Mad Love For Florinef - 5 Weeks In

[AllAboutPeace]

I just wanted to give an update after 5 weeks of Florinef, for anyone who may be interested or considering trying it. I had lots of hesitation about starting meds and after 10 months of very little to no improvement (and being housebound, exercise intolerant, no good days, etc), I tried Florinef. I started with 0.1 dosage daily.

Week 1: I felt some chest flutterings at times, some extra dizziness, some abdominal discomfort, and no immediate improvements. On the fourth day, I had a brutal headache, so the next day I took 1/2 pill, then bumped back up to 0.1. I've not had a headache like that since. By the end of the week, I noticed a slight improvement in the extreme fatigue (i.e. I found I could do a little more without being flatout and needing my head supported).

Weeks 2-3: no noticeable improvement beyond the initial improvement in the level of fatigue. I was able to start doing short walks up the street and noticed I didn't have to take as many squatting breaks. I began to feel quite bloated all the time and weight gain.

Week 4: I switched from 0.1 to .05/day to see if it would help with the bloating - which it did. I felt ready to try exercising on the upright stationary bike as opposed to the recumbant one (which I could only ever do 6 - 7 minutes maximum at a slow and easy pace). I was shocked when I could do 15 minutes at a good pace!! Amazing! I was dizzy afterward and had to go to the couch but not to the extreme that it was before. Also, before, my heart would react with irregular rhythms, etc., but after laying down for a little while and some water and salt, I was ok to get up again. A few days later, as I was on the bike, I started to feel a strange sensation and after I figured out what was happening - I realized I was sweating!! Amazing...again!! A normal physiological reaction! I've also been able to do very light weight (2 1/2 pounds) arm/back exercises which would have been impossible for me to do before. My blood pressure is coming up to good levels.

Week 5: I drove tonight! A short drive to my parents house and back, but it felt good. I was well hydrated and had napped today, so that helped. I was not able to drive at all before this due to dizziness, inability to process information, visual floaters, etc. so I never felt it was safe. I'm definitely not ready to start doing it all the time, but for the moment it is a huge accomlishment. I'm losing weight and the bloating.

So, I know I still have a loong way to go and I still feel "potsy" all the time, but at least now I can do some things, too. Two weeks ago, I felt like I was slipping into a big dark depressive hole and couldn't see a light at all. I felt like a total stranger when I looked at old pictures of myself, so the glimpses of normalcy are huge for me right now. Also, I am kind of kicking myself for not trying this sooner... I only wish it helped everyone else too.

[spinner]

Great news. Glad youre monitoring the right dosage and taking it step by step. Anytime somebody is given part of

their life back its a big victory.

[hippychic258]

Glad it is working for you that is very encouraging! Do you have any tremors, head pressure or shaking on the inside feelings that it may of helped?

[issie]

AllaboutPeace,

So happy to hear that you are feeling better. Hope things keep going in the right direction.

Issie

[HyperPOTS8]

Hippychic, I had tremor and daily hyperadrenergic episodes that included shaking/shaking chills that completely resolved when I got my volume status corrected with Florinef and salt tabs (I was shown by blood volume analysis at mayo to have severe hypovolemia).

[AllAboutPeace]

Hippychic,

I did have those symptoms earlier on in my illness, but they have tapered off over the last few months. I was actually just wondering whether this med would have worked when everything was in the extreme phase for me or if those things needed to settle on their own first - of course I'll never know, but I wish I had tried. The key changes I would say have been with the extreme fatigue, ability to be upright longer, and some exercise tolerance.

I just saw HyperPots response, so hmmm...it may well have helped. When I finally tried it, it was partly based on the fact that IV saline was very effective for me, so I thought I might be someone who would benefit from the volume expansion.

[puppylove]

I'm so happy for you! I hope you continue to feel better and better!

[corina]

Great news AllaboutPeace!!! And thanks for your detailed info on how and when it worked for you, that might be of help to others too.