My cardiologist put me on a small does of Florinef (a corticosteroid) for Dysautonomia to raise my BP and heart rate.
I was wondering if small doses of corticosteroids are safe for those of us with Lyme? I was dx'd with Lyme, Babs, and Ehrlichiosis nearly 11 years ago.
[ 05-12-2009, 08:57 PM: Message edited by: Capa ]
Posted by Capa (Member # 18930) on :
While I am bumping this to find out if anyone has suggestions I also wanted to clarify that I am asking as I have heard that corticosteroids can be detrimental to us Lymies as the are immune suppressants.
Posted by Keebler (Member # 12673) on :
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Normally, corticosteroids are not safe for lyme patients.
However, I do think I've seen posts by some here who are on low dose of Florinef (for NMH drops in blood pressure) and some are on low dose of Cortef (for adrenals).
The difference can be, partly, if the Rx is making up for the lack of natural hormones in the body - just enough to bring the body back into balance so that it does not need to work so hard.
I don't have an exact answer for you, but (if you are already taking this) I think you can breath easy if it is low dose and you are not feeling like you got shot full of caffeine.
If you have not yet started the Rx, I'd wait for the answer to this. But, oh, wait!
Do you have an LLMD? Or an appointment scheduled? As your LLMD. That is preferable.
Otherwise, hopefully, someone will come along with the exact answer soon.
It is good that you ask.
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Posted by Keebler (Member # 12673) on :
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You might get more specific replies if you edit your headline to include the word "Florinef"
I just took a look at Singleton's "The Lyme Disease Solution" - I could find no listing in a logical place in the index that addresses Florinef or NMH.
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Posted by dguy (Member # 8979) on :
Any steroid is likely to reduce your immune response. Florinef did so for me. However, florinef seems to induce less immune supression than other steroids. IMO, for lymies all steroids are last resort, and to be used only when excess inflammation is producing a dangerous situation.
Posted by Kathy622 (Member # 14077) on :
Personally, I would not worry about taking Florinef for POTS/dysautonomia.
My daughter (in treatment for LD) has been on it for over 2 years, prior to her lyme dx. It has helped her a great deal ... much less dizziness/lightheadedness, higher, more stabilized BP.
Two highly esteemed LLMDs have not had any problems with her taking it, and she's on a lot of meds/supplements.
Posted by Geneal (Member # 10375) on :
I've taken both florinef and cortef.
I've never noted any bigger issues other than improvement
For my POTs and NMH on them both.
I have cut my dose as treatment progresses and other
Systems such as autonomic system seems to be coming back on line.
Hugs,
Geneal
Posted by Capa (Member # 18930) on :
Thank you so much for these replies! For those on Florinef; have you experienced any side effects?
Posted by cactus (Member # 7347) on :
I take low dose florinef and cortef, too.
Rx'd by my LLMD.
Great improvements on both.
If your body is not producing any corticosteroids at all, then it's necessary for you to supplement some so that you can heal.
The trick is to supplement only the amount your body would be producing, a physiological dose.
No side effects - only massive improvements.
Posted by Capa (Member # 18930) on :
What type of testing is used to determine whether or not corticosteroids are being produced by the body?
I did have adrenal testing and everything came back normal. I was put on Florinef due to symptoms (dizziness, low BP/heart rate) and after fainting during the tilt table test.
Thanks!
Posted by mjbucuk (Member # 843) on :
my side effect is that I do not have to get up to pee overnight!! Posted by Capa (Member # 18930) on :
quote:Originally posted by mjbucuk: my side effect is that I do not have to get up to pee overnight!!
Sounds good to me!! So far I haven't had this benefit but maybe once I am on a higher dose I will.
Did you experience any weight gain?
Posted by Lymepool (Member # 15827) on :
Florinef really helped my kid's POTS; takes it along with midodrine. The former causes the body to retain some fluid, which lifts the blood pressure. This is a good thing, as it keeps the bp from dropping when you stand up. (The ability to stand and walk is dependent on "hydraulics".)
