← Return to Has anyone successfully weaned off prednisone without using a biologic

Discussion
Comment receiving replies
@dadcue

What you have described is one of the reasons why long term prednisone use can end up being detrimental to your health. There are times when the side effects from medications exceed the benefits and Prednisone is no exception. It is nearly impossible to abruptly discontinue Prednisone when it is necessary.

"So, getting off the Prednisone was lifesaving."

I agree with you ... it was for me too. However, I needed a biologic when I was unsuccessful at tapering off prednisone for 12 years. I'm in awe of anyone who succeeds without the help of an alternative medication.

I tried several alternatives until my rheumatologist found something that worked. My medical records shows a list of "failed" medications. I suspect the other medications failed because they didn't get me off Prednisone rather than they didn't help to manage PMR pain. Even when my rheumatologist submitted the request for the biologic -- what was emphasized the most was an "inability to taper off Prednisone."
"

Jump to this post


Replies to "What you have described is one of the reasons why long term prednisone use can end..."

Been thinking about your remark of being "in awe of anyone who succeeds without the help of an alternative medication."

I had no choice. I was given no choices. I was living in Alaska, we didn't even have a Rheumatologist I could get to. I still don't have one, even which a new diagnosis of CFS to deal with. It's not new, they're just finally getting around to that one, it was there before the PMR. We had an ARNP who ordered the Prednisone for me, she even diagnosed it (right). I went off and just sucked it up, pain-wise. Because imagine for a minute you suddenly had to do everything with a 90 lbs extra on your back (whole body). You drop something on the floor, you get down and then gotta get back up with 90 lbs on your back? Go to the bathroom, imagine what that does to your knees, everytime, up and down when you're a girl. Worse to get into the tub and back out, very carefully, so as not to slip. The stress that put just on my heart was terrible. I had to make the weight gain stop, or die. I knew the weight gain was gonna kill me if I didn't make it stop. I had a minor child to finish raising and her Dad died back in 2002.

I am a person of Faith. I had to trust there was another way. That other way turned out to be a new PCP who told me she thought I'd just plain have to leave Alaska. Well, that made me mad, and then it took me a few months to wrap my head around it, and decide she was right. My kid had to finish school, at least, that year's grade. Then, we did leave. Meanwhile, I got referred finally to a pain management doctor up there, who did have mercy on me and wrote hydrocodone and did some tiny steroid injections in joints. And in the end, we lost all but what we flew out with, in suitcases, and what was in my van that I'd put some extra stuff in, and had shipped down separate from the rest of our household stuff.

Art, some old furs, almost all my furniture, handmade rugs, clothes, everything else got stolen by the movers. Bummer, big time. That was 8 years ago and we are just now getting the nice home something like what we lost by moving.

Why moving? The cold. It turned out the most important thing for me with the PMR was the cold up there. Even my fingers and hands had started turning white indoors, up in Alaska, which is another autoimmune disease. Without the extreme cold, and by staying warm (not hot) long enough my PMR went into remission. If I get caught in the cold too long here, it tries to come back again too, every time. So, I use a heated throw over my feet, most nights. Sorta cheap compared to the other options. I still needed both feet operated on once I got out of AK. One right away, and the other, finally, earlier this year. They both now have metal in them, reinforcing them.

The Lyrica I'd been put on in AK has turned into Gabapentin, and there's Tylenol, and lots of other non-opoiods, but the PMR stays away. It's lurking though.