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

[stefny]

Hmm, thanks Tania. Turns out my doc wants me to try the saline w/out the florinef first anyway. I WAS wondering about how long the saline would last. I had my first saline iv Mon. p.m. and felt better Tues. though... my pots was so bad last night (Tues. p.m.) that I had to sleep with the compression socks on. I need to find out how often to have the saline iv's I guess. Any ideas? I can't see driving 45 min.'s to the doc. for a saline drip every few days for the rest of my life. Though... I would do it if it as long as I could if it made me better.
I heard recently from someone who said getting her cortisol levels straightened out the POTS/OI. She followed "Adrenal Fatigue" by James Wilson. I'm going to try it. Again. What the heck. The nurse where I get iv's/hbot said her son had the OI issues when he was really thin and gaining weight helped. I'm thin but it's not an idea I'd like to pursue.

 

[taniaaust1]

stenfy..for some the saline iv only lasts 24 hrs. Some can be peeing all the extra fluid straight back out. (I wonder if Florinef would in such cases help to make it last longer? one would think that in such case it would help keep the extra fluid there some).

Ive never been able to get a saline infusion thou have been trying to get one for years.. so cant tell you much more on these. I'll look later if I can find the link for the info Ive collected on these (eg on the different delivery methods of the saline IVs...one can recieve these in several different ways eg things can be done so so one can use them oneself at home).

Others just may have saline IV when something special is on.. so they can go out and enjoy at those times.

for myself.. taking hydrocortisone didnt fix the POTS/OI thou my level of cortisol tested abnormally low.

 

[Sing]

I tried Florinef in some ascending dosage during one summer. It helped a little bit with the NMH but as it got to a somewhat more effective dose for the NMH, it also caused puffy legs and depression, so I stopped it. It was too hot to be wearing tight support garments all the time with it, too. So, I try to cope with Midodrine only and lying or sitting down as needed, but you know how that works. The needs of life do not always fit with our needs with NMH!

I am looking forward to the approval by the FDA of Droxidopa by Northera (I hope that is the right name and drug company--going on a leaky memory) which has been used successfuly for some years in Europe and Japan for NMH. It works at the neurological level and is primarily targeted on helping Parkinsons patients. I want help with the neurally mediated part of this hypotension rather than just filling up my legs with fluid and trying to mechanically force it upwards by means of bands-of-steel stockings. Sorry for the drama, but I wish we could get treatments which focus much more closely on the source of the problem rather than its downstream effects.

 

[HTree]

Hi All,
Ema SOC taniaaust1Sing
another quick question:
i've started at 1/4 of the .1 tablet. How long shall i stay on that to notice it's effect?
(then i'll move up to 1/2, maybe full .1 tablet)-- But wondering how long i should stay at each level?-- and at what dosing you First noticed improvement in ability to sit up longer / walk
(OR alternatively when the negative side affects showed up)?

Thank you!
Peace,
Htree

 

[taniaaust1]

Htree.. make sure you are having plenty of salt too or otherwise it wont help.

My specialist had me on 1/4 of a tablet for 2 weeks.. before increasing to half a pill. You basically should just be on it for enough time to see if you are going to be getting any postive or negative effects on that dose, then you should be able to raise it if it was okay.

Also doctor should be monitoring things re blood tests to make sure it isnt causing issues. I was blood tested to check to see if it was causing any issues when I was on half a pill, after 2-3 weeks.
(I myself then happily stayed on half a pill for a while as I knew it was definately helping.. things all will depend on what you and your doctor wish to do.. my specialist was hoping that half a pill would be enough.. I thou decided I wanted a dose increase after I found I was still getting POTS collapses.. it was helping but it just wasnt enough).

Specialist then wanted another blood test done to check it all, after I was on a one pill dose for a couple of weeks. (Due to transport issues I havent had had that blood test yet.. but will be having it next week to see if he thinks Im going to be okay at that dose or not).

Im trying to remember back. I think at the quarter of a pill.. I wasnt sure if I was feeling benefits of it or not (thou I also had support stockings.. my specialist got me to buy and trial support stockings first..then Florinef was added to those) ..but the half pill (in my case) was clear benefit to me... I could tell that within days of starting that dose.

I "dont think" (im still not completely sure) that 1 whole pill is having any negative side effects thou I have had more headaches since increasing to this dose...but Im still not sure if its cause of the pill increase. I think I need to trial this dose for a couple more weeks to know. I still as yet cant see any benefit for me with 1 pill over what the half a pill did. A bit more trial time will tell. I also have had a couple of odd incidents since the dose increase of dizziness when Im laying down for no reason I can think of (dont know if dose change related)

One thing I have noticed this week thou I dont seem to be having much symptom shift, is that my BP and possibly my heart rate seems to be more stable.... it was still being wildly unstable a lot of the time on half a pill thou that helped with symptoms. When taking my heart rate.. Im really surprised that my heart rate now seems mostly steady when Im getting up now etc Something I hadnt had happening for years.

