Florinef: your review? And, isn't it a steroid = not good for immune?

[Sasha]

One of the things my CFS Dr. recommends (I am trying to get back to my walking routine-slowly). 20-30 min before I am going to do any exercise even minor is to lie flat-no pillow and put my legs up high. This helps more blood to my heart and brain. I do this several times a day. Sometimes he said to take Magnesium also. It does seems to help Neuro wise and I have more energy to exercise. -even a small amount.

That's very interesting - thanks for passing that on. I'm a bit indisciplined in my lying down. I have to do so much of it (15 mins each hour) that I get bored and like to watch TV sometimes while I'm doing it so have my head tilted up a bit. Maybe I'd have to lie down less if I used no pillow.

How high do you put your legs up?

 

[Sing]

End of March, 2012, the FDA was going to approve Droxidopa for Parkinsons, maybe a few other illnesses, but with off label potential for ME/CFS. Then something held it up again. Last I heard was sometime this summer it could get approved. Just checked it out. See this link for the update:
http://www.drugs.com/nda/northera_120703.html

The name of the drug, actually, will be Northera, which is really Droxidopa, and the company is Chelsea Therapeutics. So the article is a great example of bureaucratese, the negotiations back and forth about trying to get a drug approved, but it looks hopeful.

 

[SanDiego#1]

That's very interesting - thanks for passing that on. I'm a bit indisciplined in my lying down. I have to do so much of it (15 mins each hour) that I get bored and like to watch TV sometimes while I'm doing it so have my head tilted up a bit. Maybe I'd have to lie down less if I used no pillow.

How high do you put your legs up?

I put my legs as high as I can comfortably get them. Usually 3-4 pillows or more. I like you cannot lie down and have to do what I have to do when I am up. However, Dr. calls this the Dash and Crash syndrome. I have learned I have to do it!!!!
It really does help!!

 

[SanDiego#1]

I put my legs as high as I can comfortably get them. Usually 3-4 pillows or more. I like you cannot lie down and have to do what I have to do when I am up. However, Dr. calls this the Dash and Crash syndrome. I have learned I have to do it!!!!
It really does help!!

If I really want to exercise-I even will put feet on headboard. The trick is to do it long enough to change the bloodflow. At least 20 min. 30 is better..NO PILLOW.

 

[HTree]

SanDiego#1@Sasha
The legs up, head and back completely flat is a great old yoga position. I do this just lying on a (carpeted) ground and putting my legs straight up against the wall. I think it is good for other things too (relaxation, etc--thus the yogi's do it ) Just make sure you scooch so that your bottom is all the way the wall, with legs straight up. Basically you are in an L shape against the wall. I find it comfortable. Yes with No pillow

 

[taniaaust1]

Who is doing your Cortisol testing? I have found they all do testing a different way. What is the most efficient test? I am on Electrolyte
Sol and does help. Just feel like I need more.

My doctors were only willing to do morning cortisol blood tests and 24hr urine testing. My morning cortisol is fine and mid range then.but my 24hr urine cortisol level was abnormally low (out of normal range).. so I must be extremely low at other times of the day other then the morning.

So that does show Ive had some kind of issue going on.

 

[Sasha]

Thanks, Htree and SanDiego - I'm going to try that!

 

[Sing]

My doctors were only willing to do morning cortisol blood tests and 24hr urine testing. My morning cortisol is fine and mid range then.but my 24hr urine cortisol level was abnormally low (out of normal range).. so I must be extremely low at other times of the day other then the morning.

So that does show Ive had some kind of issue going on.

