1. < Polymyalgia Rheumatica (PMR)
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Prednisone to Kevzara back to Prednisone. ( Hope not )

Posted by tadatada1 @tadatada1, Jun 13, 2024

PMR diagnosed High SED Rate I have been on prednisone for about two years starting at 15 mg and eventually figured out that my break even was 10 mg. I tried lowering my dose a few times and my pain severely increased especially below 7 mg : I have gained weight ( 20 lbs ) I started on Kevzara three months ago I complained to the doctor that my legs are very weak before I started kevzara . My thighs are very weak I need support to get up from the floor . She said I had prednisone myalgia . I am now down to 1 1/2 mg prednisone. I have pain in my knees ( never ever had knee pain ) weakness in my legs and neck pain ( I previously had neck pain and don’t know if it is related to being off prednisone and not related to PMR )
My sed rate is still one but my WBC is now 2.5 Down from 5.7 before Kevzara. It was 3.4 After 6 weeks on kevzara Doctor wants me to skip my next dose of Kevzara and take a blood test before the due date next Friday and one a week after the due date. My big fear is without prednisone and Kevzara I might have very severe pain.
It took a long time to lower my prednisone
What should I do next. Don’t want severe pain
By the way I have noticed anal leakage due to prednisone as commented on other summaries and think my slight incontinence has increased

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

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grumpa | @grumpa | 2 days ago
In reply to @dadcue "@grumpa I don't think my rheumatologist would have ever started me on Actemra with a history..." + (show)
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@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/
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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.

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There is nothing on the Kevzara website referencing not to take if a Crohn’s patient. There are many biologics that are approved for Crohn’s. Most come with their own similar warnings like Kevzara and Actamara. Personally I am glad to be back on prednisone I’ve never had the issues with infections while on prednisone. We can be so different with our reactions to medications. I’m highly allergic azathyaprine (Imuran) a dmard, but I was on Methotrexate , a different dmarad a few years.

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Mike | @dadcue | 1 day ago

A history of diverticulitis isn’t an absolute exclusion for Kevzara or Actemra. I think the warning says caution should be used. I just remember that my rheumatologist asked me about it before I started Actemra.

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tuckerp | @tuckerp | 1 day ago
In reply to @grumpa "There is nothing on the Kevzara website referencing not to take if a Crohn’s patient. There..." + (show)
Profile picture for grumpa @grumpa

There is nothing on the Kevzara website referencing not to take if a Crohn’s patient. There are many biologics that are approved for Crohn’s. Most come with their own similar warnings like Kevzara and Actamara. Personally I am glad to be back on prednisone I’ve never had the issues with infections while on prednisone. We can be so different with our reactions to medications. I’m highly allergic azathyaprine (Imuran) a dmard, but I was on Methotrexate , a different dmarad a few years.

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@grumpa not a Dr.s opinion or anything other than an AI search.

"Kevzara (sarilumab) is not an approved treatment for Crohn's disease, and its use is cautioned in patients with active Crohn's. It is an interleukin-6 (IL-6) inhibitor used for conditions like rheumatoid arthritis and polymyalgia rheumatica.
Kevzara and Crohn's disease
Active disease: Due to its immunosuppressive effects, Kevzara should be used with caution in patients with active Crohn's disease.
Immunosuppression and infections: Kevzara increases the risk of serious infections and opportunistic infections. For patients with Crohn's, who may already be taking other immunosuppressants, this risk is a significant concern.
Gastrointestinal perforations: In clinical trials for rheumatoid arthritis, there were reports of gastrointestinal perforations in patients taking Kevzara. This risk is especially relevant for individuals with Crohn's disease, which affects the gastrointestinal tract. "

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Mike | @dadcue | 1 day ago
In reply to @tuckerp "@grumpa not a Dr.s opinion or anything other than an AI search. "Kevzara (sarilumab) is not..." + (show)
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@grumpa not a Dr.s opinion or anything other than an AI search.