 

[Hope123]

Didn't read the whole read but florinef, although structurally similar to corticosteroids in some ways, doesn't have the same degree of immunosuppression.

 

[Sing]

If your body doesn't have enough cortisol circulating, then getting more is helpful in all kinds of ways, including with the immune system. It is only when your body is making or receiving too much cortisol that it is immunosuppressive. As with all the hormones, they are extremely valuable and necessary in the right amounts at the right times, but harmful in their effects if you have too much. The warnings for hydrocortisone or cortisol came from the days when the doctors did not understand the right amount, the physiological dose, to give, and patients were being highly overdosed. You can imagine how getting too much thyroid or insulin or any other hormone might be. This is the same idea. Cortisol is a master hormone and necessary for life and h ealth. You just have to have the right amount on board.

As for Florinef, this replaces a much more specific hormone which enables the body to retain sodium, and hence more fluid.

 

[Tito]

Some viruses such as xmrv/mlv have cortisol receptors. So the higher the cortisol, the more they'll thrive. I think for some people low cortisol is an adaptative process to the illness that should not be corrected.

 

[Ema]

Some viruses such as xmrv/mlv have cortisol receptors. So the higher the cortisol, the more they'll thrive. I think for some people low cortisol is an adaptative process to the illness that should not be corrected.

There is some truth in the idea that low cortisol is an adaptive measure. Certainly low cortisol and low thyroid help to turn down the metabolism in order to try to starve any pathogens from surviving and thriving.

The problem is when these hormones get TOO low...I can speak from personal experience that multiple attacks of low cortisol became life threatening for me until I was diagnosed with adrenal insufficiency and placed on an appropriate physiological dose of cortisol and Florinef.

The body needs a proper amount of steroid hormones to mount an immune response. If having this amount of steroid hormone in the body automatically prompted pathogens to develop, everyone with "normal" cortisol would be coming down with illnesses like this left and right and that is not the case.

Too much is as bad as too little in the case of hormones and it is a delicate balancing act for sure. Only you and your (well-educated in hormones and immunology) doctor can make a decision as to when replacement is right. Most LLMD's accept that hormone replacement with cortisol and supporting the endocrine system as a whole is a vital part of treating infections such as Lyme.

 

[Tito]

The body needs a proper amount of steroid hormones to mount an immune response. If having this amount of steroid hormone in the body automatically prompted pathogens to develop, everyone with "normal" cortisol would be coming down with illnesses like this left and right and that is not the case.

yes and no. Normal individuals do not carry all these active pathogens. My view is that a normal body would try to get rid of them as soon as they arrive, well before an adaptative response develops.
But you are right. It requires some fine tuning between an active immune system and a virus trying to take advantage of the situation. I think it has to do with the quality of the immune response once properly fed by the hormones: if the reaction is speedy and strong enough, it can overcome the strengthening virus, if the immune response is poor (due to genetic faults, etc.) then it won't and the person will become worse.

 

[Ema]

Normal individuals do not carry all these active pathogens. My view is that a normal body would try to get rid of them as soon as they arrive, well before an adaptative response develops.

I actually think that most healthy people do carry a variety of bacteria and viruses waiting to activate. The immune system keeps them in check for the most part and optimal hormone levels are a big part of that response.

 

[Tito]

You're right that many bacteria/viruses just lay there dormant just waiting for the right opportunity. Another part of the story is also the number and migration of these bacteria/viruses. A leaky gut means the flora of the gut migrates to the blood stream reaching the brain etc. That seems to be a characteristic that healthy people do not have.

 

[Sing]

I think you both have points, Tito and Ema.

My body and I opted for cortisol supplementation as I both tested low and had the symptoms of hypoadrenia. In terms of ME/CFS, I had a sore throat and symptoms of coming down with the flu. Once I supplemented with cortisol morning and afternoon, these symptoms left and I could function at a low normal level, as long as I avoided high speed, loud, intense or long exertions. I don't have the fight or flight capacity at all, almost no adrenaline response, but...with the addition of cortisol at least I am not just lying down with a sore throat, feeling like I have the flu every day. So this is why I know the addition of cortisol to a hypo system like mine does help my immune system function better. I am not saying that the points you raise, Tito, could not be factors. But I see this choice as a matter of priorities. There are up and down sides to almost everything--what offers the best benefit to cost ratio is the better choice, as I see it.

