Florinef

[Guest guest]

April,

The following are just my experiences and observations of

other's exeriences. I'm not recommending that you go by any of this

without talking over the specifics of treatment protocol with a

physician.

As you pointed mentioned, it does sound a bit odd to say, " hope

she has orthostatic intolerance, " but the flip side is this aspect of

CFS can sometimes be effectively treated for some people with CFS

(PWCs).

There is often significant variability in how PWCs react to a

given treatment. This is certainly true with Florinef. Some are able

to tolerate it while others can't. As with so many medications being

tried for CFS the golden rule is to start VERY slowly -- often slower

than dosages being recommended. A very low initial dose may seem not

to be helping but starting slowly and gradually increasing

(titration) can sometime avoid adverse reactions.

Some patients can't tolerate even a quarter of a .1mg tablet of

Florinef a day while many of us have worked up to significantly

higher doses and been on it for years with no adverse reactions.

As with any medications, you want to watch carefully for even

subtle adverse reactions, but more on that later.

Typically doctors have recommended starting on a quarter of a

..1mg tablet/d for a week, a half tablet/d the next week, then three

quarters and finally a full tablet/d. From there some patients go as

high as 3 and 4 .1mg tablets/d.

A lot of PWCs find that the positive effects of Florinef wear

off part way through the day and also that if taken at night make it

harder to get to sleep. To avoid this many take the Florinef in the

morning and even split the dose up, taking half in the morning and

half in the afternoon.

Florinef alone won't tend to give the full benefit of taking it

with large amount of water and sodium. If there is presence of high

blood pressure this may vary. Florinef without water is a bit like

putting an octane booster in your car's gas tank but forgetting to

put in the gas. Doesn't work. Thermotabs, a buffered salt tablet is

easier on the stomach.

This is a medication that requires some experimentation and

careful fine-tuning of dose, water and sodium intake to find the best

treatment level for the individual.

And now the down side -- adverse reactions. But remember that

while these side effects do occur others have been helped

considerably by the treatment.

There are a lot of misconceptions about Florinef which is a

mineralcorticoid as opposed to other forms of steroids and it has

different effects. That said, some can't tolerate it and some have

nasty adverse effects from it. I'll list some briefly.

Some experience a racing heart and possibly related symptoms --

stuff to take very seriously. Others experience a gradual or rapid

increase of depression and this too should be taken very seriously.

With both these symptoms the effect can be quite nasty so pay close

attention to even subtle onset. When in doubt talk to the doctor. The

combination of Florinef, sodium and water causes fluid retention (the

idea behind the treatment). It's not unusual to gain 10-15 pounds

from the fluid retention, but some gain more. Others have experienced

more retention and some have had pain from it. This also has caused

some people to stop the treatment.

If Florinef can't be tolerated there are other treatments also

being used for orthostatic intolerance.

Hope this information helps.

[Guest guest]

In a message dated 10/31/99 3:18:01 PM Eastern Standard Time,

tyree.pines@... writes:

<< But is it even

necessary to continue increasing the dose as long as she's showing

improvement at her present level? >>

That may be her optimum dosage but by increasing it just a tiny bit, you may

see even better improvement. But don't overdo it. That's where patients get

worse.

gail

[Guest guest]

In a message dated 4/8/00 4:38:14 PM Eastern Daylight Time,

REVIVE2000@... writes:<< Sydney >> So are yousaying theadrenal

shutdown my pharmacist referred tois temporary? Youmade somegood points about

the weaning.I( nor my PCP know enoughabout protocol with Mit. or Atenolol.How

did you decide on those? I sure hope I can find more onthis! Katrina >>

Katrina,

Well, I cannot say for sure but I think it is most likely that your adrenal

shut down would be temporary and/or partial if it occurred at all. By weaning

slowly you should be able to go off the Florinef. The important thing is do

not stop Florinef cold turkey. Your adrenal gland most likely could not do

the whole job without some time to gear up again. In all people (not just us

sickies) the amount the adrenal glands puts out varies according to time of

day, temperature, stress, etc. So it is use to having to adjust.

