How does Kevzara help with PMR symptoms and pain? I am being weaned

Posted by tsharkey01 @tsharkey01, Sep 8, 2023

I have had Pmr for 15 months now. It took forever to get diagnosed. I have been on 20 - 5 - 1 mg prednisone. My rheumatologist wants me to try kevzara. Is it worth it? I have been this way so long now I have forgotten what normal feels like.

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

Profile picture for Mike @dadcue

@stonewheel

It helped me to separate what PMR was doing to me from what Prednisone was doing to me. I'm not sure what all PMR did to me except it caused me to have a lot of pain. From what I have read about PMR it isn't known to cause too much damage. PMR isn't supposed to last very long so I can't explain why my rheumatologist thought I had PMR for 12 years. I was more convinced that I still had PMR when Actemra worked so well for me. My rheumatologist still thinks I have PMR combined with a "full range" of other rheumatology problems. There isn't that much that is known about PMR alone except that it is very painful.

The effects of prednisone on the other hand have been well studied and the side effects have been known about for years. It was helpful to me when I decided that daily Prednisone was putting my body in a constant "fight or flight" response. The following is what artificial intelligence says about the body's fight or flight response.
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"Key Physiological Changes:
Heart & Lungs: Heart rate and blood pressure rise to pump blood faster, while breathing quickens to maximize oxygen intake.
Muscles: Muscles tense up, becoming prepared to react, fight, or flee, which can lead to trembling or shaking.
Energy Surge: The body releases glucose and cortisol, providing a burst of energy to deal with the threat.
Senses: Vision sharpens, and pupils dilate to allow more light in, leading to heightened alertness.
Suppressed Functions: Digestion shuts down, often causing "butterflies," nausea, or a dry mouth.

Signs of Fight or Flight:
Physical: Racing heart, sweating, shaking, shallow breathing, cold/clammy skin, and dilated pupils.
Behavioral: Impatience, anger, irritability, or panic, often accompanied by a feeling of being trapped or a sudden need to move.

Long-Term Impact: If constantly active, it can lead to exhaustion, high blood pressure, weakened immunity, and anxiety."
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Over the many years that I took Prednisone this was exactly what happened to me. To all of the above, I need to add that the blood clotting mechanism is enhanced in case we are injured during the emergency we face. The fight or flight response decreases the chance of bleeding to death in case we get injured.

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@dadcue exactly, all true.

I’ll add in the emotional “love/hate” relationship that I (and many others) also have with Prednisone, to create that “perfect storm” leading to more of a “snowball effect” of what you mentioned above.

But, the human mind and body are capable of change, adaptation, recovery, and healing. Willing manifestation of a focused outcome is what I force myself to do 24/7.

While I haven’t healed a broken bone by PMA (positive mental attitude,) my body has adapted to medications and also I’ve weaned myself off of them in the past, successfully.

I thought Prednisone would a simple take it and stop it. My body had been adaptable in the past, no need to think differently now. Ha, boy did I get a wake up call.

I am doing quite well though. Reading about the success of others, and yourself, here in this group, keep me inspired. I’m still chainsawing trees. Mowing a couple of acres a week, weed whacking, blowing, raking, shredding, gardening, driving where and when I want, baby sitting grandkids, walking or bicycling with them to the park, swinging, playing catch, doing housework, volunteering in the neighborhood, working out daily, and my private parts work wonderfully. People see me moving about and have no idea. All in all, I’m fortunate. I know it. I just have a few obstacles to overcome, or learn workarounds to deal with them. Hopefully the list won’t keep growing.

I have a list of things to do today, so I’d better get after it.

Best of wishes and luck to you and all of us.

Randy

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Profile picture for jabrown0407 @jabrown0407

@kjoed53 I'm not limiting my outcomes on a 0% or 100%. I am limiting my chances of getting something to that. Either you have it or you don't. Once you have it the outcome is entirely different. Outcomes are based on treatments, compliance and something I will call grace. To me grace is a compound component of willpower, belief system, support and body self healing. I primarily measure outcomes based on satisfaction of the patient.

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@jabrown0407

I understand this way of thinking too. Nothing wrong with it! The grace part is something to strive for. Having grace when you are in so much pain is hard though.

