Prednisone for over a year along with Kevzara for last 5 months

Actually Kevzara has few side effects and the ones which exist only affect a few people. They have to list anything anybody has had as far as side effects. Far less than methotrexate or prednisone. I know some people have a reaction at the injection site. I’ve been on it since December. It has been a game changer for me. My doc watches my liver function which was slightly elevated for two months, and I’ve been warned about watching out for infections but other than that..no problems and I am finally back down to 7mg of pred. My rheumatologists had about 10 patients with pmr and on Kevzara and none have had any problems.

I just wish to add my thoughts about the rule that it's always something.

In my case "if it wasn't one thing -- it was the other." In terms of PMR and spondlyloarthritis it was sometimes both.

In terms of not being able to taper off Prednisone. It was either a flare of something or adrenal insufficiency but probably "a combination of many things."

As for being on Prednisone daily for more than 12 years --- "it was one thing after another" in terms of the side effects.

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Colitis might be an extra-articular manifestation of spondyloarthritis. I wonder if it is possible to have both RA and spondyloarthritis?

"Arthritis can be a symptom of many types of diseases, but thorough differential diagnostics allows for an unambiguous diagnosis in most cases. However, it should be kept in mind that one diagnosis does not necessarily exclude another."
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4847317/
For the longest time, I confess to being guilty of thinking that "it could only be one thing."

I couldn't accept that all things are "likely multifactorial" as my primary care doctor said hundreds of times.

I just wish to add my thoughts about the rule that it's always something.

In my case "if it wasn't one thing -- it was the other." In terms of PMR and spondlyloarthritis it was sometimes both.

In terms of not being able to taper off Prednisone. It was either a flare of something or adrenal insufficiency but probably "a combination of many things."

As for being on Prednisone daily for more than 12 years --- "it was one thing after another" in terms of the side effects.

--------------------------------------------------------------------

Colitis might be an extra-articular manifestation of spondyloarthritis. I wonder if it is possible to have both RA and spondyloarthritis?

"Arthritis can be a symptom of many types of diseases, but thorough differential diagnostics allows for an unambiguous diagnosis in most cases. However, it should be kept in mind that one diagnosis does not necessarily exclude another."
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4847317/
For the longest time, I confess to being guilty of thinking that "it could only be one thing."

I couldn't accept that all things are "likely multifactorial" as my primary care doctor said hundreds of times.

Actually Kevzara has few side effects and the ones which exist only affect a few people. They have to list anything anybody has had as far as side effects. Far less than methotrexate or prednisone. I know some people have a reaction at the injection site. I’ve been on it since December. It has been a game changer for me. My doc watches my liver function which was slightly elevated for two months, and I’ve been warned about watching out for infections but other than that..no problems and I am finally back down to 7mg of pred. My rheumatologists had about 10 patients with pmr and on Kevzara and none have had any problems.

I'm not able to create a link but this is the URL for the report on the phase 3 clinical trial for Zevzara used for PMR. It was only 118 patients. If I read it correctly, 28% of the group taking Kevzara were off prednisone in a year versus 10% for the placebo. It discusses lab abnormalities and side effects, which appear to be low. I will start Kevzara this week. Copy/paste should get you to the paper.
https://www.nejm.org/doi/full/10.1056/NEJMoa2303452

You and @pb50 have RA in common.

I was diagnosed with seronegative inflammatory arthritis at the age of 32 and then PMR was added into my mix of autoimmune disorders when I was 52. I understand how it feels when you have multiple autoimmune disorders--to say it hurts everywhere is an understatement. Prednisone made me feel better but long term use of Prednisone made things worse.

I'm now doing a monthly infusion of Actemra (tocilizumab) which is a biologic similar to Kevzara. A biologic wasn't tried until I had PMR for 12 years when I was unable to taper off Prednisone. Even after Actemra was tried, it took another year to taper off Prednisone --- that was when I started to feel better.

Have you tried splitting your Prednisone dose? I did 2/3 of my dose in the morning and 1/3 of my dose in the evening. My starting dose of Prednisone after PMR was diagnosed was 40 mg daily. I wasn't able to get anywhere near 15 mg for 10 years!

I will soon be 70 years old but the battle isn't over. PMR might be in remission thanks to Actemra. I still hurt but not as much.

Hi,
So sorry you have been dealing with this for so long. I am so worried that I will never feel good again... I have tried to split the dose but it interferes with my sleep, and I already have sleeping issues. I was hoping the Kevzara would help me taper but after getting down to 8 mg for about 3 weeks I was in pain every day. I went back up to 15 mg and got rid of the pain and now I am at 12 mg and will probably stay here for a while. It is so frustrating for me because I have always been a healthy eater and I exercise and every day I just struggle and there is so much I want to do.

How did Humira and Enbrel work for you. I assume these TNF-inhibitors were for RA before you were diagnosed with PMR. Did Humira or Embrel ever work for you? Do you think your current symptoms are more like RA symptoms or more like PMR symptoms. It might be hard to know but describe your symptoms with as many details as you can.

Kevzara is an IL-6 inhibitor that is FDA approved for both PMR and RA but it might not work for you.

"If your RA symptoms haven’t improved as much as you’d hoped after three months of taking an IL-6 inhibitor, or the drug is causing problems, your doctor may recommend switching to a different biologic. If you continue to take a treatment for too long, even though it isn’t working, you could develop joint damage caused by uncontrolled inflammation."
https://www.everydayhealth.com/rheumatoid-arthritis/what-to-expect-when-starting-an-il-6-inhibitor-to-treat-rheumatoid-arthritis/#:~:text=IL%2D6%20inhibitors%20tend%20to,of%20months%20after%20starting%20treatment.&text=Replay-,IL%2D6%20inhibitors%20are%20a%20type%20of%20biologic%20%E2%80%94%20a%20drug,made%20from%20a%20living%20organism.

In 1998 I was diagnosed with Palindromic Rheumatism and I started taking Plaquinol. My rheumatologist said it could eventually turn into RA, which it did, but it took a while. I added Methotrexate few years later and other than fatigue and a flare once in a while I was doing great. I started to have some more issue an and my doctor put me on Humira and that lasted about 15 years or longer, I can’t even remember. When I had the sudden onset bilateral shoulder pain in February 2023 I started at the a sports medicine doctor, who sent me to my neurologist, who then sent me my neurologist. She thought I was too young for PMR and I had a slew of tests for other autoimmune diseases, including lupus. The only test that was out of range was my CCP antibody which was over 250 and should be under 20, but I was also on Humira and prednisone at the time. She took me off Humira and I started ENBREL for a short time but it didn’t help. She then started me on Kevzara because it’s approved for RA and PMR. I also have inherited high cholesterol and one of the side effects of Kevzara is increased cholesterol.