

I am not an expert but I think it makes a lot of sense that when you start taking a steroid hormone that you may or may not be deficient in, there would be some crazy results right away.  Look at the Wikipedia article for mineralcorticoid. There is a nice graphic showing all the hormones and how they are chemically related. You're doing a lot more than adding a single drug... You're messing with a whole interconnected system.  https://en.m.wikipedia.org/wiki/Mineralocorticoid

That said, florinef has been the best thing that's happened to my POTS and has literally changed my life. I started on 0.1 mg in October.  I had a similar experience to you where I felt great (so much energy) for the first couple days and the third day was horrible with symptoms. I had a constant weird cough as well. My doctor let me stop taking it for a few days and things went back to normal. I restarted the next week and the doctor told me to stick it out for 1 week no matter how bad I felt. The first few days I had bad anxiety and palpitations, but not as bad or as many symptoms as the first time. Then I started feeling more normal but with the energy.  It took a good 2 months before I didn't feel any side effects but those were minor enough compared to the energy and ability to stand. 

I have had a couple of crashes the first few months. I connected those to low potassium because eating /drinking tons of potassium rich foods /drinks was all that helped. One of the times I got my potassium levels checked 3 days later and they were low normal when normally they are high normal. So no supplements prescribed but I'm sure the differential is why I felt bad. Oddly crashes also seem connected to the female hormone cycle since they happen once a month. and that 3rd awful day of florinef was probably that exact day. This month (4th on florinef) I just had a super tired day like I used to have all the time with Pots. So even now things are equilibrating. 

Anyway I hope my experience can help you some. Like you, I couldnt find much on the internet about my response to the florinef. But it ended up working for me. Everyone is different, so definitely be in consult with your Doctor/pharmacist as you decide how to proceed. All the best! 

[Always hoping]

I didn't have immediate positive effects from Florinef but I know it helped me a lot after a few weeks.  I also wanted to mention that it can increase your blood sugar and decrease your potassium.  I've been on it for several years (very low dosage of .05mg) and I haven't had issues with either, but my doctor does monitor those levels.

[BuffRockChick]

When I started florinef, I tracked my daily sodium and fluid intake.  I was able to see that florinef had no effect at all if I didn't get a minimum of 4 grams of sodium in a day.  Over 4 grams of sodium, I got beautiful symptom relief.  However, I needed an additional medication (midodrine) to help with blood pooling too.

[lele]

Hi Everyone,

Any updates on how you are feeling with Florinef?