Kevzara side effects

"I was able to see on a list of possible side effects for Kevzara, that it can exacerbate side effects from pre-existing auto immune disorders? So my question is, has anyone else had this happen?"
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No but I'm an Actemra user. I seem to get outnumbered by the Kevzara users for PMR so I will defer to them. However, Actemra and Kevzara have the same classification because they are both IL-6 inhibitors.

I have multiple autoimmune disorders and Actemra seems to control all of them. I don't think any of my pre-existing autoimmune disorders before PMR were exacerbated. I do believe that Kevzara and Actemra only work for certain autoimmune disorders that primarily involve IL-6 related inflammation and not other autoimmune disorders that don't primarily involve IL-6 inflammation.

There are many other autoimmune disorders that involve different inflammation pathways and different tissues in the body so they all can't be treated the same.

The universal anti-inflammatory medication is probably prednisone which works for nearly every autoimmune condition. Prednisone works for almost all autoimmune conditions because it doesn't target just one specific pathway. Prednisone is more like a "master switch" that turns off the immune system by inhibiting multiple inflammatory pathways.

One reason Prednisone comes with so many side effects is because it replaces the hormone cortisol. Cortisol is regulated naturally by the body because too much cortisol is just as bad as too little cortisol.

When we take Prednisone instead of cortisol we almost always are taking too much or too little prednisone. The body doesn't have any way to regulate the amount of prednisone we take. The side effects from Prednisone is the only means our bodies have to tell us if we are taking too much or too little Prednisone.

Overall, my side effects are minimal from Actemra compared to the side effects I had from Prednisone. That doesn't mean there aren't any potential side effects from IL-6 inhibitors.\
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By the way ... I have trigeminal neuralgia (TN) instead of occipital neuralgia (ON). I had flares of TN whenever my systemic inflammation levels from PMR were too high. I used to call TN my "inflammation alarm." I needed surgery to stop TN.
https://www.mayoclinic.org/diseases-conditions/trigeminal-neuralgia/symptoms-causes/syc-20353344
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Do you have GCA that is causing you to have occipital neuralgia? Occipital neuralgia in giant cell arteritis (GCA) is frequently caused by vasculitis and swelling of the occipital artery. This inflamed artery irritates the adjacent nerves, leading to continuous aching or burning pain at the base of the skull.
https://pmc.ncbi.nlm.nih.gov/articles/PMC11729197/

@dadcue Hi, I just started using the Kevzara injector pen 3 weeks ago and within a few days, my Occipital Neuralgia has come back full force. I’m using the Kevzara, to help me taper off prednisone, which I’ve been on for Polymyalgia Rheumatica for 4 years. My PMR, came on with Occipital Neuralgia in 2022. I’ve been on 5mg of prednisone and symptom free, until I began the Kevzara. Besides the flare of my ON, I’m having a decent sore throat daily and feel like I’m getting a virus, but no fever. Just intermittent body aches and sweats.
I have a video chat in a week with my Rheumatologist, to discuss all of the is.

@lori62yb

This is all very interesting to me. Prednisone is sometimes used to treat occipital neuralgia. Doctors may prescribe a short-term "burst" of high dose prednisone to quickly reduce inflammation around the irritated occipital nerves. I only know this because of having trigeminal neuralgia (TN).

I had a terrible time with TN. My case of TN was a "vascular problem" as much as it was a nerve problem. It was "untreated" with the conventional ways of treating TN for many years. I only needed to take a burst of high dose prednisone and TN would stop temporarily until I tried to decrease my prednisone dose again. I took a lot of prednisone trying to control TN but that is one reason why TN isn't treated with prednisone! It is not typically a long-term solution due to potential side effects.

A neurosurgeon was skeptical of how I managed TN for 20 years without any nerve pain medications. When he reviewed my medication list prior to surgery for TN, he asked me what I took for pain. He said the patients he sees usually have "a list of pain medications a mile long" trying to treat TN. He didn't see any pain medications when he looked at my medication list. I had to tell the surgeon that I only took prednisone but he found that hard to believe.

I would suggest that trying to taper off prednisone is causing your flare of occipital neuralgia. I don't think it is a side effect from Kevzara.

Since you feel like you are getting a virus ... I would suggest that is a symptom of prednisone withdrawal and/or adrenal insufficiency. I had that problem and it felt like a bad case of the flu.
https://www.webmd.com/rheumatoid-arthritis/prednisone-taper
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Secondary adrenal insufficiency is another lovely side effect from long term prednisone use. I wasn't made aware of this until I got to 7 mg of prednisone and I needed an endocrinologist.
https://connect.mayoclinic.org/discussion/adrenal-insufficiency-and-tapering-prednisone/
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Kevzara should help with PMR but trying to taper off Prednisone still isn't an easy thing to do.

I want to know more about occipital neuralgia. I have several symptoms and have been searching it online and here. GCA has been ruled out with resent US and biopsy, but I’m not so sure. I don’t want it but the scalp itch, sharp pains to the touch, headaches seems to fit. Like GCA in occipital nerve area arteries?
I’m tapering Prednisone (4mg) and 22 weeks of Kevzara.

@stonewheel

Vascular medicine and neurology go together. In other words, blood vessels and nerves tend to be in close proximity to each one. When arteries get swollen and inflamed they tend to compress nearby nerves. I assume this can happen with occipital neuralgia.
https://www.health.harvard.edu/pain/occipital-neuralgia-symptoms-and-treatments.
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The brain stem is where many nerves and blood vessels converge in a very small space. My brain stem was where my surgery for trigeminal neuralgia was. It is called Microvasular Decompression (MVD) surgery for a reason. The surgery can only be done under a special high powered microscope with specialized micro-instruments.

