Newly diagnosed still having pain after three days of prednisone

Posted by seasider @seasider, 2 days ago

Hello, I was first diagnosed by my Doctor 5 weeks ago (I’m in true UK) and started on 15mg of prednisone. The doctor said I should stop taking it after a week as I still had pain. I saw a private rheumatologist and he re-started the prednisone at 30mg prednisone 3 days ago, I have definite improvement but I still feel pain in my shoulders and stiffness in knees and hips. I heard of others miraculously having no symptoms after a couple of days. Can I have some advice as to what to expect please?

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30 mg is a pretty high dose for you to still have pain. I was started on 20 mg and my pain subsided after my first dose. Did you have blood work done showing inflammation ? It’s my understanding that the litmus test for PMR is that prednisone is like a miracle drug. It normally works quickly on the pain if it’s PMR. If not, you may have something else.

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I started on 15 mg prednisone because my rheumatologist wasn't yet sure of the diagnosis but knew I had an inflammatory condition. That dosage just took the edge off the pain. After being diagnosed he put me on 25 mg prednisone. For context, I'm 6'3" and 245#. I'm on day 2 and most of my pain and stiffness are gone. We're all different in size, shape and how well prednisone works. Another thing to consider is switching to prednisolone because maybe your body is not converting the prednisone efficiently.

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I am 5’3” when I originally started on 15mg there wasn’t much difference. I did had bloods done but I had been taking ibuprofen so Rheumatoligist needed me to do it again after no ibuprofen for 5 days, the inflammation markers were higher 50 and 48. Did anyone take longer for the pain to go than 5 days?. I can now turn in bed and less difficulty getting dressed, just not the miracle cure. I am supposed to go down to 25mg after 1 week, then 20 the next week, then 15 and then bloods and see him again

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I started on 15 mg which worked for 2 days but then became less effective. I increased to 25mg and now on day 3 it's less effective again. I go back to the rheumatologist on April 1st.

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Hi, whilst I’m sorry you are not having fast improvement either kjoed53 . I’m glad I’m not alone. I also take Carbimazole for Graves’ disease and noted on NICE website that the dose of prednisone may need to be adjusted in that case. I will persevere and ask to see rheumatologist earlier if necessary

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I'm starting to think that I also have something else going on besides PMR. I'm 73 years old so that doesn't help this as I have a lot of mileage and wear and tear.

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My best advice would be to continue on the higher dose of prednisone for a short time. I would expect your Rheumy would want to bring you down to or below 20mg/day rather quickly. Current school of thought is if you require more than 20mg per day to control pain then you may have PMR but very likely there is something else going on as well.
I would also suggest you keep a log of your pain when you wake, afternoon and bedtime to share with your doctor so you can both see the cycles. Include where the pain is along with time and pain level, plus anything that might aggravate or improve the pain. PMR has no test to confirm the Dx, so it is known as a default Dx. Be sure y'all are on the same page for care plan and in communication.

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Thanks jabrown0407 for the advice I am keeping a diary. I am probably doing too much to soon as well, so need to dial back a bit.

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I am 5'3" and 120 pounds and was given 10mg of prednisone. It took two or three weeks for my pain to be completely gone. I had asked the rheumy if I needed a higher dose, but he told me to be patient. He was right! After two or three weeks I shot past no pain and started to feel younger and stronger every week. It was great! But after a couple of months of that he had me start to taper and I got older and older until I am now 71, with my osteoarthritic pain, but not the PMR. It was Flowers for Algernon with body not mind.

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Not everyone responds to prednisone immediately. For some of us, it's not a higher dose that's needed, but a little patience. After a week on 15mg prednisone I was disappointed that I hadn't had full immediate relief as some people here have reported. I recall telling my doctor I'd had only 70% improvement. But after the second week (and splitting the dose to take 2mg of it later in the day), I was completely painfree.

It makes sense that the inflammation that causes the pain can take a little while to reduce. Prednisone is not a painkiller. The mystery to me is how some people get relief from it almost immediately. We're all different.

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