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Prednisone tapering is challenging. What does remission feel like?
Polymyalgia Rheumatica (PMR) | Last Active: Sep 3, 2023 | Replies (209)Comment receiving replies
Thank you John. When I am reminded of the specific symptoms of PMR it does fit. I think the dancing around on pred dosing is the issue. I started at 20.and had fast relief of horrible pain...especially in my hands. They.feel sore sometimes now but the other symptoms are more present...girdle, R arm, tired neck not really painful....and exhaustion and feeling sick, very swollen ankles and top of my feet. I have gone from b 20 to 15 to 10....one month and then two weeks apart on those.doses. I followed what my doc said
Then I went to 20 again then down to 15....didn't feel it was working...16 now. My brain cells hurt from this....
So should I go to 20?. Then wait how long for things to settle or know it's maybe not enough....see what I mean? Anyway that is what I am trying to know. My labs did go down after my first month and 1/2 of treatment but then they returned to high levels. Anyway thank you so much for replying. I am grateful. Mickie
Replies to "Thank you John. When I am reminded of the specific symptoms of PMR it does fit...."
@njtodctode, I concur with John’s direction above. I have degenerative disc disease along with PMR and honestly didn’t believe my PMR diagnosis. I have significant back spasms and believed that it was more of a reflection of DDD than PMR but my rheumatologist gave me some printed research that indicated that many people have back spasms as part of PMR. I have also been informed that some people are just more aware of the spasms and can distinguish them from other pain. I think that is likely true for you and I. I had initial relief at 15mg but pain returned and I had to bump up to 20 mg and ultimately to 25mg to get relief. After 2 weeks at that level I was able to taper down to 22.5 and now at 20 mg. I taper to 17.5 mg tomorrow. Prayers for relief, peace, and direction for you!
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Hi Mickie @njtodctode, It does sound like you may be tapering down too fast. My rheumatologist always told me everyone is different and you have to listen to your body and taper slowly. He also gave me scripts for the 5, 2.5 and 1 mg tablets which made tapering by smaller amounts easier. I only went down by 5 mg at the first taper and then my pain level was around a 1 or 2 when I first got up in the morning before taking the prednisone dose for the day. I only tapered down if my pain level was a 1 or 2 which is subjective for each of us and why I think it helps to keep a daily log so you can compare it day to day.
Some members have mentioned splitting the days dosage into a morning and afternoon/evening which I never did but think it could be helpful depending on your pain level during the day and night.
If 20 mg gave you fast relief and 15 not so much, I might try splitting the difference to see if that brings you relief at 17.5. I would definitely keep a daily log so that you can compare which can be difficult if you are constantly in pain. Slow wins the game when you are tapering down on prednisone.
Psst...I might also have a chat with my doctor on a tapering plan based on how I feel and not a timeline to get off of prednisone. The whole reason for prednisone is to address the pain. Hoping you have a pain free day!