The biggest problem I see for you is the fact that your NMH is not under

control so when you take the Florinef away you may feel worse if it was in

fact helping control it. That is why I was wondering if you had tried

atenolol or midodrine- something else you might use to alleviate symptoms of

NMH.

In 1995 I had been sick with the tentative diagnosis of CFS for 2 years when

I read the Hopkins research on NMH. As you may remember at the time NMH

was being proposed as a cause of CFS not just a symptom or related illness.

Since I had a life long history of mild orthostatic intolerance I jumped on

it. I went to my local university and found an electrophysiologist doing

research on syncope (fainting). His personal area of interest was looking at

beta blockers (like Atenolol) effect on NMH so that was the first drug I

used. About 3 months later we added Florinef. I was better on these drugs but

not normal. It partially helped the NMH but not other CFS symptoms. Over the

next 3 years I gradually got worse. Then we added Midodrine. It worked like a

miracle after I found the right dose. I am able to stand and sit almost like

a normal person. I wish I took it 6 years ago. It did not help other CFS

stuff but getting rid of the worst of NMH is a big relief.

I suggest if it possible that you find someone that specializes in treating

orthosatic intolerance. The person that I saw had no knowledge or special

interest in CFS. He was just open minded and a real nice guy. Unfortunately

in Feb. he moved out of state. Now my internal medicine doc is handling

my NMH. I feel okay about this because I had been on the same medications for

quite awhile, am doing well, and my doctor had communicated with the

electrophisiologist about it. If I start having problems again I will find

another specialist because I think they are much more knowledgeable.

Treatment of OI is a relatively new area and a lot of doctors are not aware

of different drugs that can be used.

I am a RN and have read on OI but am not an expert. So please not to consider

my suggestions as more than my opinion about what has worked for me.

Sydney

[Guest guest]

Hi all,

Has anyone used florinef and improved enough to make a difference? I am

taking 1/2 of a .1mg tab to start, and am taking Tri-salts, also. I

finally " gave in " to taking this particular drug because I was feeling

desperate for the semi-normal life I had last spring on IV ACE. My adrenal

stress index became normal after being on the ACE, but I couldn't deal with

the PMS, etc. side effects.

I put off taking florinef because Dr. Cheney explained to me (and I had

researched and come to the same conclusion) that it ultimately reduced

adrenal function, that it did not have the " dynamic " function of glandulars

( he was not speaking of ACE, as he had not used ACE).

Glandulars are restorative, florinef, etc. reduces function, in his opinion.

He also told me that over time, the florinef lost its effectiveness or

rather patients got diminishing results form same dose.

Since then, I have spoken to a couple of people who have been on florinef,

one for 6 months or so, who had improvement -cognitively and energetically,

then got off it because she had read that it can effect muscle mass. She

was underweight and concerned about it. She did not notice any untoward

effects after discontinuing it, but did lose the positive effects she had

experienced while on it. The other is a physician who says she has good

luck with it.

I'm in one of those fed up with this illness phases, and desperately seeking

relief. So, I am doing this experiement with florinef, to see if I am

missing anything and if it is worth the risk to me.

I think I know the answer to my dilemma, but would still like to hear from

others.

BTW, I have gone the licorice route, to no avail. My herbalist tells me it

is estrogenic and it would be good for me to avoid at this point, anyway.

I've also read up on Poesnecker - has anyone used his protocol?

Frustrated in Maine

M-

-----

[Guest guest]

Has anyone here tried Florinef, a kind of steroid that increases the blood

volume? If yes, then for how long? How long time does it take before it

starts working?

andreas

[Guest guest]

if anyone has any spare florinef i would be happy to buy some. i need to order

some, but want to start ASAP.

thanks

J