Of course it does! I would think. Now, if your doctor is willing to let you have a trial run of low-dose cortisol, even 5 mg, once or twice a day (big glass of water or food with it)--not first thing in the am when your cortisol is good but when you start to droop, then around five or so hours later--you would see if it helps you to feel more normal. Cortisol wears off in six hours and is supposed to drop down in the evening and before bed, so I wouldn't ever take it later in the day. I would ask for a trail run--or possibly more testing--though the ACTH stimulation test they like to run is useless except to discover if you have a diseased or missing adrenal gland all together. With ME/CFS, the problem is usually different, a low-functioning HPA axis, as has been documented in research. This issue does not originate with the adrenal gland itself--there may be nothing at all wrong with it-- but rather with the chain of command from the top. The adrenal gland will not issue its hormones without orders from its chain of command. If medical science could fix the problem at the top of the chain of command where it originates, that would be great, but they don't know how. So, in the meantime, what can be done is to add in the lacking hormone in a timely manner.

I apologize for getting involved in a prescribing manner, but this is a huge gap in medical practice, in my view--the failure to supplement a lack of cortisol. They would not think twice about supplementing a lack of thryoid hormone or insulin....

 

[SanDiego#1]

SanDiego#1Sasha
The legs up, head and back completely flat is a great old yoga position. I do this just lying on a (carpeted) ground and putting my legs straight up against the wall. I think it is good for other things too (relaxation, etc--thus the yogi's do it ) Just make sure you scooch so that your bottom is all the way the wall, with legs straight up. Basically you are in an L shape against the wall. I find it comfortable. Yes with No pillow

I FIND IT HELPS EVERYTHING-YOU GO GIRL!!!!!!

 

[HTree]

Sing , All
Re: cortisol, I don't know too much about the neuro-endocrine system (i haev a BA in Bio, but rather a while ago...i've learned a great deal about immunology in recent years! but realizing i need to utilize some energy--ha!-- for a little endocrine study).
In any case, i digress
-- cortisol supplementation, is that not done often? Florinef mimics adolsterone, correct? Why not use a synthetic cortisol, the other adrenal gland-output? Hmm, must be a reason..?
My cortisol is quite low in the AM, then normal rest of day--but my sleep cycle is rather inverted/ However I'm not sure if that's cause or effect of the low AM cortisol, but clearly that's a correlation. e.g am I nonfunctional in the AM because of low cortisol, or because of how much sleep schedule has shifted (gradually and rather dramatically to ev) over the years? Hmm.
I'll ask the ME/CFS folk, but perhaps I should see an endocrinologist again...been years since I have...

 

[Sing]

HTree, I don't know about whether or not your cortisol production is causing a sleep problem, or not. I do know that in general we all have sleep problems of one kind or other, and that many of us have a weak HPA axis too--

The book, "Safe Uses of Cortisol" by Dr. William Mck. Jeffries goes through the history of cortisol discovery and early use, etc. and how this resulted in its bad rap. In the 1940s, maybe 50s too, it was prescribed in massive overdoses--the kind still used only very short term in the hospital to pull patients out of life-threatening emergencies (asthma attacks, surgeries, major accidents, etc.) But in the early days of ignorance, it was used at these very high doses long term, as for rhematoid arthritis. And after awhile these people had some major damage from this excessive cortisol. So that was the beginning of the bad rap.

Then the patent ran out and cortisol is extremely cheap to make as a generic. Researchers did finally work out correct dosing and learn what a body normally makes, but by this time there was already the bad rap, and no money in studying or prescribing cortisol, so there have only been few and small studies since about low-dose cortisol supplementation for various conditions--ours, being a prime example, where many of us--not all-- could use it and benefit. The long list of dire risks and side effects on the pharmacy sheet pertains to this higher dosing, overdosing--not to what happens when you are supplementing a deficit.

There are earlier threads going into this subject, so it can be looked further into here, if you want. A lot of other members weighed in with their experience. This is one area--one of many--where we can benefit more from each other's knowledge than the standard medical view out there. That is what I think.

