What steroid dosage did you start on? Did you find the right dosage?

A good idea to suggest a baseline Dexascan when you are committed to long term steroids. Take 2000 units of Vitamin D daily and stay as active as your comfort allows.
Doctors should prescribe walking or at least chair and wall
exercises. Stretching, meditation and balance exercises are a good idea when we are retirement age. Consider your diet and stress levels as other components of symptom control.

I do these things however, sone years ago a doctor wanted to do a bone scan but it wasn't covered under Medicare. I'll ask about that when I see this doctor on the 11th.

I started at 10, suggested for one week, then to 5mgs. However, after 4 days I got an eye infection and attributed it to the prednisone impacting my immune system and called the doctor. He reduced me to 5 mgs then, I think I messed up and should have stayed on 10 mgs longer. Was on 5 for a while, months probably. Then I started tapering and got to 1 & 1/2 mgs. A stomach virus caused a flair and back to 5. Now I am on 3mgs. I think I am the problem and I never stayed on 10 mgs long enough. I am so concerned about diabetes and bone loss that I can't stand to take high doses. Help!!

I know that it’s scary, and I worry about side effects to medication too, but I try and remind myself that risks of the inflammation and impact on quality of life from untreated and under-treated PMR are as bad or worse than the risks of taking a low to moderate dose of prednisone long term.

There are a lot of completely valid warnings about prednisone, I think to prevent people from over-using it because it can resolve so many symptoms of so many things and quickly. But it is the indicated treatment for PMR; if you’re diagnosed with PMR you’re taking it because you need it.

There are ways to manage the potential risks of bone loss and impact on blood sugar from prednisone for PMR, whereas there are very few alternatives to prednisone for PMR. And untreated PMR, we know can cause severe pain and fatigue (which if not treated well can lead to chronic pain even after the condition has resolved), there’s the risk of GCA which can increase risk of stroke and lead to blindness… And having an inflammatory arthritis that’s not treated well can actually cause eye inflammation (uevitis), which is a symptom of GCA.

I try to remind myself those things are scarier to me than the risk of possible preventable bone loss and elevated blood sugar.

10 mg or less is considered a low dose, and it’s great that you made it into single digits. It can get harder and you might have to go back and forth for a while and find the lowest dose you need to manage the inflammation. Per my father’s dietician, 10 mg or less of prednisone if he can ultimately get to that low of a dose will not have much of a concerning effect on his nutrition and blood sugar, but everyone has different risk factors.

If your doctor or rheumatologist is experienced with PMR, are you able to talk to them about your concerns and your symptoms for help adjusting your dose?

With PMR (at least from my family’s experience), we have to defer to the symptoms as the guide to the taper, even if we want to go more quickly, and as frustrating as that is. i.e. If my dad has a prolonged flare, we have to pause the taper and sometimes go back up again until he’s back at his baseline pain before trying to reduce again, and sometimes more slowly.

Wishing you all the best. I know it’s tough.

Thank you for this excellent reply and advise. You are right, PMR untreated can be very dangerous and GCA even worse. So thankful I am at these lower doses. Thanks for helping me keep perspective!

Hi @johnbishop, Thanks so much for sharing your story with me. I have to say I had mixed feelings of your first experience with PMR taking 3 and half years for a complete remission of your PMR. It just seemed like a life time of tapering down. Your second time experience with PMR of 1 and a half years seemed to be the experience I see with many people that are on this forum. Having only been on prednisone for only 3 and a half months, I realize I am chomping on the bit and want this to be done now. I understand this process of tapering down is unique to each of us. I am currently easing into a life style change of no sugar, eating healthier, and exercising.
I do keep a journal or daily log of the pain level and my dose of prednisone for the day. I then share my journal data with my rheumatologist. After moving from 15mg to 9mg in 3 months, I felt OK dealing with a day to day pain level of a 2 or 3. Upon moving from 9mg to 8mg after 2 days on 8mg, I then had flare ups of a pain level of 8 out of 10, reminding me why I was on steroids. I do not want to go back to those days of pain, so I am staying on 9mg for the time being. I like your train of thought of increasing dose to half of previous taper.
God bless you for helping people like me and others starting this journey though PMR. It seems you have been through a lot in your journey.
Thanks again for sharing your experience and knowledge.

Thanks @bruce1951vet, it's great to hear you are working with your rheumatologist too. It certainly helped me that my rheumatologist was the same way and got me started with keeping a daily log and changing my lifestyle to help manage the PMR. We are both fortunate to have Connect and a vast number of folks to share our experiences with and learn from each other. Hoping your PMR journey is a short one and you get back to normal.

I don't think normal is coming back for me. I had started with 15mg of Prednisone with less pain in the morning and somewhat more flexibility earlier - about what I'd feel after being up a half hour without Prednisone. Long weekend, so it was a week before I could reach the doctor. She said to up to 25mg. Two days later, and it's also a less pain situation but so far not significantly; morning I can get fully dressed earlier, afternoons are noticeably better when I have maximum flexibility and minimum discomfort. Don't get me wrong, I think less pain is great. Normal, however, it isn't.
Yesterday when I saw the doctor she gave me instructions about tapering off *if things are going well* - two weeks at 25mg, then two weeks at 22.5, etc. She said not to expect complete pain relief, which was good to know. I'm a 79-year-old and have been in good health other than extreme risk osteoporosis (Alondronate for a dozen years + instructions not to fall). So... if there isn't complete pain relief, then when do you start tapering? Is this a situation of finding The New Normal or The New As Good As It's Going To Get? I've been referred to a rheumatologist, but that is likely to be well in the future.

I'm 15 months into my first flare and was started on 40 mg. and tapered to 10 mg. after the first three months. Worked my way down to 1 mg. a month ago and still have pain and stiffness but no worse than at the higher doses.

Thanks @johnbishop for your work with Connect as a volunteer. You are correct it has been a blessing having a vast amount of people sharing there experiences. I look forward to a day returning to normal, whatever that is...