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@kmeikle1

I'm discouraged because it took a lot for me to get from 15 mgs to 7 mgs and now I went back up to 10. So you just kept working through to get lower on prednisone even with pain and discomfort? Thanks for sharing...it helps to know I'm not alone.

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Replies to "I'm discouraged because it took a lot for me to get from 15 mgs to 7..."

You are definitely not alone. I must admit I was complacent and happy to live in relative comfort at first with about 10 mg but then the Covid and with the affect of the prednisone on the immune system, and at same time finding out I had shot up into the pre diabetic state made me make a big effort and like you say, just keeping on working through now. Our local pool is opening up again so I am going back as I found aqua jogging is very good in getting those thigh muscles working, doing things I can't normally do. Hope things start to go better for you.

Kmeikle1, in reading this message chain one can see the vagaries of PMR. It is certainly possible to have tendinitis or muscle pain on one side, but that is usually caused by overuse. In fact, many people have such symptoms as it seems to be easier to injure tendons and muscles while on higher dosages of Prednisone and it takes longer to recover. Such pain in an indirect result of PMR however. Classic PMR pain is almost always bilateral although it doesn’t have to be equal. In other words, if one thigh hurts to 8/10, usually the other also hurts, but can be 1/10 or any other number. No pain on the other side would be rare for PMR, but remember everyone is different and there are exceptions for every rule. You do NOT want to try to work through PMR pain. Usually that makes things worse. Prednisone use is not fun, but it beats PMR pain, so you should take the smallest dose that controls the pain. Tapering is really individualized and it can take years (some people are on it for life). Some doctors keep patients on a low dose permanently to avoid flares, so they don’t yo-yo. We have a tendency to rush the taper too much sometimes, and the very slow taper seems to provide more long term success to patients.

It has been quite some time since I have back to the group My initial diagnosis was a self diagnosis because I could not get in to see my GP A second DR did not ask the right questions but gave me Tylenol with codeine for the extreme pain I was having I have several severe issues , including serious degenerative disc disease, serious muscle and joint pain from Letrozole as a follow up to breast cancer as well as two hip replacement from osteoarthritis So when I started having very severe pain in my shoulders, muscles and down my arm I knew something had changed I am an OLD pharmacist and still read a lot of medical research papers
So when I looked at the PMR , I realized I checked every box and particularly my Scandinavian heritage on both sides of my family I managed to get a C Reactive Protein Blood test and it showed high rate of inflammation My GP saw it and immediately agreed with my self diagnosis and started me on 30 mg per day
I finally got in the see my rheumatologist, who wanted me to taper at 5mg per day until I got to 20 then 2.5 until 10 I had discovered a split dose worked best for me , but even then at 10 I had a flare My rheumatologist wanted me to go back to 13 for a month of and then to 9 That did not work , so I put myself at 15 and that helps lot So I have now tried a new method of tapering which so far is working very well Still using a split dose, I developed a schedule which I read about on the British National health site similar to this site

I took the initial 15 (10-5) for 5 days , then 9 and 5 one day , back to 10-5 , then down to 9 and 5 for 3 days, then then , 9 and 4 for 1 day , back to 9,and 5 for 2 days etc
I am now at 7 and 5 and will repeat going back and forth slowly until it I get to 9
It is working very well each time The National Health site says that this method appears to work best for some people When I get to 9 , I will stay at my higher dose days A little longer , before reducing EacH time you get closer to 7 you stay 4 or 5 days longer than you do above 10
It is strange to me that we all experience PMR so differently but it is important to remember My rheumatologist tells me it important that you do not try to tough it out The goal is to take the least amount that allows your pain to be controlled I also read that some a Rheumatologists are now leaving patients on up to 2 mg per day for life to help reduce the risk of recurrence if the PMR