Trying Florinef

[xchocoholic]

So far I've only put a crumb of a .1 mg tablet on my tongue and I'm feeling dizzy. I respond quickly to meds in my mouth so that's not surprising.

Will keep you up on the effects. The goal is less OI of course. I HAVE to get off this freakin' couch.

Thanks to everyone who posted about using this drug. You got me to try it.

Tc .. x

Eta. I have Hashimoto's, with ok thyroid hormone levels so far, and adrenal fatigue, dx via saliva tests. I take .125 mg Klonopin for nocturnal myoclonus at bedtime. And a crumb, reduced from 1/4 tablet recently, off a Caffeine pill for energy as needed up till 3-4 pm.

 

[xks201]

I hope you put it under your tongue for sublingual absorption...Also you need to take salt with it as salt pills or salty fries or something or it is potentially worthless. Highly doubt it us making you dizzy.

 

[xchocoholic]

Lol. Yeah. I react quickly to drugs, including caffeine, if I allow them to dissolve on top of my tongue. Under the tongue doesn't work as well. Perhaps because I have mostly tori around my bottom jaw that extends under my tongue.

Thankfully the dizziness didn't last for more than a minute or 2.

I took Himalayan sea salt but thanks for the reminder.

So I went for my normal walk and felt better. It could be a fluke. I'll keep this updated.

Tc .. x

 

[SOC]

Lol. Yeah. I react quickly to drugs, including caffeine, if I allow them to dissolve on top of my tongue. Under the tongue doesn't work as well. Perhaps because I have mostly tori around my bottom jaw that extends under my tongue.

Thankfully the dizziness didn't last for more than a minute or 2.

I took Himalayan sea salt but thanks for the reminder.

So I went for my normal walk and felt better. It could be a fluke. I'll keep this updated.

Tc .. x

Could it be getting into your system TOO fast the way you're taking it? The pill form is designed to go through your digestive system with all advantages and disadvantages that entails. Circumventing that process by dissolving it in your mouth might be putting too much too soon directly into your bloodstream. Just a thought...

 

[xchocoholic]

Hi @SOC

I hear what you're saying and hope this works for me. I'm taking most of my meds this way now. Including Klonopin and Vicodin. I seem to handle them better and need less. I use children's liquids or chewables when possible.

I had a pretty good day. I got out for about 6 hours.

It's too early to say for sure that it helped but I didn't feel any worse. So, so far so good.

Tc .. x

 

[xks201]

I don't feel anything from fludro unless I do it sublingually.

 

[xchocoholic]

I don't feel anything from fludro unless I do it sublingually.

Cool. Tx.

I seem to be responding well.

I feel much better when I'm upright and I have more energy.

I'm feeling severely dehydrated, dry mouth and throat, if I don't drink regularly. And my fingers are pruning up regularly.

And I'm still getting a flood of blood rushing back into my upper body when I lay down. Hypoperfusion in reverse.

Any ideas why ? Is this an actual flood or is my body just perceiving it that way ? I thought this med stopped hypoperfusion.

I took .025 yesterday and today.. The plan is to stay at this dose for now.

Tc .. x

 

[xchocoholic]

Took .025 mg again today. This is definitely making me feel better when I'm upright. But I'm still getting a blood rush when I lay down. Possibly will raise dose tomorrow.

I still need caffeine to feel mentally alert. Probably to counteract Klonopin needed for nocturnal myoclonus. Fun fun.

I have pem today after having a busy day yesterday. Laying on the couch zoning out to whatever is on tv is perfect.

Tc .. x

 

[xchocoholic]

I'm taking a wee bit more. I'm such a chicken when it comes to taking drugs.

So far no miracles but I feel better when I'm upright. I actually enjoyed sitting up on the couch yesterday. Normally I don't feel well sitting.

My hr is still climbing like it did prior to taking this med. It reached 100 when I was making breakfast this morning but I wasn't done cooking yet so it could've gone higher.

My normal pots rate is 110 ish. The highest recorded hr on my holter monitor was 148 and I was power walking. The lowest was 48 while I was sleeping.

I was wondering if others who benefited from this med checked their bp and hr for OI on this med. If so how long before your OI numbers improved ? I'm waiting to see if my numbers improve.

Oh and I'm still getting a blood rush when I lay down too.

Tx .. x

 

[xchocoholic]

First diy pmttt --- no oh or pots ☺☺☺ still felt crappy tho.

Eta. Apparently I'm in pem mode today. Being upright for more than 15? Minutes isn't an option. I don't remember ever doing a pmttt during pem.

102/62 67 After being supine for an hour

While standing still

99/52 89 - 1 min
115/76 84 - 5 min => profuse sweating
108/78 87 - 13 min
112/84 90 - 15 min => petite mal and had to lay down

Currently supine waiting to recover from petite mal. I tried to get a snack but had to lay down. I lose my coordination when these happen.

I'll be doing this a few more times.

