1. < Polymyalgia Rheumatica (PMR)

Prednisone to Kevzara back to Prednisone. ( Hope not )

Posted by tadatada1 @tadatada1, Jun 13 3:08pm

PMR diagnosed High SED Rate I have been on prednisone for about two years starting at 15 mg and eventually figured out that my break even was 10 mg. I tried lowering my dose a few times and my pain severely increased especially below 7 mg : I have gained weight ( 20 lbs ) I started on Kevzara three months ago I complained to the doctor that my legs are very weak before I started kevzara . My thighs are very weak I need support to get up from the floor . She said I had prednisone myalgia . I am now down to 1 1/2 mg prednisone. I have pain in my knees ( never ever had knee pain ) weakness in my legs and neck pain ( I previously had neck pain and don’t know if it is related to being off prednisone and not related to PMR )
My sed rate is still one but my WBC is now 2.5 Down from 5.7 before Kevzara. It was 3.4 After 6 weeks on kevzara Doctor wants me to skip my next dose of Kevzara and take a blood test before the due date next Friday and one a week after the due date. My big fear is without prednisone and Kevzara I might have very severe pain.
It took a long time to lower my prednisone
What should I do next. Don’t want severe pain
By the way I have noticed anal leakage due to prednisone as commented on other summaries and think my slight incontinence has increased

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jlo2252 | @jlo2252 | Jun 16 7:43am
In reply to @tuckerp "Funny. I have been trying to avoid anything that makes me old. I just turned 72...." + (show)
@tuckerp

Funny. I have been trying to avoid anything that makes me old. I just turned 72. I really need to install handle bars. I just keep thinking I'm not old. But I have been off steroids for a couple years and still left with soreness in my knees and hips. I go to gym every day. I actually have the chair. I dont have the cushion. Thank you.

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My husband replaced our two standard size toilets with two ADA certified toilets. Makes a big difference and its just a normal looking toilet. Guess I wasn’t ready to look old either! I’m 74…

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1 reply
tuckerp | @tuckerp | Jun 16 8:50am
In reply to @jlo2252 "My husband replaced our two standard size toilets with two ADA certified toilets. Makes a big..." + (show)
@jlo2252

My husband replaced our two standard size toilets with two ADA certified toilets. Makes a big difference and its just a normal looking toilet. Guess I wasn’t ready to look old either! I’m 74…

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I bought this house i completely remodeled. My wife had me take out the 2 toilets from the previous owner that were elderly. They had the taller toilets. My wife is 5'2" and hated that she could barely touch the floor. She now uses the portable. I guess I should have left them.

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1 reply
linda7 | @linda7 | Jun 16 9:16am

After I got PMR and before I started prednisone I had a scary moment when I could not get off my low toilet. Now I have no problem so I'm keeping it! Same with my low Honda Civic. I would hope no one was watching when I pulled into a parking lot and took 5 minutes to get out. I don't have to go to the gym. I do yard work, have active hobbies and don't make things easier until I have to.

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jlo2252 | @jlo2252 | Jun 16 9:48am
In reply to @tuckerp "I bought this house i completely remodeled. My wife had me take out the 2 toilets..." + (show)
@tuckerp

I bought this house i completely remodeled. My wife had me take out the 2 toilets from the previous owner that were elderly. They had the taller toilets. My wife is 5'2" and hated that she could barely touch the floor. She now uses the portable. I guess I should have left them.

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Oh no, what a shame!!
I know how your wife feels (I have shrunk from 5 ft. To 4 ft 10 inches!). But it is still a lot better for me because of my arthritis in my hips. I really know the difference if I’m at someone’s house or a public restroom with a standard toilet. I almost have to fall into the seat, lol!!

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harelover | @harelover | Aug 4 3:41pm

I've been on Kevzara since mid-February with no side effects whatsoever. I was very reluctant to start because of the potential side effects. I started Kevzara when I was on 10 mg of Predisone and decreased my dosage 2.5 mg per month. I have been off of Predisone totally now for 5 weeks and have had no issues. No adrenal withdrawl or flairs from the PMR. I see my rheumatologist in three weeks and hope to be able to formulate a plan to slowy come off of the Kevzara as well.
For those who are wavering starting this medication I can only say it was a lifesaver for me. I know everyone is different and you have to follow your own instincts but I'm so glad that I finally tried it.

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2 replies
tadatada1 | @tadatada1 | Aug 4 4:38pm

My schedule has been very similar but my legs continue to hurt and and ache pain has settled in my knees . It could be the 20 lbs I gained on 10 mg of prednisone for two years My ankle and legs are now swollen . My knees hurt. The pain is decreased by voltaren gel and dual action Tylenol and aleve. My weight has not decreased at all My closet has as small area of size 12-14 pants compared to my 6-8 previous size. Everything I read says things can take months if it is not immediate which is why I don’t go from doctor to doctor. I did have a second opinion at HSS which I was told I am on the right track. I am on Kevzara 18 weeks. Supposedly at 6 month mark I might need to change treatment. Swelling is not a common side effect on Kevzara

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wilmingtonemperor | @wilmingtonemperor | Aug 5 7:10am
In reply to @harelover "I've been on Kevzara since mid-February with no side effects whatsoever. I was very reluctant to..." + (show)
@harelover

I've been on Kevzara since mid-February with no side effects whatsoever. I was very reluctant to start because of the potential side effects. I started Kevzara when I was on 10 mg of Predisone and decreased my dosage 2.5 mg per month. I have been off of Predisone totally now for 5 weeks and have had no issues. No adrenal withdrawl or flairs from the PMR. I see my rheumatologist in three weeks and hope to be able to formulate a plan to slowy come off of the Kevzara as well.
For those who are wavering starting this medication I can only say it was a lifesaver for me. I know everyone is different and you have to follow your own instincts but I'm so glad that I finally tried it.

