Tapering off of Prednisone

Typical start dose is 15-20 mgs. for PMR. Much higher for GCA. Your objective should be to reduce to the point where you feel good. We all want to get to zero, but the disease lets us know how fast and far we can go. Speaking of fast, at this point, slow is better...dropping by no more than 10% and then only when you are stabilized in terms of pain. If I were you I'd stay at 10 if the pain isn't too bad. If it's bad, you may need to go to 12.5 and see how you do. If that's better, stay awhile and then reduce very slowly. By the way, I'm sure most of us can relate. I felt great at 15 mgs., but struggled below 10. I'm back up to 10 now and will try again reducing to 9.5. Slow and easy.

I don't really understand the dangers of not using prednisone or not enough prednisone vs just NOT using it? I've read that Giant Cell Arteritis has a risk of blindness if prednisone isn't started promptly, and I've read that there is a chance that other blood vessels, the aorta and its branches, can become inflamed. But what about PMR? Is there a risk of blood vessel damage with PMR if you don't use artificial means to reduce the inflamation? My Dr told me to stop my reductions, and to increase my dosage of prednisone slightly when labs showed my ESR (sedimentation rate) climbed back up to 42, after it had dropped to 22 after 4 weeks on prednisone . I wasn't struggling with pain from the reduced dosage so it was the lab test that was the deciding factor I guess? Does anyone else have labs taken to determine when to cut back?

@2heal - It can be scary to read about symptoms, treatments, and possibilities. These are questions you should really discuss with your doctor or better yet a rheumatologist who is familiar with PMR and Giant Cell Arteritis. Along with the blood tests my doctor and rheumatologist always asked if had any headaches, tenderness in the temples, changes in vision, jaw pain, or fever which are symptoms of GCA. More information here: https://www.vasculitisfoundation.org/education/forms/polymyalgia-rheumatica/

I only had the ESR and CRP labs done when I had my initial diagnosis of PMR the first time in 2007 and once a year until I was able to taper off of prednisone in 2010. Then my new primary care doctor ordered the ESR and CRP tests for my yearly exam. My PMR came back in 2016 and was active for a year and half. Here's some information on what the test results mean - Erythrocyte Sedimentation Rate (ESR): https://labtestsonline.org/tests/erythrocyte-sedimentation-rate-esr

Can you ask your doctor what does the elevated ESR mean if you don't have any pain or your pain is really low? and more importantly, why should I not be trying to taper off of prednisone?

Thank you for taking the time to respond to my questions, I appreciate your help and advice. Slow and easy seems to be the right way.

I'm new to the group. I have several questions about medication

I was diagnosed about 5 yrs. ago with PMR/and possible GCA. I've taken prednisone for all of that time along with Actemra for a couple of years. I'm 84 yrs. old, and tired of this process. I'm now @8mg. pred, and having difficulty tapering any lower. I'm still very active but want to get off of these meds. Please offer suggestions. I eat healthy and exercise regularly except with pain prohibits the exercise.

Hello @lizzier, Welcome to Connect. You will notice that we have moved your discussion into an existing discussion Tapering off of Prednisone where you can meet @kmeikle1, @maddman, @2heal and others discussing tapering off of prednisone.

Has your doctor suggested any alternatives like tocilizumab (TCZ) or methotrexate (glucocorticoid-sparing agents)?

More information here -- Treatment of giant cell arteritis: https://www.uptodate.com/contents/treatment-of-giant-cell-arteritis

Welcome to the group! I too am tapering after a severe bout of PMR that started in January after I received the Pfizer vaccine for Covid-19. I have been following my doctor's schedule of reducing the drug by 2.5 mgs. every two weeks and am down to 10 mgs currently. Next week I will go down to 7.5 mgs. So far, I have continued to improve even though I am cutting back. The doctor advised me that it would take at least three months for me to get completely off of the prednisone. I hope you are able to find some solutions for controlling your pain while you taper.

Your taper seems to be going well. That's about normal. When I get to 7 I start to crash, so I'm back up to 8 mg again. It's tedious, and I'm really tired of it. I'd give anything to get off of the red, but I just can't seem to get there. I also do an injection on Friday of Actemra, and that was supposed to help, but so far it isn't happening. This has been a five year journey. It's great that you are having success with the taper. I'm really glad d for you.

I had the Pfizer also without any negative results. but then who really know? It could have been what sabotaged my last taper.