How to address PMR pain while decreasing prednisone

Hi John I sleep on my side but use a small pillow .Almost like a rolled up towel

I was just diagnosed wiht PMR after a month of feeling just terrible. My ana levels are elevated and sed rate. It stared with strep throat and I thought I had the flu after that. My doctor is starting me on a low dose of prednisone (5 m) because I had a bad reaction when I took it years ago for a bad case of poison ivy. I have SVT and it sent my heart out of sync. I'm afraid to take it but from what I've been reading, it really seems to make a difference. I will probably begin tomorrow. The nights are the worst for me. After last night, I told myself the low dose might be worth a try. I was also told I could take Tylenol and that does help me during the day. Thanks for sharing your story. It helps to know I'm not alone in this. LB

Hi @mymolly57, welcome to Mayo Connect. We are glad you found us. May I ask how high of a dose of prednisone triggered your supraventricular tachycardia (SVT) event when treated for poison ivy? It's good that you discussed it with your doctor and the doctor is starting on a low dose of prednisone. Mayo Clinic has some good information on polymyalgia rheumatica (PMR) on their website below. The page also has a section on Lifestyle and home remedies that may be helpful:
https://www.mayoclinic.org/diseases-conditions/polymyalgia-rheumatica/diagnosis-treatment/drc-20376545
John

I was on prednisone for ten months after being diagnosed with PMR. After being weened off of the prednisone, I felt ok for a short time. My symptoms have returned with some added problems. Pain around "the pelvic girdle" is debilitating. I am unable to walk and the fatigue is limiting my normal life. The prednisone may have been a magic medicine but I am more concerned with the dangerous side effects such as bone weakening and skin thinning. I do take pain medication when I must but life as I knew it has completely changed.

So sorry to hear this ,it's a steroid and hard on your kidneys ,liver I'm sorry Dr had you on that long?

Unfortunately, I think being on prednisone for at least a year is pretty standard (if you count the months it takes to wean off). I have an identical situation. I was a healthy 70 yr. old. Never sick and very active my entire life. All of a sudden, my hip flexors started hurting and I couldn't lift my arms to do arm circles. I was diagnosed with PMR the end of 2016. My RA put me on 15 mg of prednisone. I told her how I feared being on prednisone. She replied, "You don't have to go on prednisone, but promise me that if you start losing sight in one of your eyes, you will come to see me." She went on to tell me about the chances of getting GCA (giant cell arteritis). To me, there really wasn't a choice and, from everything I read, if you want any kind of your life back, prednisone is the only thing that will work ! And it DID work like a miracle !!! I like my RA. She understands where I come from. She "weaned" me off gradually from the steroid (took a year) and after a while, the pain has returned. She told me that if you try to wean off too fast, the PMR may most probably return. Gradually, I have developed pain in my quads, hamstrings, and even knee "pits". I was practically crawling to the bathroom. I went in for my follow up and she said my inflammation markers were up (Sed rate 66; CRP 18.4). She said it was unusual for the PMR to affect my knee area. But, my entire hip girdle is affected like you. She has raised me back up to 5 mg (I was down to 1). She said that was low dose and less likely to have side effects. Truthfully, I don't know if that's going to do the trick. I'm a swimmer and love yoga - hard for me to do either now. She wants to see me in 3 weeks and if I'm no better, I know she's going to want to raise me back up to 15. I'm to the point I'm going to seek some alternative therapy. I so want my life back. A friend keeps telling me ... you have to keep those negative thoughts from reaching your brain. She said that really makes a difference. And, I'm confused reading & talking to people about all the anti-inflammatory diets. Do they even work? I want to be able to walk again, not hobble ... without the help of a dangerous drug. P.S. Speaking of bone weakening ... the next thing she wants me on is a bone strengthening med ... you know the drill, take one med for your condition and one med to counteract the side-effects of the first med. And so it goes.

I, too will be seeking alternative treatments. My first venture into this is an appointment with a nutritionist who is recommended by my primary physician. My primary and I are in agreement as to the avoidance of taking prednisone. In reading another post, I see that one person has been successful with physical exercise. I wish I could do that but because of the pain it augments it is impossible. After working with a physical therapist for six months, it appears that this was not helpful. On days I was feeling a bit better, the therapy had good results but on the days I could hardly move, the therapy was more painful and had no good result. I do find that therapeutic massage by an accredited masseuse is helpful but the relief is short-lived. I do it anyway every other week and look forward to it.
The last two weeks have been especially challenging as I have developed a rash all over my body. Much of it itches terribly. Saw the dermatologist, gynecologist, rheumatologist and my primary. All had different takes on the issue. None have a clue as to whether it is associated with the PMR. Since dealing with the rash, the PMR pains have gotten much worse. The gynecologist diagnosed a UTI which a few days later, after going on strong antibiotic, was proven negative by culture.
I try to keep negative thoughts at bay but it is very difficult. Looking for a pre eminent physician anywhere who will take me on.
Good luck to all of us.

I was on prednisone for 3 years for the first episode of my PMR. It went into remission for 6 years and I've currently been on it for a year and half but will be at 1 mg hopefully next week and off of it in another month - all things being equal. I do take CoQ10 (Qunol), collagen and calcium to hopefully help with the thin bones,etc.. My doctor suggested I add 1200 mg calcium to help with the osteopenia. I do believe exercise is key but I also think diet play a huge part in dealing with a lot of the autoimmune diseases. I was convinced when I read Dr. Terry Wahls story on how she got rid of most of the debilitating symptoms of MS using nutrition at the cellular level. It's worth a quick read if you don't know who she is: https://terrywahls.com/about/about-terry-wahls/

It has helped me control the weight gain this second time around with the PMR.

Hoping for a pain free weekend (and more!) for all my PMR friends.

John

Seems like we have a LOT in common. When I first came down with my initial pain, I tried to do physical therapy for my shoulders (prior to going on prednisone) but it hurt too much - no range of motion ! Ended up getting a cortisone shot in one shoulder and that helped tremendously (also a steroid). Then, I went back to physical therapy for about 6 weeks and felt better. But, I don't feel that the physical therapy was the reason - it was the shot in my shoulder ! I did get the rash recently, on my lower back. It was short lived but comes back from time to time. Same thing to with massage therapy - it helps until I get home and my pain returns. I, too, am thinking of talking to a nutritionist. I can't slog through this diet without advice from someone. I want to keep myself healthy and not miss out on any nutrients that are essential. In the meantime, I'm on 5 mg of prednisone ... hopefully, this "maintenance" will allow me to swim, etc. I seem to improve with activity. Then, each morning the routine starts all over again.

I would like to know how many others have had a mysterious rash.