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

Welcome @bobrizzo, It sounds like you are not having any trouble managing your PMR with the prednisone which is great to hear. The PMR Support Group here on Connect has many other discussions that you might also find helpful or interesting if you are looking for more information - https://connect.mayoclinic.org/group/polymyalgia-rheumatica-pmr/.

How long ago were you diagnosed with PMR?

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!

@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.

@dadcue I started on actemra about 2 months after starting on prednisone. my rheumatologist is very high on actemra versus prednisone. Being that I was basically on both of them simultaneously and then had some mini flares once I was off prednisone for about a month and a half to two months, I feel that the actemra works very well at cutting down the amount of prednisone you have to take fairly early in your treatment of PMR, but I think, from my own experience, that you still may need the combo, but with prednisone in a much lower dose for a while. Until I am off of everything but the actemra for a period of time, I won’t be able to make a solid judgment. I do think that the infusions of actemra with a low dose of prednisone, in my own experience of being treated for 11 months, and hopefully on actema only, very shortly, seems to be the way to go. I’ll keep you posted!!! until I had discovered this “Mayo Clinic Connect”, I felt as though I was living in the “ Twilight Zone” with my vague and mysterious symptoms.

@johnbishop I was diagnosed about 5 months ago after many years of all sorts of pain that I treated with OTC drugs, numerous CBD products, physical therapy, massage and acupuncture. It’s been an ongoing battle for a few years. After a MRI and numerous other drugs my “new” primary care Dr a PRM did bloodwork and suggested a round of prednisone which immediately changed the picture - now slowly getting off prendisone w/ the help of Kevzara - so far so good had third shot last week
Tapering 2 mg/ wk now at 10mg from 12mg - still some unexplained pain in shoulders and legs ….

@bobrizzo - Wondering if you might be tapering too fast if you are having more unexplained pain. You might want to checkout another discussion started by @dadcue - How to Slowly and Safely Taper Off Prednisone but ... no set rules.: https://connect.mayoclinic.org/discussion/how-to-slowly-and-safely-taper-off-prednisone-but-no-set-rules/.

Do you keep a daily journal with your level of pain and dosage of prednisone?

@johnbishop prednisone is really having a negative effect on my Blood sugar so we’re trying to reduce is as quickly and safely as possible. I’d rather a little pain than have ongoing high ( occasionally) 300+ blood sugar- I have type 2 Diabates and take 2000 metformin/ day

@bobrizzo, Another member @alanbruce had the same problem with prednisone and started a discussion that you might find helpful. I think @dadcue also had the same problem and may have some suggestions.

-- The impact of Prednisone on A1C: https://connect.mayoclinic.org/discussion/the-impact-of-prednisone-on-ac/

@johnbishop yes

@johnbishop thanks !!! I’ll check them out!