 

[SanDiego#1]

HTree, I don't know about whether or not your cortisol production is causing a sleep problem, or not. I do know that in general we all have sleep problems of one kind or other, and that many of us have a weak HPA axis too--

The book, "Safe Uses of Cortisol" by Dr. William Mck. Jeffries goes through the history of cortisol discovery and early use, etc. and how this resulted in its bad rap. In the 1940s, maybe 50s too, it was prescribed in massive overdoses--the kind still used only very short term in the hospital to pull patients out of life-threatening emergencies (asthma attacks, surgeries, major accidents, etc.) But in the early days of ignorance, it was used at these very high doses long term, as for rhematoid arthritis. And after awhile these people had some major damage from this excessive cortisol. So that was the beginning of the bad rap.

Then the patent ran out and cortisol is extremely cheap to make as a generic. Researchers did finally work out correct dosing and learn what a body normally makes, but by this time there was already the bad rap, and no money in studying or prescribing cortisol, so there have only been few and small studies since about low-dose cortisol supplementation for various conditions--ours, being a prime example, where many of us--not all-- could use it and benefit. The long list of dire risks and side effects on the pharmacy sheet pertains to this higher dosing, overdosing--not to what happens when you are supplementing a deficit.

There are earlier threads going into this subject, so it can be looked further into here, if you want. A lot of other members weighed in with their experience. This is one area--one of many--where we can benefit more from each other's knowledge than the standard medical view out there. That is what I think.

My one suggestion is to be very careful with Florinef. I know some people swear by it, however overtime there are serious consequences for some people. They cannot come come off of it easily and also have a problem even on small doses. Legs start to swell with some and BP goes up. I have to take things I can come off of easily if I have problems.

 

[taniaaust1]

Of course it does! I would think. Now, if your doctor is willing to let you have a trial run of low-dose cortisol, even 5 mg, once or twice a day (big glass of water or food with it)--not first thing in the am when your cortisol is good but when you start to droop, then around five or so hours later--you would see if it helps you to feel more normal. Cortisol wears off in six hours and is supposed to drop down in the evening and before bed, so I wouldn't ever take it later in the day. I would ask for a trail run--or possibly more testing--though the ACTH stimulation test they like to run is useless except to discover if you have a diseased or missing adrenal gland all together.

I apologize for getting involved in a prescribing manner, but this is a huge gap in medical practice, in my view--the failure to supplement a lack of cortisol. They would not think twice about supplementing a lack of thryoid hormone or insulin....

Ive actually have trialed hydrocortisone to try to raise my cortisol at a low dose 10-15mg per day (cause I used my abnormal test results to push a doctor into letting me trial it). If I remember correctly I think I may of taken some in the morning (when my levels do test fine) and a bit at night .. umm it may of been taken when I was going to bed. (maybe I should of taken it all at another time, If it only lasts for a short time? maybe that is why I didnt notice it helping? maybe the morning dose was worn off later in the day?).

Unfortunately having this morning and night (jjust before bed?) at that low dose at those two times .. I found that it didnt help me in any way (or maybe it just wasnt enough in my case?). I never got sent to a specialist about my abnormal results or had any more advanced testing done. Doctor like just gave up on my abnormal level (it was never retested either while I was on the low dose hydrocortisone to see if it raised to normal 24 hr level either).

Im seeing a new doctor in a couple of months (he was booked out for 5mths), it will be interesting what he says about things with me and what tests he does. (The new doctor is one with a special interest in hormones and who fixes people who have hormone issues who other doctors havent been able to help)

 

[Sing]

That is a shame, taniaaust1. I have come to lots of dead ends too with doctors, even nice ones who try to be helpful. I hope you can get your hormones better tested, or re-tested, by this new doctor.

The only other possibility re hydrocortisone from my own experience was that the generic form of it seems very poor quality. It seemed both weaker and maybe slowly released, time=released, so that I didn't get it when I needed it but dribbled out much later on when I didn't. This was a problem in the evening and night when it is supposed to be very low, for rest and sleep. The brand name from Pfizer has always worked well for me. (I don't know about these brand names or generics in Australia.)

