How to address PMR pain while decreasing prednisone

Hi Sue, I tried to excercise and push myself but found that it did not help. For me if I do not feel good in my body I rest and just do things that I can manage, I walk and try to do around 8000 to 10,000 steps a day walking briskly but not pushing it too far, that also depends on how I feel. I am fortunate in that I have a love for photography and that takes me to another place when I am in pain. Just walking around in nature and fresh air takes me out of the pmr world. I carry a backpack which weighs around 10kg and have found that while doing my photography and moving around I am limited in how long I can carry the pack for, when I stop and take the pack off my shoulders and arms are very sore, usually takes a couple of days to settle. I put on a fair amount of weight around 10kg and that did not make me feel better either, but I went on 800cal a day for two weeks and felt wonderful, very little carbs and lots of vegetables and protein, so feel that diet has a big role to play in this. Keep a food diary and log how you feel after each meal, you may pick up that something you are eating is flaring you up. PMR is a waiting game and you have to just give in to it and accept that it will take as long as it takes to get off the prednisone, like you I wanted to be off prednisone as soon as possible. I also am taking CBD syrup, the CBD oil is still not readily available in New Zealand and I have found that it helps me sleep at night. My advice is to be patient, once I was on 10mg from the 20 which took 3 months, I then reduced 1mg every 4 - 6 weeks because if I did it any sooner the pain would return, usually had a couple of days of pain once I lowered but settled after a few days and my body got used to the lower dose. Good luck Sue, I hope that this helps in some way. Kind Regards Linda

Hi Linda and Sue, This is my 3rd bout of PMR. During the first (age 57), I was exercising 5 days a week. My rheumatologist told me to do range of motion, not any heavy weights. I did walking and aerobics. This time, I am 73, still doing a senior aerobics class. I would like to walk more, but we have ice-covered sidewalks here so I am waiting for spring. I love the idea of photography or really any reason to be out in nature. I did have some problems with sciatica in January. Rheumatologist told me it was not related to PMR, but I find the PMR pain may cause you to use body differently. I got exercises from a friend who had seen a PT for sciatica, first rested with anti-inflammatory, then started those exercises, now that pain is gone. I get impatient with the PMR. The first bout, I was on prednisone 2 years, then in remission 12 years, then it came back 2 1/2 years ago. I went off prednisone in 10 months, then it came back. In retrospect, I think I came off prednisone too fast, so these last 2 are part of the same episode. I will be patient this time and come off very slowly. I am a retired dietitian/diabetes educator, so know about the increased appetite with prednisone and try to employ tactics to prevent gain. Food, however, tastes so good. I need to keep tasty temptations out of the house, do 3 meals at regular times, use the plate method, etc. I weigh daily. This is a frustrating condition, but livable.

What we did in the past is over, what we do in future has yet to come so today is our gift to do as we want!! So ENJOY today!!😀😊

For now I would stay on a dose that you feel good at AND do not change that dose and TAPER down slowly. You will feel better and worry less😉

Thank you for your response about tapering down slowly. Right now it seems like that is the only way for me to be able to function. I know I wouldn't be able to do the things I do if I were not on the prednisone. So I guess I should be grateful that I can take a medicine that can help. Thanks again!

Ive been on 2 mg/day prednisone for a couple of years although I dont really know if I need it anymore, it just seemed easier to continue.But I am thinking its time to finally taper off. anyone have a workable tapering schedule to go from 1 mg morning , 1 mg evening to complete elimination?

Hi @ayjaydee, Have you talked to your rheumatologist about tapering off? Each person is different but hopefully it won't be hard since you are already at 2 mg. 1 mg tablets can be split with a pill splitter fairly easy. If it were me, I might try to just take the 1 mg in the morning, skip the evening and see how you feel during the night. Then go for a couple days with just the 1 mg in the morning to see if the pain is too much. If it's OK, try going for 1/2 mg in the morning to see if the pain is OK. If the pain comes back, just try bumping it up by 1/2 mg. My first occurrence with PMR I was going back and forth between 1 mg and 1/2 mg until I was finally able to stop taking prednisone.

Thanks John. I'm a bit more conservative I guess as I was thinking 1 morning 1/2 evening for a week, then 1/2 and 1/2, then just 1, then just 1/2 and then zero

probably best to skip the just 1

@ayjaydee that sounds like a good plan.