Prednisone to Kevzara

Posted by pkm1 @pkm1, May 10 8:14am

I am 69 and very active. I loved to play golf but have been unable since onset of PmR. My PMR was diagnosed a year ago after suffering joint pain that started 1-2 weeks after Covid vaccination (booster). Sudden onset. 2 Rheumatologists later, I took Prednisone 20mg for a nasty sinus infection and pain went away, so PMR diagnosis. Started on 20 mg and have tried for a year to taper off. Unsuccessful. Now Dr says I have to get off Prednisone and wants me to try Kevzara. While waiting for Rx approval. I cut Prednisone to 15 and so far have had less pain. Plan to drop again and see what happens. I have a couple of questions for you guys. 1. Does anyone else suffer with bowel incontinence as well (sudden uncontrollable poops-). 2. Is Kevzara a good idea. Trying to retire and concerned about cost and duration. Would appreciate any input.

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

I was approved for Kevrara but the cost is over $2000 a month. Does anyone have any other suggestions that I could take? My pain level is at least a 9. I'm alternating 7.5mg and 5 mg every other day. TIA

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@besmith57

I was approved for Kevrara but the cost is over $2000 a month. Does anyone have any other suggestions that I could take? My pain level is at least a 9. I'm alternating 7.5mg and 5 mg every other day. TIA

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The drug company provides cost assistance. You could call to see if you are eligible: 844-538-9272. In the U.S. they have 2 programs, one for people on private insurance and another for those on Medicare Part D or other government plans. I have Part D and am getting Kevzara for free.

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@linda7

The drug company provides cost assistance. You could call to see if you are eligible: 844-538-9272. In the U.S. they have 2 programs, one for people on private insurance and another for those on Medicare Part D or other government plans. I have Part D and am getting Kevzara for free.

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Thank you so much! I will give them a call this afternoon. Do you feel better on the Kevzara?

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@besmith57

Thank you so much! I will give them a call this afternoon. Do you feel better on the Kevzara?

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I do feel better but have only been on Kevzara for 2 weeks. My rheumatologist said that it will take at least 2 weeks to feel an effect. I need to wait 6 weeks before tapering the prednisone from my present 6 mg by .5 mg every 3 weeks. At 3 months I get labs done to see if I have any of the side effects that show up in labs like high liver enzymes and low white cells.

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@besmith57

Thank you so much! I will give them a call this afternoon. Do you feel better on the Kevzara?

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Remember Kevzara is trying to control the PMR restart or flare caused by the taper of the prednisone. Many on this site have said it doesnt help. It wont help unless its a true PMR. The level of pain your feeling is most likely from the taper. The lack of cortisol causes the pain. So you may not necessarily feel any help from the drug.

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@linda7

I do feel better but have only been on Kevzara for 2 weeks. My rheumatologist said that it will take at least 2 weeks to feel an effect. I need to wait 6 weeks before tapering the prednisone from my present 6 mg by .5 mg every 3 weeks. At 3 months I get labs done to see if I have any of the side effects that show up in labs like high liver enzymes and low white cells.

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I didn't really feel any different for 3 months when I started Actemra injections every 2 weeks. I did my usual 1 mg per month taper until I reached 7 mg. It was like a minor miracle that I didn't have a flare when I was on 7 mg. I decided to taper by 1 mg per week just to get the "inevitable flare" over with. When I tapered by 1 mg per week to 3 mg and I didn't have a PMR flare. I felt unwell but no PMR pain.

I contacted my rheumatologist because of not feeling well so he checked my cortisol level. My cortisol level was low so I was told to not taper any lower until I could be evaluated by an endocrinologist. I waited six months on 3 mg of prednisone until my cortisol level improved. My endocrinologist gave me the green light to discontinue prednisone.

In three months when your labs are checked maybe they could add an a.m. cortisol level.

Kevzara injections are weekly so maybe your PMR symptoms will respond faster. However, be aware of the adrenal issue on those lower doses of prednisone.