 

[SOC]

I'm taking a wee bit more. I'm such a chicken when it comes to taking drugs.

So far no miracles but I feel better when I'm upright. I actually enjoyed sitting up on the couch yesterday. Normally I don't feel well sitting.

My hr is still climbing like it did prior to taking this med. It reached 100 when I was making breakfast this morning but I wasn't done cooking yet so it could've gone higher.

My normal pots rate is 110 ish. The highest recorded hr on my holter monitor was 148 and I was power walking. The lowest was 48 while I was sleeping.

I was wondering if others who benefited from this med checked their bp and hr for OI on this med. If so how long before your OI numbers improved ? I'm waiting to see if my numbers improve.

Oh and I'm still getting a blood rush when I lay down too.

Tx .. x

FWIW, I had to add a medication for tachycardia on top of the Florinef to get the best effect. I tried both alone with a small effect from each, but it took both together to make a big difference in my ability to be upright for longer periods of time.

My BP and HR both decreased on Florinef plus tachy med. Ordinarily docs expect BP to increase with Florinef, but I had mildly increased BP probably as compensation for low blood volume.

I saw a small effect with the Florinef within a week or so, I think. It was months before we got the dosage right, added the tachy med and I finally felt significantly better.

ETA: Are you also drinking 3-4 liters (quarts) of water with 2 of them electrolyte water? Are you fluid-loading at bedtime and in the morning?

 

[xchocoholic]

Hi @SOC

I was drinking more until today's pem hit. My brain was on pause most of the day. Thanks for the reminder. I should feel more alive tmrw.

I just started hearing from my docs that I have bradycardia at times so I don't think I'm a good candidate for tachy meds. But I'll ask my dr.

It makes sense that the low blood volume problem will take time to correct.

Gotta rest. Tc .. x

 

[SOC]

Hi @SOC

I was drinking more until today's pem hit. My brain was on pause most of the day. Thanks for the reminder. I should feel more alive tmrw.

I just started hearing from my docs that I have bradycardia at times so I don't think I'm a good candidate for tachy meds. But I'll ask my dr.

It makes sense that the low blood volume problem will take time to correct.

Gotta rest. Tc .. x

I wonder if there is a med that modulates HR when you have some brady and some tachy. Worth asking, I suppose.

It's hard to keep up with the fluids when you have PEM, but I think it's even more important to stay well hydrated during PEM. I'm pretty sure the Florinef won't do much good if we're not also drinking enough water. I try to keep a large water bottle with me at all times so I don't have to get up as much when I have PEM. I make a point of topping it up when I have to get up anyway.

Since the BP and HR you listed in your earlier post still look like you might still be suffering from low blood volume (I'm looking at the dropping pulse pressure -- systolic-diastolic), you might want to try increasing your fluid intake significantly. Something to consider, at least.

Have you thought about whether you are dehydrating significantly overnight? A lot of us do. If you get up dehydrated in the morning, you can feel awful all day because it's hard to catch up. My cardio recommends drinking 500-750 mls of electrolyte drink right before bed, another 500-750 mls with the first Florinef dose before getting out of bed in the morning. Then stay in bed for 30 minutes to let it all take effect before you go about your day. (Okay, you'll probably have to get up to pee after all that fluid, but get right back into bed )

Hope you are feeling better tomorrow!

 

[xchocoholic]

Hi @SOC

I actually don't feel thirsty at all when I have pem. I eat because I know I need to but that's all. My muscles, inc my brain, feel like I've taken a muscle relaxer.

I spent yesterday in a pem daze. I'm a little better today tho. I think.

I took less florinef yesterday because I had a few bumps show up in various places. I have a weakened immune system so I'm trying to avoid flaring.

The bumps were mostly gone today so I took a tiny bite again early and then another tiny bite a few minutes ago.

I've noticed 3 times since starting this that I'm able to sit up easier. I've only felt well supine for several years now. I'm not getting too excited tho. I've had too many short lived positive responses to drugs or supplements over the last few years. I'm sitting more just to get used to it.

I'm out of food so ready or not I have to get out today. Lol.
What a life ... tc .. x

 

[SOC]

Hi @SOC

I actually don't feel thirsty at all when I have pem. I eat because I know I need to but that's all. My muscles, inc my brain, feel like I've taken a muscle relaxer.

I spent yesterday in a pem daze. I'm a little better today tho. I think.

I took less florinef yesterday because I had a few bumps show up in various places. I have a weakened immune system so I'm trying to avoid flaring.

The bumps were mostly gone today so I took a tiny bite again early and then another tiny bite a few minutes ago.

I've noticed 3 times since starting this that I'm able to sit up easier. I've only felt well supine for several years now. I'm not getting too excited tho. I've had too many short lived positive responses to drugs or supplements over the last few years. I'm sitting more just to get used to it.

