Kevzara (sarilumab) to treat PMR

Now I'm laying in bed....craving a steak!!!
Thanks for the laugh!!

Hi @pamsjourney
I had a very short experience with Kevzara so I am not the best example. I had a preexisting condition that flared with Kevzara so was only able to take 2 sbhots. That said, I had absolutely no side effects during the month that I underwent treatment. I hope others can provide more detail. Good luck!

Hi, interesting that you mention keeping a pain and dose log. I started doing this from day 1 of the Prednisone journey. It has helped me to understand the diet, stress, dose, pain connections and i found producing a graphic representation in excel of the dose changes and duration during tapering was also enlightening. This was how i realized that dose changes of more than 2mg could result in withdrawal symptoms for me, that splitting the dose and having a small amount in the afternoon meant a better nights sleep and less morning stiffness. I also realised that red meat definitely caused more pain, that 3 months of the strict vegan diet wasnt causing less pain and that days where i was stressed from looking after triplet 4yr olds resulted in a flare of pain symptoms !!!

Thank you for the info!!
Hope you're doing ok!

I'm sorry you weren't able to continue taking Kevzara.

If your preexisting condition was another autoimmune condition maybe a different biologic would work. I have another autoimmune condition called uveitis. The IL-6 inflammation pathway isn't implicated so much for uveitis. In my case, Kevzara isn't likely to work for uveitis but an IL-6 inhibitor worked extremely well for me to treat PMR.

Multiple autoimmune conditions create a dilemma. What works for one condition might not work for the other condition. Taking two biologics is not an option.

There are several preexisting medical conditions when Kevzara isn't recommended. The following are the conditions I'm aware of.

Liver:
Kevzara isn’t recommended if you have a liver problem, such as hepatitis. This is because using this drug may worsen your liver problem.

Diverticulitis:
During Kevzara treatment, it’s possible to develop a gastrointestinal (GI) perforation (hole or tear in an intestine or the stomach). If you have a condition called diverticulitis, you may have an increased risk of this tear. Your doctor can help you weigh the pros and cons of Kevzara treatment.

History of tuberculosis (TB) or recurring infections:
Be sure to talk with your doctor if you’ve had tuberculosis (TB) or have any infections that keep returning before starting Kevzara.

Use of corticosteroids or NSAIDs:
This one is debatable because most people are taking Kevzara to enable them to taper off prednisone.

If you already take a corticosteroid or nonsteroidal anti-inflammatory drug (NSAID), you may have an increased risk of developing a gastrointestinal perforation while you use Kevzara. I don't think this risk applies to Kevzara alone but I don't know for sure.

Many people taking long term prednisone are already at risk of having gastrointestinal (GI) problems.

@dadcue, thanks so much for your post. This info was provided to me by the Kevzara representative that helped to get me the discounted rate at the start of the medication consideration. Unfortunately, I did not know that I had benign hepatic liver cysts before I started Kevzara. I was informed that I had probably had them all my life without any issues. I started feeling some discomfort in my abdomen after the 2nd injection and my very in tune rheumatologist did not ignore the comment and halted the medication and referred me to a gastroenterologist for testing. Kevzara can actually grow the cysts and cause the need for surgery so it is not recommended for anyone with that history. I am very fortunate that it was caught early and appears to have resolved itself but I am still being closely monitored. Thanks so much for doing the dig that could save someone else from going through this kind of problem. Blessings!
Sandi

Kevzara wasn't available for PMR when my rheumatologist wanted me to try a biologic for "refractory PMR". I was on daily prednisone for 12 years to treat PMR. Actemra (tocilizumab) was tried because it was FDA approved in 2017 for GCA. Kevzara was FDA approved for PMR in 2023.

My rheumatologist believed Actemra should work for PMR because of how PMR and GCA are associated. In one year, I was off prednisone and PMR wasn't refractory anymore.

Sometimes I think people who have refractory PMR have more than one autoimmune problem at the same time. Uveitis is associated with inflammatory arthritis and not with PMR. I was diagnosed with reactive arthritis at least 20 years before PMR was added on to my diagnostic list of things.

Within a couple of weeks after getting off prednisone the first time and not having any PMR symptoms, I had a massive flare of uveitis but no PMR pain. Uveitis can cause vision loss so it was given priority over PMR.

My usual ophthalmologist of many years referred me to a uveitis specialist. The uveitis specialist thought I should have been referred to her years before. I had a long history of recurrent uveitis but I never had a flare when I was taking daily prednisone for PMR.

Actemra was stopped because it wasn't deemed to be optimal treatment for uveitis. I was placed back on 60 mg of prednisone and Humira (adalimumab) was started. Humira is a TNF-inhibitor which isn't deemed to be useful for the treatment of PMR. Humira probably worked for uveitis because it went back into remission.

Unfortunately PMR returned and I was unable to taper off prednisone and got stuck on 15 mg again. My rheumatologist and I had a long discussion about restarting Actemra. He said it would be impossible to treat both PMR and uveitis with the same biologic. I couldn't take both Humira and Actemra. He gave me the choice of which biologic worked best for me. I didn't want to be in constant pain so I chose Actemra and tapered off prednisone in a few months the second time.

I figured uveitis was an intermittent problem recurring every couple of years. If uveitis happened again, I could take 60 mg of prednisone again and taper off quickly again. A high dose of prednisone followed by a fast taper always worked for past flares of uveitis.

Humira was only being used to prevent uveitis from recurring but Humira didn't prevent the constant PMR pain from recurring.

I'm now doing a monthly infusion of Actemra which seems to work for PMR and has prevented a flare of uveitis for the last 2 years at least. In a total of 4 years of being on Actemra, I have very few if any side effects. My liver enzymes are slightly elevated though.

Actemra and Kevzara have similar risk profiles and they are both IL-6 blockers.

You are amazing and I am glad that you found something that works for you and are here to share your experience! I am praying for some serious pain relief because right now I am stuck at 15 mg of prednisone and pain is definitely a constant concern. Hoping to be given the okay for a new biologic soon. Fingers crossed! ❤️

Update on the update. I am Pred free since mid November. 18months total on Pred and 2 years, 3 months since onset of PMR symptoms. Labs last month were normal. Some pain remains in shoulders and sometimes have difficulty rising from sitting position after sitting for a long time. Taking Aleve a couple of times/week, which helps a little.

I was diagnosed with PMR at age 50. I woke up one day and suddenly could not lift my arms and could not walk up stairs without gripping the rail and pulling myself.
The good news: My PMR was treated with prednisone. I took it for two years and then weaned myself off it. PMR has never returned. I am now 75.