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@tuckerp

Remember Kevzara is trying to control the PMR restart or flare caused by the taper of the prednisone. Many on this site have said it doesnt help. It wont help unless its a true PMR. The level of pain your feeling is most likely from the taper. The lack of cortisol causes the pain. So you may not necessarily feel any help from the drug.

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I pray it works for me! Thank you.

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@tuckerp

Remember Kevzara is trying to control the PMR restart or flare caused by the taper of the prednisone. Many on this site have said it doesnt help. It wont help unless its a true PMR. The level of pain your feeling is most likely from the taper. The lack of cortisol causes the pain. So you may not necessarily feel any help from the drug.

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I think there are many possibilities including a low cortisol level that might explain pain on lower doses of prednisone. A low cortisol level may only explain a portion of what is causing the pain.

1) Many people discover their osteoarthritis pain gets worse on lower doses of prednisone. Kevzara might not help osteoarthritis.

2) While PMR pain should be controlled with Kevzara ... PMR might be still be active to a certain degree. Symptoms rule in this regard because inflammation markers are no longer reliable because of how Kevzara works. IL-6 levels will initially skyrocket in the blood but that doesn't mean all IL-6 receptors are blocked. Some inflammation can still happen.

3) A person might not have PMR only. My case is an example. I had a long history of reactive arthritis which didn't go away after PMR was diagnosed. I wasn't having any PMR pain after I tapered to zero prednisone the first time. Actemra was clearly controlling my PMR pain. However, injections of Actemra every two weeks didn't prevent a flare of uveitis from happening even though Actemra was working well for PMR. That saga is another long story but ultimately increasing my Actemra injections to weekly was better and a monthly infusion of Actemra has worked the best.

4) It could be prednisone withdrawal symptoms as compared to adrenal insufficiency. One is more temporary while the other may be permanent. or at least take longer to resolve.

5) It could be any combination of the above things or something else entirely.

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@dadcue

I think there are many possibilities including a low cortisol level that might explain pain on lower doses of prednisone. A low cortisol level may only explain a portion of what is causing the pain.

1) Many people discover their osteoarthritis pain gets worse on lower doses of prednisone. Kevzara might not help osteoarthritis.

2) While PMR pain should be controlled with Kevzara ... PMR might be still be active to a certain degree. Symptoms rule in this regard because inflammation markers are no longer reliable because of how Kevzara works. IL-6 levels will initially skyrocket in the blood but that doesn't mean all IL-6 receptors are blocked. Some inflammation can still happen.

3) A person might not have PMR only. My case is an example. I had a long history of reactive arthritis which didn't go away after PMR was diagnosed. I wasn't having any PMR pain after I tapered to zero prednisone the first time. Actemra was clearly controlling my PMR pain. However, injections of Actemra every two weeks didn't prevent a flare of uveitis from happening even though Actemra was working well for PMR. That saga is another long story but ultimately increasing my Actemra injections to weekly was better and a monthly infusion of Actemra has worked the best.

4) It could be prednisone withdrawal symptoms as compared to adrenal insufficiency. One is more temporary while the other may be permanent. or at least take longer to resolve.

5) It could be any combination of the above things or something else entirely.

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I agree completely. You got this figured out. I think drugs like Kevzara are very useful in trying to stop any subsequent inflammation that may result from the taper. Your case in point. I even think it may be necessary for drugs like MTX or LDN to even further widen the blanket. My education in steroids comes from my wife. She has GBM. I poison her body every day by giving her DEX. But as you pointed out, its not easy to say her issues are strictly AI and cortisol. If she builds any inflammation she goes into a coma and seizures increase. She has had meningitis, hydrocephalus, sepsis, and increased risk of infections. So we are on the same page. The human body can have a million things going on that are not as easy as saying you need to reduce prednisone. My wife is a testament to that. Simply restarting her adrenals is not the answer. The same applies for most with PMR. Somehow we all picked it up. But that opens a whole Pandora's box to what might be lurking in the background.

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