 

[SanDiego#1]

I really thought Ema did a good post on this.. My doctor does the same as Emas doctor did as far as starting it goes.

I thou disagree that testing aldosterone will show who Florinef may help. Many of us myself included dont have low aldosterone but still find Florinef to be of great help for those issues in which are connected with low blood volume. Having issue involved in which low blood volume is probably playing a factor, is a good enough reason to give Florinef a trial.

and to the one who was asking about salt. Yes you do need to increase salt intake with this drug. Without enough salt, it wont boost the blood volume.

Ive been on Florinef since the start of this year.. and havent found it affecting my immune function. (thou I do get reactiving things with the ME). If you are on Florinef, you do need to be carefully monitored due to it can do bad stuff to your electrolites etc. (my doctor always gives me another blood test after a dose increase).

This drug has GREATLY improved me. 50%+ improvement to what I was able to do before it. With this and support stockings.. its nearly doubled the amount I can do.

And as far as.. is this drug good for my body goes.. well I dont think lack of blood getting to my brain and having obviously bad blood flow to organs etc would of been being healthy for them and me anyway. Blood carries oxgen and helps to clear buildup of things.. so Im happy knowing my body is getting the blood it needs to places better.

 

[SanDiego#1]

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.

 

[Sing]

I had a primary care doctor once who was up on her research. She had me do the saliva test--think it is called the ASDI test. Anyone can order it, take it and send it back--it costs something over $100. HOWEVER, you have to be off certain hormones for a couple of weeks, other things for days, and must avoid certain foods and drink while testing, because it is very sensitive. You test 4x during that day. It will show the amount of cortisol--and you can add other hormones like DHEA to the list of things for them to check. It shows how much is circulating and available compared to the norm. Then they send you a detailed report and graphs.

This test is more precise than just a blood test first thing in the morning, when your cortisol level might be okay, which is one of the more standard ways of testing it. Another more standard way of testing is the 24 hour cortisol test in which you collect your urine for 24 hrs. This will also show the volume of your urine--if, like a lot of us, you also have the symptoms of diabetes insipidus--i.e., drinking and peeing excessively. But the 24hr urine won't show where your peaks and troughs are, in terms of cortisol production. This is needed if you are going to use supplementation, and also to show just how far off normal your results might be.....

 

[Sing]

Just looked up the section on preparation for labwork in a book called Stop the Thyroid Madness by Janie Bowthorpe. She also has detailed information on other hormones besides the thyroid ones, which do all interact. So, this book says it is necessary to stop all cortisol, adrenal supports and herbs for two weeks before taking the saliva test for cortisol. Sending it to a good lab by overnight mail early in the week is also necessary.

 

[SanDiego#1]

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.

I am so impressed with the knowledge you ALL have on this testing. I did have the saliva testing Cortisol in Feb 12. It came back my adrenals were barely functioning. I was put on DHEA low dose and very low thyroid, plus neutraceutical of Manganese, Copper. and This was by an Environmental Dr. Within a week, I was starting to feel better. Now being checked again by CFS Physician on everything. This test will be included. CFS Dr. Magnesium/Taurine formula has worked wonders with my Heart Racing and Sleep. I am on very few meds other than Immune Globulin shots. These I have been on for 18 years. Have not heard of anyone in this forum even mention them. Is any one else on them? My CFS Dr. said they were CRITICAL FOR ME!!!! Thank all of you for your wonderful input.

 

[Sasha]

I am looking forward to the approval by the FDA of Droxidopa by Northera (I hope that is the right name and drug company--going on a leaky memory) which has been used successfuly for some years in Europe and Japan for NMH. It works at the neurological level and is primarily targeted on helping Parkinsons patients. I want help with the neurally mediated part of this hypotension rather than just filling up my legs with fluid and trying to mechanically force it upwards by means of bands-of-steel stockings. Sorry for the drama, but I wish we could get treatments which focus much more closely on the source of the problem rather than its downstream effects.

Hi Sing - I'd never heard of Droxidopa, that's v. interesting. Here on Wikipedia:

http://en.wikipedia.org/wiki/L-DOPS

it mentions:

Though [Droxidopa] has been used in Japan and Southeast Asia already for some time, it is also currently in clinical trials at the phase III point in the United States (U.S.), Canada, Australia, and throughout Europe. Provided L-DOPS successfully completes clinical trials, it could beapproved for the treatment of NOH as early as 2011.

 

[SanDiego#1]

Hi Sing - I'd never heard of Droxidopa, that's v. interesting. Here on Wikipedia:

http://en.wikipedia.org/wiki/L-DOPS

it mentions:

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. Very interesting info on the L-DOPS.
Thanks everyone.