Kevzara (sarilumab) to treat PMR

@dadcue Whoa - not sure how I led you to believe that I had a history of diverticulitis.

I was told the same thing you were told. I had not previously had diverticulitis, so I passed that hurdle, as well as the TB blood test and all the other showstopper concerns. My doctors were very straight arrow on "do you qualify?". I say "doctors" because I have my treating Rheumy and a consulting Rheumy at a leading teaching hospital. The hospital system has stellar credentials with treating Vasculitis (GCA) and PMR. Their GCA Vasculitis clinic is possibly the best in the US.

I even pinged my GI doctor and he green lighted it before I started my injections. Actually, when I had the diverticulitis, he was of the opinion that I really did not need to stop the Tyenne but my Rx Rheumy was not swayed at all!

Bowel perforation is a real risk of the IL-6 inhibitors and it is clear to me that Rheumy's don't want it on their watch. As the patient, I certainly don't want it as the result of treating anything!

@jabrown0407

You wrote:
"I had diverticulitis while on Tyenne and my Rheumy now wants me to take Kevzara."

I thought you meant you were going to switch from Tyenne to Kevzara after having diverticulitis.

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There seems to be some people who are started in IL-6 inhibitors who don't know if they have diverticulosis or maybe have had a bout of diverticulitis in the past.

I was asked about "any GI history" when I was started on Actemra. I was never told that I did but I certainly had an intestinal infection which triggered reactive arthritis. I also had a long 30 year history of corticosteroids and/or NSAIDs which are also known to increase risk of GI perforation. My rheumatologist only looked at my most recent colonoscopy and took my word for it that I didn't have any GI issues. Otherwise it is highly recommended to have a thorough GI evaluation prior to starting IL-6 inhibitors.

All you said is correct, but unfortunately you do not have my full context. What I have discovered is that little in the medical world is clearly black and white - it seems to be endless shades of some color in between. I have GCA and that left untreated can and will cause aneurisms in your large veins - mainly aortas and carotid. My imagining has shown signs of deterioration and thus the doctors are much more aggressive in how best to treat me. Trust me I am very concerned with the options we are now discussing and trust me I have several specialists involved. I also have kidney failure so any solution needs to be kidney kind. To top this I am hypersensitive to drugs. I can take the brand version of one of my BP drugs where the generic causes my BP to go into stroke territory. I even have a research pharmacist assisting me.

Everyone on this site is playing with different hands we have been delt. Please know I still have some cards I'm not showing Mayo Connect. I look to this site to help others as well as to be helped. I respectfully hope I achieve these goals.

How anyone could have diverticulosis and not know it or remember it escapes me. It is especially painful and it has taken literally months to get the inflammation eliminated. Antibiotics will take care of the infection, the inflammation is a different game. My case was mild and did not require hospitalization. Any worse I would have been in the hospital.

Actemra has been suggested for me as I have recently been diagnosed with PMR, but I do have diverticulitis and I am worried about a possible bowel perforation plus all the side effects of Actemra sound serious. I have been on 5 mg of prednisone since February and I have not liked the side effects either of this drug even on a low dose. It seems I am sensitive to any medicine. Is Actemra better than staying on prednisone?

@kettie I am sorry for the decision you face. Clearly diverticulitis is a contraindication for being on an IL_6 inhibitor. Before you make your decision I would suggest you discuss dosing and intervals of the drug since a reduced dose would be reasonable. Also, I would suggest you talk to your GI doctor and see what they say. If you do have a bowel perforation I suspect your GI doctor will be involved.

You did not say how long you have had PMR, how long it has taken you to get to 5mg prednisone, etc. If it is just PMR it should burnout in 2-3 years. Since there is not a test to confirm PMR many of us on this site believe that we have PMR plus other inflammatory problems. I fall in this group. After 7 years I was Dx with asymptomatic GCA, a naughty problem. Please talk with your Rheumy about this possibility also. It is easier to treat a known problem than an unknown problem. Getting the right Dx when you have PMR can be elusive.

I am faced with a similar decision and am still perusing options that do not include IL-6 inhibitors. There is no single right answer for any of us so it is not an easy project to research nor problem to solve.

Kevzara went through clinical patient trials and is approved for PMR. I was diagnosed last July 2025. And started on 20 mg of Pred. I am 76 with osteopenia/ osteoporosis. My Rhumatologist put me on a taper of 2.5 every two weeks and Kevzara every two weeks.
The Kevzara has been a game changer. I got off Pred last November. I am now extending out my Kevzara. Currently every 5 weeks an injection, then six weeks and hopefully I will successfully find remission. I am in neutropenia with low WBC and Neutrophils which is a side effect so I have blood work done before my next injection. Feeling great. No breakthrough pain through the process and off Pred.

@laurelfagan

It sounds like you had a very smooth transition from discontinuing prednisone and relying only on Kevzara. You seem to have avoided the relapses that are so characteristic of tapering off Prednisone.

It isn't that Prednisone doesn't work. It becomes very hard to taper off Prednisone without having a relapse. The longer you need Prednisone the more likely side effects will happen. One of the worst side effects from long term Prednisone is adrenal insufficiency.which makes you dependent on Prednisone.

Good luck with being able to stop Kevzara without having a relapse. You shouldn't have the problems associated with adrenal insufficiency since you didn't need Prednisone very long.

If you relapse after you stop Kevzara, it shouldn't be sudden severe pain. Stretching out the interval between Kevzara injections while monitoring your inflammation markers should reveal if PMR is still active. You probably won't experience the sudden excruciating pain of a relapse that is characteristic of tapering off Prednisone.

Thanks for the information. Getting in remission on this disease is everyone’s dilemma.
I am going to just extend my Kevzara by one week each injection. I have been on once a month now for five months so this time extend to 5 weeks, then six weeks etc. I am hoping my blood work also improves with the extension.
I have had 18 injections since last August! It has been a miracle drug except for my WBC lowering. Feeling great.

@laurelfagan

I do a monthly infusion of Actemra currently. I used to do the injections, I could only go 7 weeks between injections when my pain and my inflammation markers increased.

The reason I'm doing monthly infusions of Actema is because I can go 2 months between infusions if I need to in order to facilitate a surgery. I don't want to do the surgery and pain is the "deciding factor." The surgeon said I would need to be off Actemra for a month before surgery and a month after surgery. However, as long as I do a monthly Actemra infusion, I don't have enough pain to warrant a major surgery on my spine.

@laurelfagan
Thank you for sharing.
I have been looking for weeks/months about Kevzara tapering. Your reply is the first I’ve read about.

Did your rheumatologist suggest the adding of a week before the next injection? How long were you at 3-week intervals?

Besides your WBC being low ( mine is too, and it worries my rheumatologist), is your ANC also low? Mine is and so is my Platelet count, low. Is yours?

I’m sorry for the questions but I’ve been looking for answers and your reply is the first I’ve found about Kevzara tapering.