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Profile picture for Mike @dadcue

@jabrown0407
My first degree was statistics with an interest in human medicine. I was "disenchanted" with statistics because I thought numbers contained the answer to every question.

After I got my statistics degree it occurred to me that I didn't know anything about human medicine. A nursing degree helped me gain some knowledge about the medical world. Nursing also provided me with "job security" because I didn't know what good I could do in the statistical world.

My career was one of going back and forth between the analytical side of medical research and the "real world" side of bedside nursing. Some people said I was conflicted about the analytical world of medical research and the real world of nursing. I described myself as analytical with a compassionate streak. I gravitated more to nursing which was where I learned the most.

It was difficult and nearly impossible to apply research data to the complexity of individual patient situations.

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@dadcue
In my opinion, statistics can be made to look like nearly anything that you want it to. In the medical world, statistics identify commonalities that are basically guidance for diagnosis, treatment and outcome with the real world individual outliers being the wild card.

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Profile picture for kjoed53 @kjoed53

@stonewheel
My younger sister had PMR several years ago and she wouldn't take any prednisone, instead opting for 12 ibuprofen a day and trying to tough it out. It took a few years. I'm not sure why she thought 12 ibuprofen a day was better for her than prednisone, but that was her choice. I'm not supposed to take ibuprofen with my other meds, but I was taking 2 at bedtime before I was diagnosed and it did very little for me. I'll take the prednisone with all it's side effects for now. I've been pushing myself to do more and not just sit around waiting for it to go away. It might not help the physical aspect, but it keeps my mind occupied and I think that's a big part of coping.

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@kjoed53 do what you feel you can do. I exercise daily and physically move a lot. I push myself (within reason) because I believe that if I can more rapidly get fresh blood (oxygenated and medicated) to every cell in my body, then every cell, tissue, organ and system will recover, heal, and regenerate, if necessary, better and faster. Along with that is 8 hours of sleep, starting before midnight, because that is when our bodies heal.
Best wishes.
Randy

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Profile picture for stonewheel @stonewheel

@kjoed53 do what you feel you can do. I exercise daily and physically move a lot. I push myself (within reason) because I believe that if I can more rapidly get fresh blood (oxygenated and medicated) to every cell in my body, then every cell, tissue, organ and system will recover, heal, and regenerate, if necessary, better and faster. Along with that is 8 hours of sleep, starting before midnight, because that is when our bodies heal.
Best wishes.
Randy

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@stonewheel
I haven't had 8 hours sleep in almost two weeks. I fall asleep quickly but I wake up during the night and have a hard time getting back to sleep. That's been the pattern since I've been on prednisone. I'm retired and my wife is still working, so I stay busy with the chores without overdoing it. We also have a 6 year old so she keeps me moving too.

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Profile picture for Mike @dadcue

@kjoed53

Stay patient until you can determine whether or not the medication works. It might take 3 months or longer to know if Kevzara works or not. It might be anywhere between 0% and 100% effective.😀

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@dadcue What side effects did you experience?

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Profile picture for Mike @dadcue

I was diagnosed with PMR about 17 years ago. I took prednisone for 13 out of those 17 years. My rheumatologist wanted me to try a biologic similar to Kevzara. My rheumatologist didn't want me to take prednisone for the rest of my life and described the biologic as my "best chance" of ever getting off prednisone.

The biologic came with "no guarantee" that it would work. My rheumatologist just felt it was "worth a try" and I wouldn't know if it would work unless I tried it.

The biologic offered to me was called Actemra. It shares the same classification as Kevzara. Both medications are IL-6 receptor blockers, IL-6 is the pro-inflammation cytokine implicated in both PMR and GCA. When IL-6 levels are too high we have too much of the inflammation that results in PMR and/or GCA.

Both Actemra and Kevzara are large molecules that attach to IL-6 receptor sites in cells instead of the IL-6 cytokine. Somehow that allows inflammation to decrease and we feel less pain. Nobody knows precisely how these medications work. Both Actemra and Kevzara should work in the same way. They don't work immediately like prednisone does but after 3 months or so you should start to feel the difference.

Actema is FDA approved for GCA.