"Kevzara (sarilumab) is not an approved treatment for Crohn's disease, and its use is cautioned in patients with active Crohn's. It is an interleukin-6 (IL-6) inhibitor used for conditions like rheumatoid arthritis and polymyalgia rheumatica.
Kevzara and Crohn's disease
Active disease: Due to its immunosuppressive effects, Kevzara should be used with caution in patients with active Crohn's disease.
Immunosuppression and infections: Kevzara increases the risk of serious infections and opportunistic infections. For patients with Crohn's, who may already be taking other immunosuppressants, this risk is a significant concern.
Gastrointestinal perforations: In clinical trials for rheumatoid arthritis, there were reports of gastrointestinal perforations in patients taking Kevzara. This risk is especially relevant for individuals with Crohn's disease, which affects the gastrointestinal tract. "

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@tuckerp
Thanks Tucker. People have reported bowel perforations which have required them to discontinue Actemra. I was dreading my recent colonoscopy for fear they would find something that would require me to discontinue Actemra.

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grumpa | @grumpa | 1 day ago
In reply to @tuckerp "@grumpa not a Dr.s opinion or anything other than an AI search. "Kevzara (sarilumab) is not..." + (show)
Profile picture for tuckerp @tuckerp

@grumpa not a Dr.s opinion or anything other than an AI search.

"Kevzara (sarilumab) is not an approved treatment for Crohn's disease, and its use is cautioned in patients with active Crohn's. It is an interleukin-6 (IL-6) inhibitor used for conditions like rheumatoid arthritis and polymyalgia rheumatica.
Kevzara and Crohn's disease
Active disease: Due to its immunosuppressive effects, Kevzara should be used with caution in patients with active Crohn's disease.
Immunosuppression and infections: Kevzara increases the risk of serious infections and opportunistic infections. For patients with Crohn's, who may already be taking other immunosuppressants, this risk is a significant concern.
Gastrointestinal perforations: In clinical trials for rheumatoid arthritis, there were reports of gastrointestinal perforations in patients taking Kevzara. This risk is especially relevant for individuals with Crohn's disease, which affects the gastrointestinal tract. "

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@tuckerp I am well aware that it is no approved but a study was done at a major university hospital that had promising results but for some reason was not perused. The study was done by a European company. So that says to me that we don’t all know as much as we think we do

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tuckerp | @tuckerp | 1 day ago
In reply to @grumpa "@tuckerp I am well aware that it is no approved but a study was done at..." + (show)
Profile picture for grumpa @grumpa

@tuckerp I am well aware that it is no approved but a study was done at a major university hospital that had promising results but for some reason was not perused. The study was done by a European company. So that says to me that we don’t all know as much as we think we do

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@grumpa Boy thats the truth. Dadcue attached an article a few months ago . Whats changed since 1955. Article was discussing PMR but it applies to every auto immune. Cancer. Gerd, Crohns. We might be a little better at treating it but thats about it. We have no idea how to cure something. We have no idea in most cases what causes it. Then the fact that every one of us is different adds more complexity. There are no answers. I dont think any of us know how to respond to someone else. Just share our knowledge . What little we have.

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Mike | @dadcue | 21 hours ago
In reply to @grumpa "@tuckerp I am well aware that it is no approved but a study was done at..." + (show)
Profile picture for grumpa @grumpa

@tuckerp I am well aware that it is no approved but a study was done at a major university hospital that had promising results but for some reason was not perused. The study was done by a European company. So that says to me that we don’t all know as much as we think we do

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@grumpa
"I am well aware that it is no approved but a study was done at a major university hospital that had promising results but for some reason was not perused"
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I don't know very much about Crohn's Disease (CD). The following link goes into the details of targeting IL-6 as a treatment option for CD.

The dual role of interleukin-6 in Crohn’s disease pathophysiology:
https://pmc.ncbi.nlm.nih.gov/articles/PMC10722226/#B19
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Too much information for me but I found the following interesting.

"Clinical trials of CD patients have targeted IL-6 signaling in different mechanisms: blocking IL-6, neutralizing IL-6 receptor (IL-6R), or trapping the soluble IL-6/IL-6R complex. These trials have faced challenges and side effects in patients with gastrointestinal perforations and ulcers, for example, all of which highlight the dual role of IL-6 during intestinal inflammation and the need for this cytokine for intestinal tissue integrity."
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I can empathize with people who have multiple autoimmune conditions. My rheumatologist was being honest when he said, "It would be impossible to optimally treat all of my autoimmune conditions."

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