Struggling to taper steroids and tips please

I’m going through the prednisone taper balancing act really now. I was brought into Mayo Clinic EMERGENCY in Arizona last April very sick in an autoimmune firestorm. I gave a few autoimmune diseases but they found a new one; Giant Cell Arteritis/Polymyalgia Rheumatica (GCA/PMR). I was on very high IV Steroids for 2 weeks in the hospital. When I did get the ok to go home I was only able to due to an infusion of Actemra. Every time they tried tapering in the hospital to get to the 60mg of oral prednisone needed to discharge me, I would relapse to until they tried the Actemra.
These last couple of months I have been reducing my dosage by 10mg. every 2 weeks & have had a few mild symptoms come back on & off. But once I got down to 20 mg a few days ago, things got worse. Yesterday I called my Rheumatologist & they had me increase the prednisone to 25mg & a couple of hours last I felt a lot better. So for many of us slow taper is best with good communication with your doctor.
I’m waiting for my Actemra to arrive so I can do injections at home. I so hope it can help me get off prednisone one day. But I will be patient.

One of the issues that doctors often overlook discussing with patients is adrenal insufficiency. After being on steroids for a while, her adrenal glands have been suppressed by the steroids she’s been taking, hence the slow taper to allow her adrenal glands time to “wake up.” However, many feel tired and have joint pain or have other mystery symptoms during tapers and believe it is their underlying autoimmune disease flaring as they wean when in fact it is their body struggling to adjust as the steroid decreases and their body is having difficulty making cortisol as the glands aren’t functioning properly.

2 years is long enough for suppression to occur and headaches is one the symptoms of secondary adrenal insufficiency. The body needs 5mg a day of cortisol and she’s below that, so it might explain why she’s having headaches at this lower dose. Can you ask for a referral to an endocrinologist? They can do an ACTH stimulation test which is the gold standard to test if the adrenal glands are still working.

Best of luck with your daughter 😊

I have had Rheumatoid Arthritis for 50 years now. Needless to say back in the day they did not have the drug approach there is today. I have multi joint deformity and several replacements. Anyways I have been on Prednisone which is harder for the liver to process than the one your daughter is on. Had to be on 20 mg back when I still had to keep working. I gained much weight up to 197 pounds. Great big moon face…awful it was ! Last November I was in a terrible state, couldn’t even get out of bed…full blown whole body pain and had to be taken by EMT,s to hospital where the put me on 50mg Prednisone to stop the flare up. Then when I got home decreasing the 5mg tabs by a half every week thereafter. So it was 49 and 1/2 tabs the first and so on cutting 1/2 tab each week until I got to 25 mg to be taken each day. I have gained weight again…have the moon face again…but also have some side effects that I didn’t have years ago.
Its messing with my mind and its creating soaking sweats in me that are just horrible..soaking wet..sweat running down my scalp..awful !
Prednisone is used as a quick fix for many different medical issues . Has it really done me a good thing in my 50 years of having this chronic illness ? Yes it let me work when I had to. Now at age 81..its doing nothing for me except giving me something else I didn’t have before. Sorry if this isn't what you wanted to hear..but it is what it is….for me. Your daughter should be on the new meds. That are out there for RA…..but definitely I would ween off the steroids.
I am so sorry your daughter has this…she is so young. I myself was a young mother of two young boys when I got it.
Do your best