Retaining fluid means weight should go up. (I think water weighs 8 pounds per gallon.) So a few pounds of weight gain probably means it is working.
It may take a few rounds with the cardiologist to work out the best dosage for you. The pediatric cardiologist added midodrine rather than increasing florinef, because corticosteroids can suppress the immune system. So most docs do use them in moderation.
My adolescent has had these medications for a year and they don't seem to have held her back in the babs therapy.
Hope you feel better soon. Fainting is a scarry thing.
Lymepool
Posted by Capa (Member # 18930) on :
Thank you for this information Lymepool! I really like the idea of using the Midodrine instead of increasing the dose of Florinef. This is something I may bring up to the cardiologist at my next appointment.
I truly appreciate all of your help.
Posted by Rumigirl (Member # 15091) on :
Even Dr. B said, when I asked him, that taking Florinef HELPS Lyme patients who need it. For me, it makes the difference between being able to be upright or not! And Florinef isn't a corticosteroid, it's a mineral steroid (helps the body retain sodium, thereby increasing BP). I wouldn't be afraid of it. It's a lot better than passing out.
Even Cortef, when needed, at physiological doses, helps rather than hinders Lyme treatment.
Posted by Lymepool (Member # 15827) on :
Hi Capa,
There are quite a few drugs the cardiologist could use. It really depends on your personal combination of symptoms. Rumigirl is right that the passing out thing has really got to be controlled. That falls into the category of "imminent threat" to your health.
My kid had a real issue with the tachycardia and doc considered atenolol at first. But the first trial with florinef, plus heavy salt/fluid consumption worked pretty well and topping it all off with midodrine stabilized everything.
Both corticosteroids and mineral steroids are substitutes for aldosterone in the body. Aldosterone acts on the kidneys to maintain the potassium/sodium/water levels in the body. Did the cardio recommend a change in salt or fluid in your diet?
Lymepool
Posted by lymetwister (Member # 19590) on :
Is Florinef indicated for Hyperadrenergic POTS ? My BP goes up when I stand. Not to crazy numbers, but I'm like 115/70 sitting and when up, I'm like 135/90.
My Cardio just put me on Florinef, and I'm scared to death to take it.
I do have tachycardia while standing, but my HR is like 80's sitting and only 120 standing.
I had a pos. tilt table test about 2 mos. ago. I was having drops in BP during the test, but it has since changed to Hyperadrenergic. I don't think my doc. gets it.
It has changed while treating the Lyme. My private disability insurance requires me to follow the Dr.'s advice, so I at least have to fill it.
BTW, I'm on Inderal LA 60mg (Beta Blocker) and that is keeping the Tachycardia somewhat in check.
Will Florinef bring any benefit by taking it with my symptoms ?
Posted by Capa (Member # 18930) on :
My cardiologist did suggest that I increase salt intake. I am already drinking too MUCH water so he said just to continue as I am doing.
So far I do think that the Florinef has helped a bit. I gained 2-3 lbs the first week; hopefully this will stabilize!
Posted by joey20021714 (Member # 20113) on :
I have Dysautonomia also and have taken Florinef and Midodrine.
They aren't recommended for Hyperadrenergic POTS, but can really help other types of Dysautonomia by raising your BP.
The best meds for Hyperadrenergic POTS are typically Beta Blockers, Klonopin, Clonidine, and SSRI's.
Hope this helps!!! : )
Posted by WildCondor (Member # 434) on :
Florinef is NOT a steroid the way you are thinking. It does not act like a corticosteroid like Cortisol. It's job is to act on the kidneys to help your body maintain a greater blood volume, thus, increasing blood pressure. If you have both types of NMH/POTS then you probably need a beta-blocker plus Florinef. I took Florinef for 2 years under the care of my LLMD and it was nothing but good!
Posted by Capa (Member # 18930) on :
Thank you so much for the replies, this is excellent, and promising news!
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