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.

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Profile picture for kjoed53 @kjoed53

@joyl263
I did respond to it. The first day was amazing. I was pain free for the first time in months. The second day was also good and I slept 9 hours instead of the 5-6 I was before pred. By day 3 it was reducing the pain significantly but not eliminating it. I'm on day 4 now, having taken my pred two hours ago. My pain is significantly reduced but not gone. I don't know if I'm expecting too much or not.

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@kjoed53 This is when you need to understand the half-life and the steady state of a drug. The half-life is the time it takes for half of a single does is eliminated from your body. The rule of thumb is that it take 5 half-lives for a drug to completely be eliminated from your system.
Steady state is the concept of the balance of drug in your system achieved between taking a dose and the elimination of the drug by the body, resulting in a stable concentration of the drug in our body.
The half-life of Kevzara is 8-10 days and the steady state is achieved 28 to 50 days after your first dose. Meaning sometime during your second month you will achieve steady state. Until you get to the steady state each dose you take means you are getting closer - once at steady state the amount of drug you eliminate naturally between doses is equal to the amount of drug you take in a single dose.
Hope this helps you set expectations and better understand how drugs work.

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Profile picture for stonewheel @stonewheel

@kjoed53 I didn’t know your heart beat rate had increased, along with glucose (expected, mine has increased too but my PCP and rheumatologist seem ok with my level.) Somehow, my blood pressure has improved (my eyesight too, weird, I know) it had always been a bit high but now is in the normal range, go figure.

This is a bizarre disease!

If you can’t tolerate the pain, I’d up the Prednisone dosage for a few days to try for some relief. I could barely move and the pain kept me from sleeping. PCP started me on 40mg/day.
If you can tolerate the pain, (and there are some out there trying to outlast it taking nothing but Tylenol/Ibuprophen cocktails) stay on the lower dose and continue to manage the side effects.
For me, side effects are the new norm.
I wish you the best of wishes and luck k’53. Keep letting us know what you decide and how you are doing. We are all learning about PMR, including the doctors. God bless them.

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@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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Profile picture for Mike @dadcue

@stonewheel

I had multiple blood clots in both of my lungs that were documented as a massive pulmonary embolism (PE). The event was called "unprovoked" and I was told that I was lucky to be alive. I heard whispering outside my ICU door about prednisone being a factor for why I had such a massive PE. Did your doctors say prednisone might be a contributing factor for your blood clot?

I usually say "long term" prednisone increases the risk of side effects. I'm beginning to think that "short term" prednisone isn't any better.
https://www.uspharmacist.com/article/shortterm-corticosteroids-increase-risk-for-range-of-conditions
I guess the overall risk is still very low but when a patient is one of the "unlucky ones" to have a serious side effect then the overall risk doesn't matter.
--------------------------------
I remember a self proclaimed "expert" on another forum saying that prednisone side effects are easy to manage. Obviously that expert never did patient care in a hospital.

It was also said that if I needed Prednisone for the rest of my life that was okay if it improved my quality of life. My life could have been shortened by 20 years when I had the PE. I have to admit my quality of life was pretty good on prednisone up until I had the PE.

Since my PE was so massive and unprovoked, I was told I would need to be on warfarin for the rest of my life. I took warfarin daily for about 15 years along with all my other cardiac medications.

A few years ago I was evaluated to see if I could switch to Eliquis instead of warfarin. I told my doctors that I was on high dose prednisone at the time of my PE but Actemra allowed me to taper off Prednisone. I was already off all my other cardiac medications. That was when it was decided that I didn't need any blood thinning medication anymore. Warfarin was stopped so my treatment wasn't lifelong. I have been able to survive 3 more years without warfarin and I haven't had any blood clots.

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@dadcue Drug risks are a percent of hundreds to thousands of people who will have a specific problem. I am a mathematics major and 25 years ago when m breast surgeon quoted me my chance of recurrence - I looked her in the eye and told her my personal chance is either 0% or 100% - that no one has a percent of a medical problem. I look at the list of drug side effects the same way - either you have it or you don't. I make treatment decisions with that in mind.

