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Struggling to taper steroids and tips please

Autoimmune Diseases | Last Active: 11 hours ago | Replies (15)

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Profile picture for momac59 @momac59

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.

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Replies to "I’m going through the prednisone taper balancing act really now. I was brought into Mayo Clinic..."

@momac59
When I had PMR I tapered 1 mg per month until I got to 0. Maybe you are tapering too much (10 mg) too fast (2 weeks). Your adrenal gland needs time to start working again after being suppressed by the steroids. I never had any bad side effects from prednisone-it gave me a lot of energy so I was active and never gained any weight.