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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Where is your endo and can I get an appointment, pretty please?My endo is unusually smart in this respect - he understands that you cannot just base all decisions off lab tests for hormones because different people react differently. You have to listen to your patients, take histories, try things, and have the patient report back as to whether symptoms are better, worse, or the same. Most docs are slaves to the lab test reference range.
@Woolie, during the time you've been having success with the prednisone, have you also been supplementing vitamin D? And if so, how much? And/or do you also get a lot of sun exposure? Thanks!The positive effects don't wear off. The only other thing I'd want people to know is that its all about dose. When I first tried pred, I did 20mg. That worked for two days and then the symptoms came back. I raised the dose to 40mg, and the symptoms went away and stayed away. Soon I was able to gently drop the dose down 2.5 mg at a time, now on 25mg and still working. Blast-then-reduce seems to be a common strategy with prednisone. Most people who have commented here on PR have probably not taken enough pred to get enough of a reduction in immune activity to get relief.
Hi @cb2, the trick with pred is to complete the course, and drop down slowly. Usually, the doc or the phramacist will give you explicit instructions - often something like "Take 20mg for four days, then 10 mg for the next four days, etc...." Its very important to drop down slowly because you body needs to relearn to produce its own cortisol. Otherwise, you can end up with a sudden lack of cortisol.I have been taking HC at 25mg in divided doses for a few years it has helped alot- however last week i had to take predisone 20mg for a rash, and by the 4th day, i felt really good .. good energy good mood.. rash almost gone so i stopped the predi now low energy crash again- maybe i need an adjust to the HC?
@Woolie someone told me that some folks do better with longer acting steriods so i guess that would attribute to the predi working for some. I know when i first started HC a few years ago it was a life saver- ! now i have no idea how to tell if i am on the right dose of HC ?
as far as the pred goes, i asked 2 drs about the taper and they said 20mgs a day wasn't enough to need a taper- but yesterday i only took 10..so i was kinda trying to taper myself...maybe i will take that 10 again tomorrow. they only gave me 7 tablets so not enough for the full dose plus taper-
time will tell.. but i like feeling "normal" on the pred.. wish we knew more .. gald you have gotten some relief : )