Kezvara was recently FDA approved for PMR

Both biologics were approved for the treatment of rheumatoid arthritis about 10 years ago but have since been approved to treat other types of autoimmune conditions.

Actemra worked for me. I was off prednisone a year after it was started. Technically, I still have PMR without the pain that PMR caused and the side effects that prednisone caused.

My rheumatologist thinks I'm better off being on Actemra instead of prednisone. I agree with my rheumatologist because I feel much better now than I ever did when I took prednisone for years and years.

I don't have any personal experience with Kevzara but it should work the same way that Actemra works.
https://www.actemra.com/gca/considerations/how-it-works.html.
I personally haven't had any serious side effects from Actemra. There are potential side effects. I think the side effect profile for both Kevzara and Actemra are similar.

My rheumatologist would say the risk of side effects from Actemra is less than the side effects from long term prednisone use. However, he also said that if I only needed a relatively small dose of prednisone for a relatively short period of time then prednisone might be better.

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@dadcue That was so informative. Really appreciate your comments.

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Profile picture for prettypatti76 @prettypatti76

@dadcue What side effects did you experience?

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@prettypatti76

My Prednisone side effects were numerous but I didn't always realize they were prednisone side effects. My prednisone side effects were somewhat insidious and I slowly accepted how I felt as my new normal. I forgot about how I felt when I didn't take Prednisone. I didn't realize how bad I was getting until I tried to convince someone that I felt "more normal" on prednisone. That person needed to convince me that "normal people" don't take prednisone. She said I was in dangerous territory taking prednisone like I was. She had the insight that I lacked because she had an adrenal crisis while taking prednisone.

I don't seem to have too many side effects from Actemra. My rheumatologist tells me when some lab values are little off but I can't say that I feel any different. What I really like about Actemra is that I no longer have to worry about how much prednisone I need to take every day. I still have some pain but that is tolerable.

My rheumatologist understands why I have the pain. It isn't all autoimmune pain and certainly not much of it is being caused by PMR anymore.

My biggest mistake was thinking prednisone was good for all kinds of pain. It is true that Prednisone works for a wide variety of painful conditions but prednisone isn't the best treatment for every kind of pain. I'm looking forward to the time when prednisone isn't a good treatment option for PMR. I think there are better alternatives already.

I have had five "good years" being completely off prednisone. I would not trade any of my five years after I got off prednisone while being treated with Actemra alone. My life isn't "pain free" but that isn't what I strive for anymore. There are some days when prednisone seems to be calling me but I don't listen to it. I still have a prescription for Prednisone "as needed" but I'm supposed to tell someone when I need it. I should tell my rheumatologist because I think that prescription has probably expired.

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Thanks so much for your reply. I sincerely appreciate it!

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Profile picture for kjoed53 @kjoed53

@stonewheel
I haven't had 8 hours sleep in almost two weeks. I fall asleep quickly but I wake up during the night and have a hard time getting back to sleep. That's been the pattern since I've been on prednisone. I'm retired and my wife is still working, so I stay busy with the chores without overdoing it. We also have a 6 year old so she keeps me moving too.

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@kjoed53 I’m retired and my wife still works so I’m accustomed to the gig. She’s finally retiring in June.

I told my PCP about Prednisone not allowing me to sleep so he prescribed me Temazapam 30mg for sleep. He said they were less addictive that alternatives.
I take one every night. I’ll worry about that addiction if it happens. Right now I’m addicted to Prednisone, (4 months) and am slowly working (tapering safely and as rapidly as I can) at ending the addiction to it (started at 40mg and now 7.5mg. Like you, I weigh benefits to risks and lol, I’m stopping one addiction at a time. I’ll worry about sleeping pills after I’m off Prednisone, if I’m addicted to them.
Sleep is a must with this. Tell your doctor you need something to assure to get sleep.

One thing I did early on, was tell my PCP that I need him to be my “Chief” doctor. I let him know what the specialists recommend, but he’s in charge. He understands my situation and he has already helped me change a dosage and frequency prescribed by a specialist. I told the specialist and she was real good with his recommendation.
All of my doctors are in the same”group” or “system.” I’ve made that happen so they can see everything all that is going on and don’t have to ask me.

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