Has anyone successfully weaned off prednisone without using a biologic
Has anyone successfully weaned off prednisone without using a biologic and if so, how long did it take and what were your symptoms along the way?
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yes. I was one that did not have elevated inflammation markers. ESR and SED rate were in normal range. My HSCRP was elevated but apparently that can be something else. I had no pain felt like a million bucks on 10mg. I tried at 3 months to reduce and pain came back. I tried again at 4 months and some discomfort but was able to drop to 5mg. I stayed here for another month then dropped to 2.5mg. Increased pain but an aleve would sort of fix it. At month 6 I went to zero. Still having discomfort, light headed, gurgling stomach, BP was up, cholesterol was up, A1C was up. On scale 1-10 I was about a 6-7 in pain. Took about a month to feel better and about 3 months to feel normal.
Thanks for info, am on 10mg right now and feel good. Hoping to drop down at end of month, hoping blood work stays within normal limits.
@tobeybaby
I have a long history of prednisone use for my asthma and reactive arthritis. So I have successfully been weaned off many times, even with my first flare of PMR. I’m currently on my second flare of PMR and my rheumatologist feels I need to be on a biologic to control my symptoms and to wean off prednisone. Right now this is on hold but I’m going to try the Actemra soon, I hope.
I was diagnosed with PMR in May, 2023 and began with 25 mg of prednisone. My taper was very slow, started at 2.5 per month for a few months then 1 mg until June 2024. All during the taper I had no adverse reactions or joint pain. When I finally stopped on June 1, initially there was no discomfort. However, after about 4 weeks I began to feel pretty stiff in the morning. Walking and my exercise routine (yoga and gym workout) helped as did some Advil. I just had an appointment with my rheumatologist and all my blood markers were in the normal range. While the dr does not think my morning discomfort is related to PMR, I feel like it is my body adjusting to being off prednisone. My discomfort is manageable and my hope is that it will gradually decrease. So a long answer to your question, I did not have to use a biologic in order to wean off prednisone. I can only hope that I don’t experience a flare in the future. Good luck with your PMR treatment. Carpe Diem. Liz Ward
@tobeybaby, I've had PMR twice and was able to taper off of prednisone both time without using a biologic. First time took me 3 and half years to taper off and it stayed in remission for 6 years. I was again started on 20 mg prednisone and was able to taper off of prednisone in 1 and a half years. I think it was easier tapering off the second time around because I changed my lifestyle and started eating healthier and exercised more. I still struggled in the mornings for both times with the PMR with aches and stiffness but it gradually got better. I have been in remission for the second time for a little over 6 years and hoping it never comes back.
Thanks for feedback. I’m still finding my way as I was newly diagnosed in May.
Thanks all the info I’m getting is helpful. Newly diagnosed this past May. Started on 20 mg prednisone and no doing 10mg. Hope to decrease at end of month. I guess blood work and how I feel will determine that. Right now just feel I want to stay away from biologics.
Yes, I ended six weeks ago (July 6). PMR had started in mid-May of the previous year, started 15mg Prednisone at the end of June which was increased to 25mg 10 days later. Initially my tapering journey had decreases of 2.5mg every week - the doctor said to expect discomfort for the first days after a taper but if very uncomfortable, to return to last comfortable dose. My notes indicated that I stayed at some levels slightly longer. Although the rheumatologist had been thinking about methotrexate? in late August she said that I was doing "too well" and for now, to continue with Prednisone by itself.
At 10mg, I was told to taper by 1mg every 2-4 weeks. I decided to interpret the 1mg drop along the lines of never going lower than a 10% drop from the current dose, and that's when the pill splitter came into play. Drops were .5mg every 10 days, which went smoothly until 5mg. I knew that this was going above 10%, some discomfort at 4.5mg, far more at 4mg. Since this wasn't working, I returned for one day to 5mg, then restarted at a rate of .25mg every 10 days. Although I'd hoped to end by April, this doubled the time... but no discomfort. Towards the end I was cutting a 5-mg pill into 8ths, a 1-mg into 4ths, skipping a day now and then. It was comfortable enough that 10 days had gone to 7 days.
This is the Afterwards Time, 6 weeks on. Although initially all seemed fine, I am now experiencing stiffness that wasn't there pre-PMR or while on Prednisone, very noticeable any time I stand up. I'm also 80. I'm fully functional, can mow the lawn and do whatever I did before. Sometimes I wonder if things would be better if I took a low dose of Prednisone, must reject that because there is no safe dose. So ... it's tolerable.
Yes,my rheumy started me on Methotrexate soon after she started me on Prednisone. I was on Prednisone for five months. I am still on Methotrexate which I'll be on another year but she is very slowly weaning me off that. I am 82 and have had no flare ups at all since the original onset. I feel very lucky and very grateful! Good luck to you.
Yes, I did it back in 2015. Though, I'm not sure you would call it successful. I did. The PMR roared back, but I'd gained 90 lbs by then, so I just had to do it. It turns out it the weight gain was going to kill me. So, getting off the Prednisone was lifesaving. It also was putting me on the road to going blind. I've had to have 3 laser eye surgeries for the Glaucoma the Prednisone caused. And my eyes have to be checked many times a year now, to catch it, and treat it. Going off meant just reducing it as slowing as I possibly could. I mean by using 2 mg Prednisone tabs at the end. I also used Pain Management's services to endure the pain and they, of course, always gave me the lowest possibly hydrocodone with Tylenol. AND steroid shots into whatever joints hurt the worst. The amounts (I was told) of steroids injected, is small and localized so they don't act like when we ingest it body-wide. See if you can get in with Pain Management? One caution. While all this was happening, and during the going off, as well as after (big time) every prescriber told me, automatically, to take Ibuprofen or wrote script for prescription NSAIDs. So, that was most of the time from 1992 to now. Turns out, doing that has harmed my kidneys and some of those prescribers knew it. I gotta get over that. Don't let them do that to you. Watch it yourself via your labs, or better yet, have your doctors do it.