My 14 year old daughter is very unwell and needs to take Florinef. I've done extensive reading on this board (and other places) but mainly on this board I have found many people stating that they believe Florinef is contraindicated in Lyme as it is a steroid and will therefore suppress the immune system.
I find this an odd statement to make since Florinef is widely used by many LLMD's including Dr. B and has been for years. It is also used by many top CFIDS doctors for their patients with OI symptoms.
So, to the people who have stated that Florinef is bad to use in Lyme I would like to know why do you think knowledgeable doctors continue to use it freely?
There are other treatments for OI symptoms. ie; Midodrine, Atenolol, etc...
Posted by tanzi2u (Member # 9237) on :
As it was explained to me by 2 different doctors, Florinef is a mineral steroid and functions differently than the anti-inflammatory steroids. Our LLMD feels it is fine to use at the lower prescribed dosage.
Posted by Stardantzer (Member # 3681) on :
Thank you tanzi2u that does make sense.
Posted by TerryK (Member # 8552) on :
I am just using common sense in my assumption that suppressing the immune system is not wise when you have a massive infection like lyme and co-infections.
We are not doctors here, just mostly patients. I think you should ask your doctor why he thinks it's OK to use it when it suppresses the immune system. There may be circumstances for your daughter that balance the immune supporession risk vs benefit. Perhaps not treating with a volume expander would be more detrimental to her health.
Your LLMD is in a better position to know all the reasons that he feels treating with florinef is valid for your daughter. Terry
Posted by notkrazybrian (Member # 10621) on :
I take florinef, it is a steriod, but works in a different way than say cortef or prednisone. Im assuming your daughter needs it because of blood pressure problems, maybe NMH. I would listen to the LLMD on this one and if he agrees shes needs it then she must need it. I would think the benefits outways the negatives. Th LD will probably put her on potassium supplement as well, florinef steals your potassium.
Posted by dontlikeliver (Member # 4749) on :
It is different than the 'normal' steroids.
Posted by WildCondor (Member # 434) on :
Florinef IS different (it's a mineralocorticoid)from other steroids! Dr. B gave me Florinef and it does not cause the side effects that prednisone does. Florinef acts on the kidneys to help keep up blood volume and blood pressure. Make sure you drink lots of water and know how to manage the Neurally Mediated Hypotension (NMH)Has she has a tilt table test? Thats the only way to tell is she needs florinef, a beta blocker or both. Make sure it is done whith part 2 the Isuprel challenge. Midodrine is sometimes used as is zoloft and licorice. Atenolol, florinef, zoloft and xanax, plus magnesium and good hydration were essential for me, and it does improve as long as the Lyme is treated so the inflammation of the vagus nerve can heal as best it can. Posted by WildCondor (Member # 434) on :
Yes, my daughter and I have both had tilt table testing.
I have been sick for more than 20 years with supposed Lyme, CFIDS who knows and now my daughter is too ill to even attend school.
She passed out within 4 minutes of the upright tilt and the second part of the test was therefore unecessary.
She is reluctant to take any meds but has started on the Florinef since her sxs are so severe.
We will be seeing a prominent Pediatric Hypotension doctor on March 1st to see if there are any other treatmens he might suggest to help her feel better.
She's been on Zithro for 5 months with ZERO improvement at all and is discouraged.
Posted by serendipity (Member # 8474) on :
Stardantzer,
I was hesitant to take florinef even when my POTS symptoms were severe, enough to land me in the ER once a week.
Florinef is a synthetic form of aldosterone, produced by the adrenals, increases blood volume by telling the kidneys to hold onto salt.
I began salting my water (also drinking more water) and using herbs (currently licorice root, schizandra fruit, and astragalus) to heal my adrenals so they would produce aldosterone on their own . Now my dysaautonmia symptoms are completely gone. Treating lyme and coinfections and lowering my bacterial load played a huge role also.
[ 18. February 2007, 04:31 PM: Message edited by: serendipity ]
Posted by Stardantzer (Member # 3681) on :
Interesting, thank you. Yes, my daughter is a frequent ER visitor and I feel so bad for her.
I currently have her on Licorice and will look into the other two you mentioned.
She's stopped the Florinef at the moment as she's terrified of side effects.
Posted by WildCondor (Member # 434) on :
What side effects are you worried about? Florinef is not a steroid like prednisone is. Good that you are going to the cardiologist! They often knock herbal stuff, so don't be surprised if they scoff at the mention of licorice. Hang in there!
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