← Return to Buttock/tailbone pain, sitting or lying down - symptom of PMR?

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i’ve had a lot of Glute pain, a lot of hamstring pain, and major spasms in my calfs when I would lay down at night. Once I went on to prednisone all of those symptoms disappeared. I am now in the final week and a half of tapering off of Cymbalta, which was originally given to me for. “nerve” pain months before anyone ever even mentioned the word PMR to me. since I started on 20 mg of prednisone last February, I felt like a million bucks within 12 hours. I have, since that time, tapered off of prednisone while being put on Actemra. although the most severe symptoms, such as extreme pain, severe physical limitations, weight loss, fatigue, and a general overall feeling of being unwell have gone away, once I was off of prednisone for about five or six weeks in the summer I felt like I could use a prednisone boost along with my monthly infusions of actemra. I would explain to my rheumatologist that I felt I was having, for lack of a better description.. “mini flares” . these flares consisted of Achilles tendinitis in my left leg, which went on for about four months with some swelling in the tendon/calf area. When that subsided, I then had what felt like a pulled hamstring on my right side that eventually went down into my knee area. This also went on for months and although I had started on a very low dose, maybe 5 to 10 mg of prednisone. It didn’t help these issues. The final odd thing that happened to me was when I went out to take a very slow 10 minute bike ride on Thanksgiving morning just to loosen up my muscles and I felt/heard a pop in my calf, which turned out to be a tear in my calf muscle. All these things I’ve had going on for the past year and a half to two years didn’t exist before PMR I think my PMR symptoms started with a headache two years ago that would never go away and I was never concerned that it was a brain tumor, but it felt like it was coming from my neck or shoulder blade area. That was my first thing and then I just started getting stiffness all over my body, even though I was stretching for about 45 minutes a day. I am a very active person. I was 66 years old at the time and would generally exercise for an hour and a half a day and soon I was shuffling like someone who was 100 years old and it happened in a very short period of time right now I still have some issues with my right leg after the calf tear and I still have some tightness in my hamstring and a little swelling in my right knee after a very busy day. I am now starting 2 mg of prednisone tomorrow for two weeks and then 1 mg for two weeks. I’m still receiving monthly ACTEMRA infusions.. my very excellent rheumatologist does not like using prednisone if he doesn’t have to, so this low-dose prednisone. Is to help my issues while I have started hydroxychloroquine which he said takes about a month or so to build up in your body to help with inflammation. The goal is to get me off of prednisone completely and not have these mini flares. But I feel like I could write a book on this inflammatory disease because it shows up in a very sneaky way. Good luck to all while you’re on your journey to finding your way out of the murkiness of this confusing disease… I often read the comments that people send in and usually I do not respond because I feel like I could just go on for hours and I think it would become too confusing. But aside from these issues, I’m so much better than I was a year ago and I’m so grateful to my wonderful doctors!

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Replies to "i’ve had a lot of Glute pain, a lot of hamstring pain, and major spasms in..."

@mun68

Your comments are important. I'm always interested in people who have tried Actemra. Sometimes I feel like my treatment of PMR was confusing. I don't know how to be concise when I write about 12 years of Prednisone followed by 7 years of Actemra.

Simply put ... my 7 years of Actemra have been much better than my 12 years of Prednisone.