Prednisone for over a year along with Kevzara for last 5 months
Hello,
I have had Rheumatoid Arthritis since I was 28 and I am now 54. I was diagnosed with PMR over a year ago and have been on Prednisone since that time. I started Kevzara about 5 months ago and I am down from 15 mg of Prednisone to 8 mg. I don't feel like I am getting any better. I eat healthy and I am still working out when I can. The prednisone does help until about 6 pm and then the pain in my shoulders, neck and chest comes back. I find it hard to get comfortable at night because I hurt. I have been taking a Naproxen around 7 pm and along with a muscle relaxer. I have tried acupuncture and was sent to physical therapy. I have been on Plaquenil, Methotrexate, Humira, Enbrel, and now Kevzara. I really want to get off the prednisone, but I don't think I can function without it. I am thinking about going to a Integrative & Functional medicine doctor and I am wondering if anyone has done this and has it helped?
Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.
Thank you.
Here were the tests ran by my Rhumy. Medicare covered the costs. I would have to try and go back 2 years to see what the results were. I dont remember. He also ran a PET scan which was also covered.
1.. CBC with DIFF
2. ESR
3. CRP, HS-CRP **
4. HBsAG
5. Interferon Gamma, Serum
6. Hep -B
7. Anti-Chromatin Ab, IgC (RDL)
8. CCP Antibodies IgG/IgA
9. 14-3-3 eta Protein
10. Antiphospholipid Antibody APS, APLS
11.RF test
12. ANA - antinuclear antibody
13. Aldolase - With CK, ALT, AST
14. Interleukin 2 and 6
My rheummy, who seems very sharp, is pretty set in her idea that PMR only last about 3 years. I've had most of what you have had except the IL 2 and 6. When I first came to her, I was just coming off steroids and my system was pretty inactive. I suspect that is no longer true. I think she and I are going to clash about this. Should be interesting.
I just did a quick google search of "pmr and IL-6" some stuff appears. But plenty of data. Here is an NIH paper.
https://pubmed.ncbi.nlm.nih.gov/2124160/
I’ve been on Kevzara 8 months now and was able to get off prednisone after 4 months. It is keeping my CRP and ESR normal. I still have PMR pain when the shot wears off at about 10 days and it takes a few days to kick in. No side effects from the kevzara, other than infection in my arm once. Doc says we hope to get flares in to remission within about a year.
I need to ask how long you took prednisone before Kevzara was started.
Research studies usually looked at "newly diagnosed" patients with PMR. Kevzara allowed a significant number of patients to have a decrease of PMR symptoms within a few months after starting Kevzara. For you to get off Prednisone in 4 months is very good. It takes about a year of treatment with Kevzara for patients to have a "sustained remission."
I wonder what experience people have with Kevzara when they were diagnosed with PMR a long time ago and have been on prednisone for a long time. Were you newly diagnosed or did you have PMR for a long time??
I have taken Actemra for more than 5 years. It took me two years to be prednisone free. I had relapses when Actemra was stopped. I had PMR for more than 12 years. Except for about 6 months at the start, I was on prednisone the entire time.
My rheumatologist attributed my relapses to how long PMR was active. He said the immune system has the ability to form a long term memory for things it attacks. This is detrimental in autoimmune disorders because my immune system was attacking me --- my tissues won't ever go away so my immune system isn't likely to forget about them anytime soon. For this reason, my rheumatologist doesn't have a plan to stop Actemra anytime soon. I still do a monthly infusions of Actemra. I don't have any serious side effects from Atemra. My PMR symptoms are well controlled but I wouldn't say I'm completely pain free. I'm finally off prednisone and my quality of life is much improved.
I was on Prednisone for over a year prior. I had a lot of side effects from the Pred. (20 mg) and did not tolerate getting off of it, my lab results shot right up. So my doc started to taper before I started the Kevzara. I was finally diagnosed with PMR in May 2023 after a vision issue.