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I am so glad that Kevzara worked for you. I know you were hesitant. I loved Kevzara but had to come off because my WBC went down, a known side effect. I now take a non steroid anti inflammatory called meloxacam with no problem. Be well

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1 reply
msmoxsea | @msmoxsea | Aug 5 2:28pm
In reply to @wilmingtonemperor "I am so glad that Kevzara worked for you. I know you were hesitant. I loved..." + (show)
@wilmingtonemperor

I am so glad that Kevzara worked for you. I know you were hesitant. I loved Kevzara but had to come off because my WBC went down, a known side effect. I now take a non steroid anti inflammatory called meloxacam with no problem. Be well

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I have been on Kevzara since last October. It helped me immediately and I was able to taper off prednisone. I never lost the 20 pounds I gained from 8 months of prednisone, still working on that. Not able to walk much since the fatigue was still there. Last week I had to be treated for a severe episode of gout in my ankle so Doc put me on a low dose of prednisone for 1 week. Took my last one this morning. All the swelling in my feet and ankles is gone and I was able to walk and do things around the house. I hope that lasts. Doc says I will be on Kevzara for a few more months and at the one year mark we will try to off it. The only side effect I have had is cellulitis in my arm 3 times. I stayed off Kevzara while I was on antibiotics. It appears it has affected my immune response a lot, but I think PMR does that too. All labs normal except uric acid was 9.1. Hopefully better now and will be on 2 more pills for that. I’m 67 and thankfully retired so I just keep at it. Kevzara was a big help for me especially in the beginning. Best wishes.

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1 reply
DadCue | @dadcue | Aug 5 4:51pm
In reply to @msmoxsea "I have been on Kevzara since last October. It helped me immediately and I was able..." + (show)
@msmoxsea

I have been on Kevzara since last October. It helped me immediately and I was able to taper off prednisone. I never lost the 20 pounds I gained from 8 months of prednisone, still working on that. Not able to walk much since the fatigue was still there. Last week I had to be treated for a severe episode of gout in my ankle so Doc put me on a low dose of prednisone for 1 week. Took my last one this morning. All the swelling in my feet and ankles is gone and I was able to walk and do things around the house. I hope that lasts. Doc says I will be on Kevzara for a few more months and at the one year mark we will try to off it. The only side effect I have had is cellulitis in my arm 3 times. I stayed off Kevzara while I was on antibiotics. It appears it has affected my immune response a lot, but I think PMR does that too. All labs normal except uric acid was 9.1. Hopefully better now and will be on 2 more pills for that. I’m 67 and thankfully retired so I just keep at it. Kevzara was a big help for me especially in the beginning. Best wishes.

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"All labs normal except uric acid was 9.1. Hopefully better now and will be on 2 more pills for that. I’m 67 and thankfully retired so I just keep at it"

Interesting ... I have this problem too. My endocrinologist thinks a high uric acid level is consistent with metabolic syndrome from long term prednisone use.
https://www.frontiersin.org/journals/medicine/articles/10.3389/fmed.2022.1039230/full
and
https://www.rheumatologyadvisor.com/news/corticosteroids-linked-to-increased-metabolic-syndrome-risk/
--------------------------------
I was treated because of a kidney stone composed of 80% uric acid and the possibility that gout was contributing to my symptoms. I took allopurinol for a year and my uric acid level normalized. I didn't feel any different so allopurinol was stopped. My uric acid level was rechecked recently and it was high again. I still don't feel any different so nobody seems to know what to do about my uric acid level.

My endocrinologist is working on metabolic syndrome. My weight is decreasing but not as quickly as I hoped when Prednisone was stopped 3 years ago. Prednisone side effects are hard to reverse according to my endocrinologist.

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1 reply
sandiw77 | @sandiw77 | Aug 6 4:23pm
In reply to @dadcue ""All labs normal except uric acid was 9.1. Hopefully better now and will be on 2..." + (show)
@dadcue

"All labs normal except uric acid was 9.1. Hopefully better now and will be on 2 more pills for that. I’m 67 and thankfully retired so I just keep at it"

Interesting ... I have this problem too. My endocrinologist thinks a high uric acid level is consistent with metabolic syndrome from long term prednisone use.
https://www.frontiersin.org/journals/medicine/articles/10.3389/fmed.2022.1039230/full
and
https://www.rheumatologyadvisor.com/news/corticosteroids-linked-to-increased-metabolic-syndrome-risk/
--------------------------------
I was treated because of a kidney stone composed of 80% uric acid and the possibility that gout was contributing to my symptoms. I took allopurinol for a year and my uric acid level normalized. I didn't feel any different so allopurinol was stopped. My uric acid level was rechecked recently and it was high again. I still don't feel any different so nobody seems to know what to do about my uric acid level.

My endocrinologist is working on metabolic syndrome. My weight is decreasing but not as quickly as I hoped when Prednisone was stopped 3 years ago. Prednisone side effects are hard to reverse according to my endocrinologist.

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Thanks so much for sharing your experience. Sad to hear that Prednisone side effects don’t just disappear as I have been hoping. 😂🤣 Hoping that something will get me off of Prednisone soon as I wait on test results and approvals. Blessings!

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