Florinef Info, Please!!

[ljoeb]

Ok.. Ok... I know there has been a lot posted on this site about florinef. But to be honest, my mind is in a "fog" again, and I really am not up to searching through the older posts... so, please forgive me!

Here's my question: I had been on a very minimal dose of florinef (.05mg) for the past 2 months or so and I was on cloud nine. I felt better than I have in almost 2 years. Welllll... what goes up must come down (or so they say) and after a few days working at a grand opening of a convenient store my brother-in-law owns (I was much more active and up and about over these 3 days then I have been in a long time), I crashed!! I got home and spent a week in bed for the most part, had numerous pre-syncopal spells upon standing (just like the pre-diagnosis days), severe brain fog, confusion, and fatique.

My doctor had told me that I could increase my florinef to .1mg, and I did so a week ago. But I have actually felt much worse. I can get out of bed for a couple of hours, and then I gotta lay down for a couple of hours (I never was fatiqued in the morning before... it usually started around noon or 1pm). I do have a few good hours in the late afternoon, and later in the evening. My head feels like its in a vice, my neck pain has started back (I did have cervical fusion and still have a herniated disc above the levels fused), I am in a constant fog. I honestly feel worse now than I ever have!!

Is this just a "build-up" period for my florinef increase? When I started it at .05mg I felt great within 24 hours. I see my doc next Wednesday.

Thanks for your thoughts! Joe

[taylortotmom]

Well, you state you are fatigued in the morning now which leads me to think it is likely a dehydration issue (chances are you don't stay up and drink fluids all night). For me personally, I must take my Florinef first thing in the morning for this very reason. Another option might be taking half of your Florinef first thing in the morning and then the other half later in the day tp try and control the peaks and valleys you are having. Just be consistent when you take it.

Also, a major increase in fluids (especially something with high sodium content such as Gatorade) may be required. Generally, the worse you feel, the more you need to drink.

These are things to discuss with your doctor when you go back. Based on what you wrote, in my opinion it sounds like the store opening kicked you in the behind and has cause a relapse of symptoms. Unfortunately our relapses can be brutal- good luck-

Carmen

[ljoeb]

Thanks Carmen... I was just considering taking half my med twice a day instead of all at once. I'll see how that works.

I already am consuming massive amounts of fluid and sodium daily... It just must be one of those "weird periods" that I hope will soon pass.

[Miriam Poorman-Knox]

I had a hard time when I first started florinef. When they wanted to increase from 1 to 2 no way. So I alternated days so it was every other day for increased florinef. I eventually lowered my dose to .1.. A good point though is that I used to take my meds and get up about 45-60 min later after they "kicked in". It worked. Also since your activity has gone back to "normal", you probably require less. Perhaps this is a med for you that you need to increase when you will be active. Good luck...Miriam

[JaneEyre9]

I personally feel better on a very low dose of Florinef. When I was on a higher dose, it caused side effects that went away on the lower dose. I've tried going off of it altogether, but I still need a small amount of it all the time. I agree that the store opening probably threw your body out of balance, and it may take some time to get back to baseline again. Hope you feel better soon.

Kristen

[flop]

It would be unusual for the increased florinef to make you feel the way you describe at the moment. It also takes about 6 weeks to get the full effect of starting or increasing florinef - although you had a very rapid response the first time that may have been due to a combination of effects from the medication and also the relief of starting the treatment, if you expect a tablet to make you feel good it often will (this effect is seen in medication trials where consistently patients report improvement in their symptoms even if they have been given a placebo sugar pill).

I suspect that as others have said it was the rush of extra stress and activity that has triggered a flare up of your symptoms. Increasing your florinef as per your doctors suggestion was probably the sensible thing to do but you will have to wait several weeks to see the full benefit of the dose change. In the mean time it sounds like rest, fluids and salt are your best tactics.

Have you ever had a 24 hour urine collection to measure your 24hr urinary sodium levels? It can be a useful way of knowing if you are taking enough sodium or not. There was a paper published a few years ago by Prof Hainsworth that said that if 24 hr urinary sodium was less than 170 mmol then patients seemed to benefit from increased sodium intake.

Hope you are feeling a bit better soon,

Flop

[ljoeb]

thanks flop!! Yeah, I kinda exagerated on when I started feeling better on the initial florinef... my doctor did say it would take several weeks for it to take full effect. I also increased substantially my sodium along with the florinef. So it really took a few weeks before I started feeling better... but boy did I feel better for a good month or so.

I haven't had the 24 hour urine test yet, but have seen it talked about and was going to ask my doc about that. I did have a restest of my blood volume right at 6 weeks after I stared florinef and it came back in the normal range. It was quite low for the first test.

I am seeing the "progression" of this disorder. Last summer was the first "heat" with my condition, and I did have to be careful being outside and noticed that my condition was a "little" worse during the summer. That was right in the middle of all my initial testing, and I just counted it off as being anxious of the "unknown" at the time. I was thinking of my condition worsening this summer and realized it has been directily related to the outside temp being above 90 degrees for the last 2 1/2 weeks. Even though I don't go outside much, I am still feeling the effects, and it is much worse so far this summer than last.

Thanks for everyone's insight and help.. it is quite comforting to know there are "others" out there.

