← Return to Kevzara and Prednisone Tapering before and during Kevzara

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@dadcue

I will try to answer your questions but I don't have any experience with Kevzara. My rheumatologist asked me if I wanted to try Actemra about 4 years ago to treat refractory PMR. I took prednisone daily for 12 years while my primary diagnosis was PMR. I have some other autoimmune disorders but Actemra was prescribed specifically for PMR.

1. What was your starting dosage of prednisone and how long have your been taking prednisone?------My starting dose was 40 mg of prednisone when PMR was first diagnosed. I reduced slowly to 30 mg after 5 years. I was still taking 20 mg after 10 years. At the 12 year mark my rheumatologist wanted me on the lowest prednisone dose that I could tolerate. I got down to 10 mg with pain and 15 mg without pain.

2. What was your daily dose of prednisone before Kevzara (Actemra)?----- 10 mg

3. What was your prednisone tapering schedule before starting Actemra? ----- It depended on how I felt. My rheumatologist wanted me down to 10 mg and then taper by 1 mg per month -- I relapsed whenever I tried to do that.

4. What was your lowest dosage of prednisone before Actemra and did you have difficulty dropping below that dose? ---- 7 mg was the lowest dose that I could maintain for any length of time. Anything lower than 7 mg resulted in what I described as a "pain crisis"

5. What is your tapering schedule now that you are on Actemra?----I have been off prednisone for the last 2 years. After Actemra was started, I tapered by 1 mg per month for the first 3 months. Then I tapered by 1 mg per week down to 3 mg. My rheumatologist told me to stop at 3 mg in order to be evaluated by an endocrinologist for adrenal insufficiency. I stayed on 3 mg for about 6 months until my cortisol level was "adequate." My endocrinologist told me to stop prednisone with some safeguards in place in case of an emergency.

6. How successful has this schedule been so far and have you had any flare ups? --- I flared within a week of stopping prednisone the first time. The flare wasn't a PMR flare but oneof my other autoimmune conditions flared. A diferent biologic (Humira) was tried along with 60 mg of prednisone again. I was able to decrease back to 15 mg but PMR returned and was getting worse. When Actemra was restarted and Humira was stopped, I tapered from 15 mg to zero in 2 months the second time. I continue with Actemra and haven't had any relapses for 2 years.

7. What is your target date for stopping prednisone?---- No target date was ever set. My rheumatologist didn't want me to take prednisone or the rest of my life. However, if it was 3 mg or less, that would have been acceptable. My rheumatologist was thrilled that I got to zero.

8. What changes have you noticed in your health, aches and energy level since starting Actemra? -- More energy is what I notice the most. I'm still not 100 mg compared to pre-PMR. I would have described my health as "excellent" before PMR even though I had other autoimmune conditions. I only took prednisone "short term" for my other autoimmune flares. Things went downhill quickly after about a year when I started to take prednisone on a "long term" basis for PMR.

Now that I'm off prednisone, I was able to stop 3 BP pills. I reduced a cholesterol medication to a very small dose. I don't take any other pain medication except for Actemra but my GP says Actemra isn't a pain medication. I still have some pain from severe spinal stenosis which is assumed to be degenerative arthritis. I think inflammatory arthritis more likely caused the problem. Prednisone isn't recommended for the treatment of inflammatory arthritis.

It was interesting that I developed a large synovial cyst that made the spinal stenosis worse. A neurosurgeon wanted to do surgery immediately but I wanted to wait to see if things improved. I was off Actemra when the synovial cyst developed. When Actemra was restarted the synovial cyst disappeared. A synovial cyst is usually caused by inflammation.

The synovial cyst went away but I still have severe spinal stenosis.

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Replies to "I will try to answer your questions but I don't have any experience with Kevzara. My..."

Sorry ... My energy level is still not 100%.

I got mg and % mixed up and I couldn't edit it before my time for editing expired. Why is there a time limit for editing?