A doctor once told me that generics are held to a lower standard, only 80% potency, but then they aren't tested or well regulated after they are put out either, so you may be getting little of the viable hormone. It seems to me that if you had taken a good quality version of hydrocortisone, you would definitely have noticed its effects. I notice in 15 mins. Given that a full replacement dose is these days considered to be 30 or 40 mg, 10 to 15 should definitely be noticeable.

 

[BEG]

Hi Sing,
Sorry I'm unable at this time to read the entire thread, so I apologize for any repeats. After my tilt table test, I was offered florinef or cortef but not both because the doc said that both are steroids.

Florinef never did a thing for POTS. I tried it 2 times with the same result -- none.

Do you take it?

 

[Ema]

Hi Sing,
After my tilt table test, I was offered florinef or cortef but not both because the doc said that both are steroids.

Florinef never did a thing for POTS. I tried it 2 times with the same result -- none.

Florinef and hydrocortisone are both steroids but they are vastly different in action on the body. HC has mostly glucocorticoid effects whereas Florinef is designed to replace the hormone aldosterone. Aldosterone is responsible for fluid balance in the body and regulates electrolytes. Many people take these two together to replace what the adrenals are no longer producing.

I would stay FAR FAR away from any doctor that doesn't understand this basic difference between these drugs because they almost certainly won't understand how to dose them appropriately either.

 

[xchocoholic]

Great info. Thanks. X

 

[charlie1]

This is an old post but hoping some of you have bookmarked it to be followed.
@Sing @Ema

I had a very gradual decline over the years leading into a sudden and severe downward spiral in spring 2012 of almost all CFS symptoms. My doctor(GP) was of no help to me and figured I had a mental disorder such as 'conversion'. I then went to a functional medicine doctor who put me on adrenal extract, Armour T4, feritin, DHEA (10 mg.), magnesium and so many more supplements that I can't remember. Six weeks later I was no better and was collapsing from weakness when walking only a few feet, and lacked energy to the point that I needed to be in a wheelchair, couldn't feed myself nor shower/wash my hair without the help of my husband. The functional medicine doctor saw my deterioration and prescribed 20 mg of Cortef (hydrocortisone) but still no change.

Nothing seemed to help my symptoms during ' that summer from Hell '. That fall I I was hospitalized after repeated spells of passing out and that's when my GP learned that I had been taking Cortef. She was angry b/c "I was taking a steroid that was going to cause my adrenals to shut down " blah blah blah. She sent me to an endocrinologist to wean me off the Cortef (ridiculous as I was only on 20 mg/day for <2mths.) The endo tested me for adrenal insufficiency (Addison's) through a STIM test and also checked aldosterone and catecholamine levels and T4. Everything normal except very low (or absent) DHEA and very low blood pressure (which I had for years before all this.).

I was put me on Florinef (varying dosages over the following months, salt tablets and compression socks and clothing but nothing really helped much. If it did, it never lasted (familiar story with many of us). For many months I titrated the florinef dosage but nothing helped raise the blood pressure into the normal range. Severe headaches and migraines were always with me, even after discontinuing the Florinef. Midodrine caused my pulse to fall into low 30's and stayed that way for 8 hours (2 separate times) so it's not an option for me.

In January 2013 I was DX with POTS through TTT and put on Mestinon long acting (240 mg). EUREKA!! I was able to walk without weakness and talk without brain fog for the first time in a year! But within 2 months I was deteriorating again.

Fast forward to today....50 mg zoloft, magnesiusm, Vit C , compression socks, lots of water and few other herbal supplements are all I'm on. I am not near as bad as the 2012 Summer from Hell but still I have bad mornings, every day with my evenings being my best time of day. ( is that a clue as to what treatment could work for me?) If I do get a few good days in a row, they're always followed with a crash lasting 3-5 days or worse. To me this sounds so much like an adrenal issue (HPA axis?) but my conventional GP and endocrinologist say they recognize I'm not healthy but can't help. And don't want to give DHEA to me.