[juliegee]

Hi Joe,

I hate that you've had a regression! But burning the candle at both ends will do that for us dysautonomiacs- no matter how great our med regimen is. I have a few thoughts. Despite Flop's observations, both my son and I had really good results with florinef very quickly. We both had increased energy and an increased gastric capacity right away (we were struggling to put weight on.) I'm sure as Flop says that things only improved as we were on it longer and levels built up.

Are you also increasing your salt intake? Florinef only works if you also increase salt and fluid intake simulatneously. We use Thermotab tablets. They are a combination of salt/potassium, often found behing the pharmacy counter, although they are OTC.. At his worst, Mack took 6 a day. With .05mg, you should be taking a couple a day, at .1mg, you could take one at every meal and drink, drink, drink. It takes all 3 steps for this regimen to be effective.

Most importantly, are you checking your BP? .1mg certainly has the potential to raise your BP. Be sure you are checking it periodocally.

If raising your florinef level isn't helping, maybe it's not the best therapy for you right now. My son titrated up from .025mg to .2mg, goiing a 1/4 tablet a week. Each small incremental change made him feel leaps and bounds better. We were warned to be on the lookout for a nasty headache- a sign his dose was too high. Never happened. .2 worked beautifully for years, until his BP started creeping up. He's down to .05 now and still getting a great effect.

Maybe stay at the .05 level (with adequate salt and fluid) and consider adding a different medication. Lexapro (of all things) gives Mack the needed energy boost to get through the day somewhat normally.

Lastly, we all crash and have to ride it out. I am confident that you will soon be back to your previious level good functioning. Give it a week or so and baby yourself and best you can.

I'm sending lots of good energy your way.

Julie

[Miriam Poorman-Knox]

. Dude you are in Texas..!!!!!! Worst year of my pots. I utilize AC AC and AC. Also cooling vest, hats, kerchiefs and iced drinks. For me heat is the worst. The thing is now that you know whatto look for you will be more aware. Miriam

[flop]

Joe,

I didn't realise you were also dealing with the Texas heat! I always feel dreadful when it is too hot (and for me the UK too hot is much lower than the temperatures you must be dealing with). When it is hot it is even more important to drink loads of water and replace the salt that you will be loosing through sweating. Seek out places with decent air conditioning systems to keep yourself cool. When I am feeling particularly bad I often find that having a fan blow directly onto my face is very beneficial (even if I don't actually feel too hot).

Flop

PS - some of the effects of florinef do start immediately such as increased appetite and difficulty sleeping for some if doses taken during the day rather than first thing in the morning, the 6 weeks to work is to get the full benefit of the blood volume expansion.

[ljoeb]

Thanks flop... I am staying inside and getting out very little. I think it has alot to do with just the "overall" temp and humidity outside, even though I stay cool inside the house. The other big problem for me is that I don't sweat much at all, and so the heat and humidity can wreak havoc on me in a very short period of time. But I do consume volumes of water, gatorade, and weakened tea... about 150 ounces or more a day.

[starry16]

Flop, can you explain the 170 mmol number? Is that the bottom of a normal range, or is it more of an ideal number?

I was told salt supplementation didn't matter if on florinef, and I gave up on florinef b/c it didn't seem to be working. Now I'm wondering if I should try again with salt!

[flop]

Hi,

the 170 mmol/24 hr is in the middle of the normal range. I think that the bottom of the normal range for sodium excretion is something like 110mmol/24 hrs. The 170 is the cut-off quoted by Prof Hainsworth in his research article. His team found that POTS patients with urinary sodium less than 170mmol/24 hrs were the patients that benefited most from sodium supplementation.

Florinef works by increasing our blood volume (more blood circulating = higher BP and less tachycardia, in theory at least). The actual way that florinef works is in the kidneys. When the blood passes through the kidneys a lot of water, salt, sugar and waste products are filtered out of the blood. The kidneys then cleverly re-absorb what they need and leave any waste or excess to pass out in the urine. Florinef affects the re-absorption, it causes more sodium than normal to be re-absorbed, through osmosis water will follow the sodium so more water gets pulled back into the bloodstream. If your sodium levels are not high in the urine there won't be much sodium for the florinef to pull back so not much water will follow either.

For florinef to work you need a good balance of enough water and salt. Measuring the 24 hr urine sodium is a good way of knowing if you are taking enough sodium or not - levels below 170 mmol/24 hr suggest that you need to eat more salt or take sodium supplements. Measuring sodium levels in the blood is not helpful for this balancing act as the kidneys work hard to regulate the blood sodium levels and keep them normal so unless you are very dehydrated your blood sodium level will not rise above normal.

I hope that makes sense, feel free to ask for more clarification as brain-fog usually means that I say things in a long-winded and complicated way!

Flop

[starry16]

Thanks Flop!! That is really helpful information. I love how I spent 6 weeks on florinef and didn't supplement with salt because my doctor categorically told me it was unnecessary! What a waste!!

I just looked back at my blood work and there are two measures listed under 24 hr urine sodium. It's very confusing, but I'm well under the 170 either way. It says:

sodium, urine: 34, reference range 28-272

sodium, 24 hour urine: 94, reference range 52-380

I guess the second one is the relevant one.

Thanks again for the info. If you by chance had a link or knew where to find that article with the sodium numbers, I'd really appreciate that too.