I'm out of food so ready or not I have to get out today. Lol.
What a life ... tc .. x

It's not necessarily a good idea to judge your degree of dehydration by thirst. I was told that many low blood volume people don't have an appropriate thirst signal. I know that daughter and I don't. If we drank only when thirsty, we'd be FAR short of the amount of fluid we need.

We treat out extra fluids as one of our daily chores. We have alarms set throughout the day for drinking 500ml of fluids. It's a task, we do it. I've read that big slugs of water periodically work better than the same amount sipped throughout the day. I don't know if that's true, but it works for us. I would never drink enough (4 L for me, less for daughter) if I just drank water when I felt thirsty or when I remembered.

You might want to check with your doctor about changing your Florinef dosage day-to-day or even week-to-week. I seem to remember my cardio telling me that maintaining a constant dosage (once you've titrated up) is necessary for your body to adjust to the new condition.

Glad to hear you feel better sitting upright longer! That's a good sign. Hopefully if you maintain consistency in your dosage and fluid intake, you will continue to feel better.

 

[xchocoholic]

I "think" my cardiologist said to take Florinef as needed. And I would need to play with the dose. I hate brain fog.

I'd call and ask but chances are I'm going to have to figure out my dosage for myself. My body is overly sensitive to certain meds or supplements but not others.

So I found myself feeling healthy while sitting up for breakfast this morning. I took a tiny bit of Florinef when I first got out of bed. I may need to start taking this before getting up since my OI starts immediately once I'm upright.

That probably sounds weird to those who've never felt weak when sitting. It's interesting that my upper body muscles suddenly feel stronger too. Guess they really do need blood.

This doesn't last long tho. Being supine is still how I feel my best. I'm hoping I stop getting the blood rush feeling in my head when I lay down. It distorts my vision for a few minutes.

My brain just checked out. Gotta rest. X

Eta. I took a wee bit more around 12. Total = .025 appr. Hour later had 1/4 caffeine pill. I have to get some stuff done today. The maid's on vacay.

 

[xchocoholic]

I had a bad day today. No energy and OI was keeping me supine.

It finally dawned on me to guzzle some cranberry juice and I felt a little better. I'd backed off after I started feeling better last week.
I may need antibiotics afterall.

My heart has been acting up a bit for the last couple of months according to my drs. I'm skipping beats. And 2 have told me I have bradycardia. I was told it wasn't a problem tho.

Today at one point my hr according to my monitor was 36 but taking it again right after it said 58. I felt weak so I suspect that wasn't completely wrong. Other readings were in the 60's, 70's, 80's and once it was 99.

So I can't really tell what's going on via my hr and bp monitor anymore.
When my hr is really low, the pressure from the cuff makes my hand hurt and I feel faint. Fun fun ...

Oh. Still at .025 mg. Tc .. x

 

[xchocoholic]

Something's keeping me feeling worn out right now. My pem typically only lasts 3 days max. Could be mild uti ?

I didn't take this yesterday and felt stronger but not as good as I did pre florinef. I took it today and felt weak at times.

I'm going to skip this tmrw. If I feel better then I may stop it for now and look at natural options. The dose was so low I don't think stopping will be a problem.

Tc .. x

 

[xchocoholic]

I took this, .25 mg, again this morning and I'm enjoying sitting up right now. It's totally weird and cool to feel good sitting up.

I'll have to watch for the rash I got the last time. That went away and never came back within a few days of stopping this med. It definitely wasn't a heat rash since I've been sweating profusely over the last few weeks. Could be yeast or candida ? I wonder if there's something that works without suppressing the immune system.

Tc ... x

Eta. I felt so good that I started cleaning my dishes and stovetop. After about 15 minutes my POTS hit and I had to stop. Rats. I still got the dreaded head rush when I laid down too. Double rats.

 

[xchocoholic]

So I'm trying this again and I'm on day 5. For the first 2 days I took 1/2 a tab and for the last 3 days I took 3/4 of a tablet. This is a .1 mg tab. My script is for .1 mg tab daily.

So far so good. I had headaches for the first 2 days at .075 mg dose but just treated it with Tylenol. No headache today at .075.

I'm using a cream, ketoconazole, to prevent the rash I was getting so it's a very small issue this time. It drove me nuts the last time.

No dramatic improvements but I've been struggling with extra fatigue since last Wednesday. My Thanksgiving dinner nailed me.

I feel a little jittery / energized like I had too much caffeine even without taking caffeine.

I'm not couchbound with orthostatic intolerance but I'm still feeling crappy when I'm upright and lying down eliminates the crappy feeling. So still getting hypoperfusion probably.

My brain isn't working so lying down more and resting would probably be a good idea but I keep fighting the urge for some reason. I'm getting dizzy so I'm lying down for about 15 minutes then getting back up.

This med seems like a good fit for me because of my chronic low bp if I don't intentionally load up on salt. It was running 70?/50? when I was told I needed to salt load about 6 years ago. I'm still salt loading and drinking plenty of fluids.

Wish me luck. X