Question - Do you think I should go back to the functional medicine dr and request Cortef and DHEA again (my DHEA was 'undetectable' for years prior to the 2012 symptom onset.) Perhaps when I was in that very acute stage of the illness, nothing was going to help but might now? Or do you think it was going to work for me, I would have seen results the first time when I was extremely ill? Any advice?

Droxidopa is now approved in the States...anybody try it yet? I'm in Canada and it would be next to impossible to get my doctors to consider going through the hoops to prescribe it for me. I've never seen a CFS specialist nor any doctors for viral testing. I'd have to go to the States.... $$

long post....sorry. I'm just trying to be proactive here and not lose hope that I'll ever get out of this 'plateau' . Although the IOM shows much promise for our future and there is now a biomarker for CFS, I am very guarded that their is something that can be done for my PEM and low blood pressure. Thanks for listening.
Charlie

 

[Sing]

@charlie1 What an interesting post! To me your story is indicative of the conservatism of this illness, how difficult it is to really change. Dr. Gordon Broderick is trying to work out how to change this homeostasis, by sequential nudges to certain aspects of the immune system picture. This seems like an intelligent approach to me, though I would not limit what needs adjusting only to the immune system, but would add in the endocrine and neurological systems too.

I have tried Droxidopa, briefly, as I didn't like it. Yes it moved my blood pressure up, but I still have no internal regulation, so it was still up and down. Standing still my bp could still go down to 60 over 40 in 3-5 minutes. But then the Droxidopa lingered in my body longer than it was supposed to, and made bp lying down too high, such as 180 over something. It also contributed a headache and sometimes tinnitus. As headaches are the one problem I haven't had--and I mean the only one--I did not want my nervous system to learn how to put this one together! So, what with the fabulous price of Droxidopa, even with partial insurance coverage, I just backed away.

I take Florinef and thyroid hormones, as well as Midodrine.

Cortef 5 mg twice a day has been a big help, though it seems to do less for me than before. I barely notice an improvement from it now, after 15 years, though I would notice it if I weren't using it. Maybe I could use the dose raised. But I feel too old and tired to wrangle with another endocrinologist now. They don't test the HPA axis the right way but only seem to test the health of the adrenal gland itself, which is usually irrelevant in this illness. You can have a perfect adrenal gland but it the HPA axis signalling doesn't work right, you might as well barely have an adrenal gland.

I don't feel like fighting with any more doctors, none of whom in this region have any expertise with ME/CFS. The best I can do is find a doctor who is respectful and willing to cooperate somewhat. But, the weeklong preparations for appointments with new doctors, and superman-level feats of communication, are beyond my level of ability, energy, and maybe most of all, hope at this point. Instead, I am just going along with the combination of pills I slowly worked out over the years. They help somewhat but basically I am sliding downhill (to my grave, not to be melodramatic.) Aging--moving into the upper 60's--and ME/CFS/SEID make a rough combination!

 

[Sing]

Continued from above:

I haven't been to a "functional medicine" doc, but saw a couple of Naturopaths and have gotten plenty of opinions from other alternative practitioners, friends, and acquaintances. Isn't it marvelous how they all claim to be able to cure ME/CFS, or greatly improve it? There isn't one I have ever met or heard of who will admit that he or she knows nothing about it and can't help--which is normally the truth. Add to that the everything-is-Lyme, or everything-is-toxins, and there we have more years of treatments, efforts, hope and money--expended in a lot of cases, such as mine, for no good results.

So, I am sitting by the sidelines, watching the research results come in, learning about what the "expert doctors" are doing, until I hear of some approach and treatment which finally seems to be a breakthrough.

I know I am discouraged, and don't let me discourage you, Charlie, because you may well find something which gives you a boost of improvement. I hope so