Prednisone to Kevzara back to Prednisone. ( Hope not )

@khof lets hope you wont need it. PMR can burn itself out. Mine was gone in 6 months. I know that is not the case with everyone. A WBC reaction to the biologics is not a side effect to some either. Kevzara is an immune blocker so the lowered WBC can be troublesome. You should be able to stop taking the Kevzara without the withdrawals so lets just hope the PMR does not return. Good luck.

@tuckerp
Where did you learn abt stopping Kevzara? I have been unable to find any info. Anxious to learn more. Thx

@tweetypie13

Tapering off or stopping Kevzara should be doctor guided because of the risk of a relapse.

Rheumatologists often apply strategies learned from similar medications, like Actemra (tocilizumab), or they simply follow the protocol of the clinical trials. There aren't any established protocols for stopping Kevzara. A doctor may opt for extending the time between Kevzara injections or simply stop the medication at the one-year mark if the patient is in remission.

I'm doing monthly Actemra infusions. My rheumatologist doesn't think it is wise for me to ever stop Actemra as long as Actemra continues to work. If I don't have any serious side effects from Actemra or have an infection, the plan is to continue doing my monthly Actemra infusions. Actemra was stopped a couple of times by my symptoms returned and my inflammation markers increased.

@dadcue
Thank you….as always

@tweetypie13 I started KEVZARA in December of 2024. Since then my wbc has been low. Hovering below and just above the normal range, and below what I had been at for years while on prednisone longer than I’ve had 7/8 infections requiring antibiotics, one being diverticulitis. So my rheumatologist stopped my KEVZARA and I’m starting back on 5mg prednisone. Hopefully it can keep the inflammation under control and no flare.

@grumpa

For the time we need both Prednisone and a biologic like Kevzara we have a higher risk of infections. Both Prednisone and biologics suppress the immune system. I was prone to infections when I took Prednisone in combination of any other conventional DMARD or biologic DMARD. My rheumatologist believed that Prednisone alone was bad enough because of immunosuppression but seemed to think 3 mg or less wasn't so bad.

Whenever I had an infection while on Prednisone in combination with something else, my rheumtologist blamed it in too much immunosuppession compared to saying either Prednisone or the other medication caused the infection.

Prednisone alone increases the risk of diverticulitis. Prednisone in combination with Kevzara compounds that risk. Were you ever able to stop Prednisone when you were taking Kevzara???

I had some problems with low neutrophils when I first started Actemra along with Prednisone. My rheumatologist delayed a few doses of Actemra until my neutrophils improved. Apparently the absolute neutrophil count is more important than the percentage count. While a complete blood count (CBC) with a differential shows both total white blood cells and the percentage of each type, the absolute number is more clinically useful.

Absolute neutrophil count (ANC) is the actual number of neutrophils per microliter of blood and gives a truer picture of your immune system's ability to fight off infections.

After I was able to taper off Prednisone and treated with Actemra alone--my blood counts normalized. I don't seem to get many infections anymore.

As for diverticulitis ... I was very worried about that. My rheumatologist screened me for diverticulitis before starting Actemra. The "screening" amounted to asking me if I ever had any bowel problems while I was on Prednisone. I denied having any problems but I took omeprazole for years while I was on prednisone to "protect" my gut.

A few months ago I had a colonoscopy. I was very relieved that only a small polyp was found but no diverticulosis or evidence of diverticulitis was found after 6 years of being on Actemra. I stopped taking omeprazole shortly after Prednisone was stopped.

Actemra (tocilizumab) increases the risk of diverticulitis, the infection of diverticula, but does not cause the underlying condition of diverticulosis, which is the formation of the pouches themselves. I assume Kevzara is the same.

@dadcue I was diagnosed with Crohns in the late 90’s. I started prednisone in the fall of 2011 for PMR. For a few years I was also on methotrexate. So after a flare last fall I agreed to start KEVZARA. I had beef told by a rheumatologist at Mayo Clinic that if I had to increase above 5mg I may have to consider a biologic. I have severe diverticulosis and have had bouts with diverticulitis in the past. I’ve never had as many infections in such a short period. My Dr. was concerned about a perforation. I have already had a consult with a colorectal surgeon and would probably have to a bag if I were to have a resection. So for me being on a biologic is way worse than prednisone. .

@tweetypie13 I did not use kevzara. I was able to wean off steroids. I think as Dadcue mentioned its not so much the tapering of kevzara that is the problem but the disease itself. I chatgpt all my stuff. I have become addicted to answering any of my questions. I also like Dr Megan. she has many videos discussing a range of subjects on prednisone use.

@grumpa
I don't think my rheumatologist would have ever started me on Actemra with a history of Crohns. I was led to believe that Actemra and Kevlara are prohibitive for anyone with inflammatory bowel disease (IBD).

Ever since I was diagnosed with reactive arthritis in the early 1990's, I have always been afraid of developing IBD. It was an enteric infection that ushered in a slew of problems for me.

I had my first colonoscopy that was ordered by a rheumatologist who wanted to see if I also had Crohns back in 2008. When PMR was subsequently diagnosed, I was started on long term Prednisone. I felt vindicated because I was treating myself with many short term bursts of high dose Prednisone for 15 years before PMR was diagnosed.

Crohn's and Reactive Arthritis are in the same spectrum of disorders. I remember when I was first diagnosed with reactive arthritis with uveitis in the early 1990's. The primary care doctor that diagnosed me with Reactive Arthritis mentioned HLA-B27 but didn't want to do the test to see if I was positive or not. The only reason for not doing the test was that it wouldn't change my diagnosis or anything about how I would be treated in the future.

I was tested for HLA-B27 because I was curious and said it would be nice to know. I was positive for HLA-B27 and now my medical record is full of references to HLA-B27 associated things.
https://www.ncbi.nlm.nih.gov/books/NBK551523/
----------------------------
HLA-B27 is a gene that plays a role in the immune system. It is associated with an increased risk of developing certain autoimmune diseases, including Crohn's disease.

I used to be active on forums for spondyloarthritis. There were people with Crohn's on those forums. Everyone it seemed was being treated with various biologic treatments. I left the spodyloarthritis forums because nobody was being treated with long term Prednisone like I was. In fairness, they all had their various specialty doctors and I was treating myself with Prednisone until PMR was diagnosed many years later. That was when I got the attention of several specialists but never a gastroenterologist.

I just remembered ... it was another enteric infection that triggered the multiple, bilateral, and extensive pulmonary embolism (PE) that I had. The intensive care doctors were inclined to suggest that Prednisone contributed to the event but called the PE unprovoked.

My primary care doctor apologized for possibly missing something. I told him about the enteric infection before the PE. He said people have enteric infections all the time and don't have a PE like I had.

I told my primary care doctor there was no need to apologize. I was the one who refused the pulmonary function test that he recommended when I was complaining about being short of breath with exercise intolerance about 6 months before the PE happened. My primary care doctor said the report he got from the intensive care unit said I had an "acute PE" so I wasn't having chronic PE's.

Now that I'm off Prednisone my medical history seems boring now compared to when I was taking Prednisone. The sequence of events leading to the PE suggests a complex interplay between an underlying inflammatory process being managed with Prednisone combined with an infection.