← Return to GCA prednisone vs. actemra infusion therapy

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@susang222

I have one more question. Do you know what the lower lever of prednisone you were on before you switched and did you relapse on the prednisone? I am on 25 mg now and don't know how low I can go.

Thank you.

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Replies to "I have one more question. Do you know what the lower lever of prednisone you were..."

My rheumatologist wanted me to taper my prednisone dose as low as possible before starting Actemra. I already knew where problems developed so I didn't spend much time doing a slow taper lower. I could tolerate the pain on 10 mg but 15 mg was better. Decreasing from 10 mg to 7 mg made the pain worse and inevitably I would go back to 10 mg. I considered 10 mg to be my "lowest effective dose" at the time Actemra was started. Bear in mind it took me 12 long years to get to 10 mg. Most of the time I was between 20 to 30 mg of prednisone or more.

The moderately high dose of 25 mg is not a good place to be in the long run. It might be fine if you can get to less than 10 mg relatively quickly as in a couple of months and not a couple of years. Even 10 mg isn't good in the long run.

My rheumatologist said if I only needed 3 mg of prednisone he would not have been overly concerned. He said that he never would have suggested Actemra if I only needed 3 mg. In any case, 10 mg was my prednisone dose when Actemra was started.

I tapered cautiously by 1 mg per month for the first 3 months after Actemra was started. I got to 7 mg and didn't have a hint of more pain. I threw caution to the wind and tapered by 1 mg per week until I reached 3 mg of prednisone.

When I reached 3 mg, I asked my rheumaologist what I should do next. I had to stay on 3 mg for six months until my adrenal glands increased their production of cortisol. My main problem tapering off prednisone was due to adrenal insufficiency caused by long term prednisone use. When my adrenals were producing "adequate" levels of cortisol, my endocrinologist said "it might be safe" to stop prednisone. I went from 3 mg to zero in a couple of days.

There is no correct way to taper. It depends of many factors and as everyone says, "we all all different."

I believe I was down around 5mg. I did relapse on Pred but I was trying to get off of it as quickly as possible. It would make me horribly tired. And my issue at that time was more GCA than PMR. The PMR seemed to fade fairly quickly after I started Pred, but the GCA went on for 4 years. The other thing was that along with my relapse I was also dehydrated, at least that is what the blood tests showed after I ended up in the hospital. Just remember, we all have different reactions to medicine, tolerance to pain and so forth. When I was tapering, my biggest problem was being tired. I could stay in bed on and off for 3 days sometimes.