I was doing so well and here we go again.!! I have been reducing my pred very slowly since a year ago July. I had it down last week to 8 mg a day after being at each dose for a month. Then 3 days later I developed a severe pain in my right shoulder blade which lasted 24 hours then disappeared and then returned in the left shoulder blade. The pain over the past week has lessened but now both shoulder blades ache terribly, and have a burning sensation in them. I have been now at 10 pred a day for a week , after talking with my rheumy. He ordered more blood tests, I have them once a month, and in one week my PMR had risen from 0.8 to 2.6 .The USA rate is 0.-0.5 and my ESR rate had risen from 28 to 45. Yesterday morning I had the strangest sensation in my right shoulder blade like a severe attack of pins and needles. I have raised my red to 12 today to hopefully feel better. Has anyone had these kind of symptoms? I have GCA/PMR. I am taking a trip to England leaving San Francisco on the 28th OCT. and I want to be more like my old self by then. I may have been doing too much as I have been walking 5-8 miles a day, plus every other day lifting weights and other exercises. I hate this aching it is quite debilitating. I still work also and am 77. Any advice on this would be grateful appreciated. This site is wonderful. Thank you all.

9 Replies

  • It sounds as if there may be a muscle spasm problem as well as a flare of PMR. Do you have access to either a Bowen therapist or a therapeutic massage therapist/sports physio? That was the approach I used to manage similar back problems in the early days of PMR when I had no pred treatment. It kept me upright. You may have overdone the weights - something I could never have done with PMR in the past at least and certainly if you are having a flare then you should cut them back a bit. All that and still working would be a lot for a PMR patient at any age.

  • Delia, your blood measurements have shot up, so there must be a problem. It may be that you need a higher dose of pred to suppress the inflammation. It is often recommended to go up 5mg. Hopefully at 12mg things should sort themselves out though, ready for your trip to England.

  • Thank you for your responses. I also think it was brought on by the weights, and I stopped those a week ago especially since I had just reduced to 8 mg. I do not know of a Bowen therapist around me but I will make enquiries into that. Piglet I too was alarmed at the rise in the blood measurements, but my rheumy doesn't seem to be too concerned about those. I will have another test in two weeks to see how they are going then. I hope to be feeling better on 12 mg and if not will ask if this could all be something else. Thank you again.

  • Hi Delia. As piglette says hopefully being at 12 mg should sort things out for you. If ok, stay on that dose until after your trip to UK - the whole flight thing is stressful so dont add any more by trying to reduce before or during your trip. Not worth it!

    If you're not already doing so, suggest you try a slow reduction rather than overnight. And once you get to single figures try reducing by 0.5 mg. Remember the 'not more than 10% reduction' mantra.

  • Thank you Dorset Lady, I am really looking forward to my trip now, I had to cancel one in July due to a flareup and had been doing so well since then that this is a disappointment. I am sailing from New York, which takes a week, and then staying a month with relatives retuning on 3rd Dec. So a really nice long break. Your New Zealand trip has spurred me to do this. You are an inspiration to me. I took a test trip to Hawaii in July instead of my England trip and did very well. Half the distance of course from here. I was feeling so much better then though than now. I am sure I will be just fine. Have a lovely day.

  • Hi again Delia. What a lovely thing to say. I'm looking forward to another trip to NZ. But not for a while! Are you docking at Southamton or Liverpool?

  • Southampton , New Zealand is a place I have always wanted to visit. Much more so that Australia. Too bad it is so expensive to travel but I hope to do it before I am old and decrepid. !!

  • Hope you manage it. It's a gorgeous place. And very laid back. It's just such a blooming long way!! Trouble is

    I've got children and grandchildren there and here in UK I could do with DR WHO's Tardis!

  • That is difficult and disappointing to not see them often. However, even though my kids all live within 100 miles form me I seldom see them. I am extremely close to my grand-daughter who has just finished her schooling in Washington DC and will be returning to San Francisco in December with her husband and my new great grandson whom i haven't yet seen. So looking forward to that. They will live back in their old apartment in the building next to the hi-rise I am in. So cool.! I was born in Northamptonshire but will be spending a week in the Cotswolds with a cousin, and then the rest of the time with my 83 year old brother and his wife back in my old county. How it has changed though over the years. ! I have been here for almost 48 years now. My brother has a serious heart condition so I need to make this trip. It hopefully will be a rest for me too.

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