Struggling to taper steroids and tips please

Posted by jodipat77 @jodipat77, 4 days ago

Here in the UK and my daughter is 19 and been on prednisolone for 2 and a half years for RA. She takes it along side Tofacitinib. She's currently just dropped to 2mg after managing to get to 3mg 6 weeks ago. Each time she drops she gets horrific headaches though and her one knee swells up. Any suggestions on things that can help taper please? She really wants to be on 1mg by her birthday in mid September but I don't want her to become more ill. She gained 42 pounds on steroids and has now lost around 32 form tapering so she's keen to get off them complete. Thank you so much for any help

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momac59 | @momac59 | 1 day ago

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.

pm56 | @pm56 | 3 hours ago

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 😊