The unfortunate thing that was discovered during my MVD surgery was my trigeminal nerve and nearby blood vessels were not merely running together. A blood vessel was running through my trigeminal nerve in places and couldn't be separated.

My neurosurgeon conceded that prednisone was helping the inflammation and swelling in the area. Because the blood vessel was piercing and woven through my trigeminal nerve, safely separating them during a Microvascular Decompression (MVD) surgery without causing major nerve damage was impossible.

@stonewheel
Hello! Four years ago, my ON started with a sudden onset headache, which I didn’t think was a headache, as it was a searing pain at the crown of the back of my head. It came on while is was brushing my teeth around midnight. It felt like someone had pulled my scalp off and put it back on. It felt like what a bad abrasion feels like, when you touch it…but to the 100th power. I took 2 Tylenol and went to bed. It helped a bit, but it progressed the next day to spread down behind my right ear and into my neck. Over time the ability to sleep on my back or right side was impossible, as it was so tender in that area.
Within a week of the ON onset, which was not year diagnosed, and I had been put on various pain killers for the pain….my Polymayalgia Rheumatica started. I work out a lot, so at first I thought I’d overdone a workout, but the PMR quickly spread up the back of my legs and up,to my shoulders. Finally I was put on Gabapentin, which was a life saver! Within 24 hours, my ON was so much better! I had the ultrasound to rule out GCA, and made an appointment to see a Neurologist who specializes in headaches. After a 3 month wait, I was seen and diagnosed with ON. The Gabapentin was kept at bay, while I waited to be seen.
The PMR was raging during this time and I finally got in to see a Rheumatologist who after a lot of tests, diagnosed me with PMR, I had no idea that PMR and ON can go hand in hand. I’ve been on steroids for 4 years and unable to taper below 4mg, without being in extreme pain, my PMR spread into my clavicle, which is only seen in 5% of all PMR cases…lucky me!
Since I also have Osteoporosis, my Rheumatologist wants me off my prednisone, so I’m currently on Kevzara injections every 2 weeks. Shortly after m fist injection, my ON began creeping back in. I have yet to begin my steroid taper, as I need to,wait til the Kevzara has been in my system for 2-3 months…so this ON flare isn’t related to any taper. It can only be the Kevzara. Kevzara has information stating it can exacerbate symptoms in some people of their other underlying auto immune diseases.
I have a video chat soon with my Rheumatologist, about my continued use of Kevzara, as she message me about possible other options.
I’m currently using my Gabapentin to help with my ON and hopefully it will help. So far it isn’t working much. I do believe Kevzara is the reason and I can’t imagine what it will be like, when I start my prednisone taper in August.
I hope you feel better soon! Please keep me posted.🦋

@lori62yb
Hi. Thank you for responding. I am reading your reply as I walk to my car from seeing my rheumatologist.
I hope your Prednisone taper goes well and you can successfully stop it. I don’t have the cranial pain as badly as you and I do have osteoarthritis along with PMR.

SED Rate and CRP levels are low low.

But, because my Absolute Neutrophils and WBC are also so low, she wants me to stop Kevzara for 6 weeks, until I see her again.

We discussed seronegative RA, Methotrexate and leflunomide.

We further discussed my scalp and hand pain. She wants me to see an endocrinologist because this may be related to my hypothyroid problem of 20 years, its treatment and medications needing adjustment. My THS is 0.03, too low, T4 very high normal at 1.7 and , T3 is normal at 4.

Needless to say, I am very depressed. I need some time to let it sink-in.

I wish you great health!

@stonewheel

The low neutrophil counts can be a transient problem which goes away after holding a dose or two of IL-6 inhibitors. My counts were low initially but rebounded. My WBCs are currently in the low normal range but my rheumatologist says I don't have a higher risk of an infection. They just tell me to be careful.
https://pmc.ncbi.nlm.nih.gov/articles/PMC7376291/
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I'm not sure about the "elephant in the room" which my primary care doctors called my newest problem. I'm scheduled to see my rheumatologist next week to see if I need to stop Actemra.

A surgeon already said I would have to stop Actemra for a few months. I told the surgeon that I would "rule out" surgery if that was the case. The surgeon wants me to discuss my options with my rheumatologist. Then I need to see the surgeon again. Most likely, I probably would need prednisone again except the surgeon said prednisone would be worse than Actemra.

I like my first endocrinologist except now I see a second endocrinologist because there are different specialities within endocrinology.

@dadcue
Right.
Thanks.
I too don’t see why Occipital Arteries couldn’t press on Occipital Nerves and cause the sore, itchy, stabbing, and numbness to my crown in back and on both sides above and behind my ears.
My Rheum, said stop Kevzara but continue Prednisone at 4mg.
See my other reply, probably above or below this.

flare-like symptoms or worsening of existing conditions shortly after starting Kevzara, although it can be difficult to tell whether it is a medication side effect, a temporary adjustment period or simply the underlying Polymyalgia Rheumatica becoming more active as prednisone is reduced, and while your rheumatologist may not think the clavicle and occipital neuralgia flare are related, the timing you describe worsening shortly after each injection makes it reasonable to discuss further with them, especially since some patients have reported unusual pain flares after starting biologic medications.