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Profile picture for jabrown0407 @jabrown0407

@dadcue Drug risks are a percent of hundreds to thousands of people who will have a specific problem. I am a mathematics major and 25 years ago when m breast surgeon quoted me my chance of recurrence - I looked her in the eye and told her my personal chance is either 0% or 100% - that no one has a percent of a medical problem. I look at the list of drug side effects the same way - either you have it or you don't. I make treatment decisions with that in mind.

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@jabrown0407
Sounds reasonable to a degree, but if you base all medical and health decisions on either a 0% or 100% outcome, you are limiting your options and optimism, aren't you?

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Profile picture for jabrown0407 @jabrown0407

@kjoed53 This is when you need to understand the half-life and the steady state of a drug. The half-life is the time it takes for half of a single does is eliminated from your body. The rule of thumb is that it take 5 half-lives for a drug to completely be eliminated from your system.
Steady state is the concept of the balance of drug in your system achieved between taking a dose and the elimination of the drug by the body, resulting in a stable concentration of the drug in our body.
The half-life of Kevzara is 8-10 days and the steady state is achieved 28 to 50 days after your first dose. Meaning sometime during your second month you will achieve steady state. Until you get to the steady state each dose you take means you are getting closer - once at steady state the amount of drug you eliminate naturally between doses is equal to the amount of drug you take in a single dose.
Hope this helps you set expectations and better understand how drugs work.

Jump to this post

@jabrown0407
Thanks for the explanation. I'm guessing that you're saying to stay patient and eventually I'll get to the point where the meds are being maximized in my body and I will feel the full relief that they are capable of providing.

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Profile picture for jabrown0407 @jabrown0407

@dadcue Drug risks are a percent of hundreds to thousands of people who will have a specific problem. I am a mathematics major and 25 years ago when m breast surgeon quoted me my chance of recurrence - I looked her in the eye and told her my personal chance is either 0% or 100% - that no one has a percent of a medical problem. I look at the list of drug side effects the same way - either you have it or you don't. I make treatment decisions with that in mind.

Jump to this post

@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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Profile picture for kjoed53 @kjoed53

@jabrown0407
Sounds reasonable to a degree, but if you base all medical and health decisions on either a 0% or 100% outcome, you are limiting your options and optimism, aren't you?

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@kjoed53

Good point! I like how you think.

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Profile picture for kjoed53 @kjoed53

@jabrown0407
Sounds reasonable to a degree, but if you base all medical and health decisions on either a 0% or 100% outcome, you are limiting your options and optimism, aren't you?

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@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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Profile picture for kjoed53 @kjoed53

@jabrown0407
Thanks for the explanation. I'm guessing that you're saying to stay patient and eventually I'll get to the point where the meds are being maximized in my body and I will feel the full relief that they are capable of providing.

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@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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Profile picture for stonewheel @stonewheel

@kjoed53 I didn’t know your heart beat rate had increased, along with glucose (expected, mine has increased too but my PCP and rheumatologist seem ok with my level.) Somehow, my blood pressure has improved (my eyesight too, weird, I know) it had always been a bit high but now is in the normal range, go figure.

This is a bizarre disease!

If you can’t tolerate the pain, I’d up the Prednisone dosage for a few days to try for some relief. I could barely move and the pain kept me from sleeping. PCP started me on 40mg/day.
If you can tolerate the pain, (and there are some out there trying to outlast it taking nothing but Tylenol/Ibuprophen cocktails) stay on the lower dose and continue to manage the side effects.
For me, side effects are the new norm.
I wish you the best of wishes and luck k’53. Keep letting us know what you decide and how you are doing. We are all learning about PMR, including the doctors. God bless them.

Jump to this post

@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.
---------------------------------
"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."
---------------------
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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