I am 1 mg of prednisone currently. I know it is not a high enough dose, but I can manage. I say it's not a high enough dose bc I still have a lot of pain in my neck and shoulders, especially in the mornings getting out of bed. I go to work at 5:30 am everyday, so I take 1/2 a tramadol at 5am hoping it will help a bit, then I take my 1 mg of tramadol.
I am walking about 20 minutes a day and trying to do a few stretches. I go see the rheumatoid Dr tomorrow and I will see what my inflammation levels are. I had lab drawn yesterday. Some days I feels really good and think, oh my, I'm healed and then the next day comes, and I'm like not!
I do have some fatty pockets around my lower neck and my research tells me it is from the prednisone. Each time I have tried to stop the 1 mg of prednisone, I can hardly move or walk and the bottoms of my feet feel a lot of pain.
What a mystery this illness is!

Hi @barbararene, I can relate to your morning pain and stiffness. I get up at 5 every morning and spend about 30 minutes on a recumbent exercise bike so I can work out the stiffness in my legs. I need to do some more stretching exercises also but haven't quite got there yet. I'm currently on 3-1/2 mg of prednisone and trying to taper 1 mg a month. Exercise is an important part of keeping it from getting worse. You just don't want to over do it.

The weather has a lot to do with the pain and stiffness this time of year for me. Does the weather affect your pain and stiffness?

John

Hi @bartbararene well being on 1 mg/day is not bad at all I am waiting for the day that I can drop to that dose. I came down with PMR back in March of this year. Started with 20 mg/day now I am down to 10/day. I take 5 mg in the AM & 5 mg in the PM. I am doing real good with that dose I do still feel the discomfort but I function very well & do not let the discomfort bother me. I have tried to drop my dose but the pain accelerates so I am sticking to 10 mg/day for now. Yes as John B said exercise is very important especially in the morning it helps you to get going. About the only thing I still cannot do is playing golf because of the shoulder & wrist discomfort other then that I still am able to do my gym work. Hang in there they say that there is light at the end of the PMR tunnel.

I have just been diagnosed with PMR, well sort of. The blood test for inflammation came back normal, although I have every symptom. It started about 5 months ago, when I started feeling really stiff and sore especially in the thighs and buttock area. It soon spread to my upper arms and neck. I began feeling such fatigue that I needed a nap in the afternoon. I have to admit to feeling frightened by these symtoms because I have always been extremely active physically. The Dr. said that we were going to treat it as PMR because it was all the classic symptoms, and so started me off on 20mg of prednisone. Within 3 days the relief was tremendous, and my good spirit was totally returning. I plan to start reducing in a week or so. Buy, last night I started getting pain in my hip, and this morning it is still there and quite bad. My question is: has anyone else had this? where all of a sudden a pain will resurface even while on 20 mg of prednisone? Thank you so much for any input

Hi Sally @sallygosse, welcome to Mayo Connect. I am currently in my second episode of PMR. Both times I was started at 20 mg prednisone and the symptoms were better almost immediately after taking prednisone but they did come back if I tried to taper off the drug too fast. It took me three years to get off prednisone the first time and the PMR went into remission for six years. I'm about a year and a half into episode two and I'm currently at 2 mg prednisone. The last time I went back and forth between 1 mg and 1/2 mg for over six months until the PMR went into remission.

It might be good to discuss how you are doing with your doctor and see if he still thinks it's PMR or if he thinks it would be good to see a rheumatologist.

Did your doctor give you a tapering schedule for the prednisone? Everyone is different and reacts different to tapering off of prednisone but a schedule gives you a starting point. I keep a daily log of the dosage and a few little ticks if my pain is worse than the day before. I try to tolerate a little pain when I reduce the dosage to see if it gets worse in a couple of days at the same dosage.

John

Thank you so much for your input John. It is so comforting to have someone knowledgeable to talk to about this. I had never heard of it until 3 weeks ago. I also didn't realize a rheumatologist would be the Dr. to speak to, as this isn't a joint issue, but muscle. But I will ask my Dr. on the next visit in 2 weeks. The tapering off she gave me seems quite radical after reading from other people. I was told to taper by 5mg each week, down to 5 mg and see how I felt. I could move back up 5 mg if the pain returned. Im starting to feel as though this was not the best advise. Have you ever experienced pain return while still on the higher dose of 20 mg. ? it is not unbearable, like before, but definitely quite uncomfortable.
Sally

Hi Sally @sallygosse, the good news is that there are a lot of us here on Connect with PMR. The bad news I don't have to tell you ☺ It's something I wouldn't wish on anyone. I have no medical training or background so all I can do is share my experience with prednisone and my episodes of PMR. From talking with other members here on Connect, you can draw some similarities and some differences. I think that's because each of us is a little different and may have different threshold levels for pain. I had my doctor prescribe 2.5 mg tablets of prednisone because 5 mg was too big of a jump for me and the pain came back. I have been tapering my dosage every 4 weeks. When I reached 5 mg for four weeks I dropped to 4 mg, then 3 mg and now at 2 mg. There have been several times where I have had to go back to the previous dosage for a few days or a week until I was able to reduce to the next step. It's really different for each of us but I would not be afraid to discuss a plan with your doctor that works for you.

It's really important to keep up with some kind of activity even if it's not a lot. Whatever you can do helps.

P.S. - I don't like quite uncomfortable either!

John

Sally, I have had PMR since July 2017. Started on Prednisone 20 mg right away and reduced each month by 2.5 until I got to 10mg and started reducing by 1mg per month. This is a slow taper and recommended for me by Mayo.

How is this working for you @alanbruce ? did you have any pair reoccur?

so far all is well. I try to get lots of exercise, have my blood checked regularly and go to my rheumatologist at least quartely. i also go to a dietician to help watch my weight and blood sugar.