1. < Polymyalgia Rheumatica (PMR)

Does Kevzara put PMR in to remission?

Posted by besmith57 @besmith57, Apr 26 7:28pm

I was diagnosed with PRM in February of this year. I think I have had it much longer. I had a double spine fusion in 2021 and the pain never really went away. Once I started prednisone my back pain went away along with the terrible body pain. I tried weaning from my initial dose down to 5 mg but my rheumatologist just increased me to 7.5mg along with methotrexate 10mg a week. (this was my second dose today) She wants me at 7.5mg for 3 weeks and then wean to 5mg. I still have pain at the 7.5mg. I had bad osteoporosis that with Tymlos brought me back to osteopenia. My doctor wants me off steroids as soon as possible but the pain is terrible at low doses. Because of my brittle bones, I don't want to be on steroids either. She said if the methotrexate doesn't work she would like me to try Kevzara. I've been reading the discussions on this site (which I love!) and googling the drug but I haven't seen an answer if the Kevzara would put me in permanent remission. I have had such bad pain for over three years from the two broken vertebrae and now PMR. I just want my pain-free life back. I have missed so many things because of the pain. Does anyone think the Kevzara would give me my life back?

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

2coolbaby | @2coolbaby | Aug 12 4:12pm

I’ve had PMR for 15 years, on prednisone for 5 years now. Prednisone never got rid of my pain or inflammation or high sed rate, but it reduced all of those. Until they tried to wean me and every mg down shot my pain levels and test results through the roof. Even with methotrexate.

I was prescribed Kevzara about 2.5 months ago. It’s been a wonder drug for me. My pain levels have reduced drastically. Unfortunately I also have fibromyalgia, so need to get that treated to accurately see where the PMR levels are. But I have normal C-RP and Sed Rate for first time in 15 years! My liver enzyme reading is slightly elevated, but not much and they say it doesn’t damage liver and readings go back to normal if you discontinue.

I haven’t had any other side effects and I’m weaning down on my prednisone slowly but surely. I’m hoping I get off completely. I’ve been on it way too long and I have a lot of health issues from the years of inflammation and prednisone use.

For me Kevzara is a wonder drug and if I have to be on it for life, then so be it unless something big changes for me.

REPLY
2 replies
besmith57 | @besmith57 | Aug 12 4:48pm
In reply to @2coolbaby "I’ve had PMR for 15 years, on prednisone for 5 years now. Prednisone never got rid..." + (show)
@2coolbaby

I’ve had PMR for 15 years, on prednisone for 5 years now. Prednisone never got rid of my pain or inflammation or high sed rate, but it reduced all of those. Until they tried to wean me and every mg down shot my pain levels and test results through the roof. Even with methotrexate.

I was prescribed Kevzara about 2.5 months ago. It’s been a wonder drug for me. My pain levels have reduced drastically. Unfortunately I also have fibromyalgia, so need to get that treated to accurately see where the PMR levels are. But I have normal C-RP and Sed Rate for first time in 15 years! My liver enzyme reading is slightly elevated, but not much and they say it doesn’t damage liver and readings go back to normal if you discontinue.

I haven’t had any other side effects and I’m weaning down on my prednisone slowly but surely. I’m hoping I get off completely. I’ve been on it way too long and I have a lot of health issues from the years of inflammation and prednisone use.

For me Kevzara is a wonder drug and if I have to be on it for life, then so be it unless something big changes for me.

Jump to this post

I'm so glad that kevzara is working for you. I have been on it for 3 months and don't really feel any different. I just hope it gets me off prednisone. My pain level is mostly manageable. I'm taking 4.5 mg now and hope to taper to 4mg on Friday. Congratulations!

REPLY
karo89135 | @karo89135 | Aug 13 11:10am
In reply to @2coolbaby "I’ve had PMR for 15 years, on prednisone for 5 years now. Prednisone never got rid..." + (show)
@2coolbaby

I’ve had PMR for 15 years, on prednisone for 5 years now. Prednisone never got rid of my pain or inflammation or high sed rate, but it reduced all of those. Until they tried to wean me and every mg down shot my pain levels and test results through the roof. Even with methotrexate.

I was prescribed Kevzara about 2.5 months ago. It’s been a wonder drug for me. My pain levels have reduced drastically. Unfortunately I also have fibromyalgia, so need to get that treated to accurately see where the PMR levels are. But I have normal C-RP and Sed Rate for first time in 15 years! My liver enzyme reading is slightly elevated, but not much and they say it doesn’t damage liver and readings go back to normal if you discontinue.

I haven’t had any other side effects and I’m weaning down on my prednisone slowly but surely. I’m hoping I get off completely. I’ve been on it way too long and I have a lot of health issues from the years of inflammation and prednisone use.

For me Kevzara is a wonder drug and if I have to be on it for life, then so be it unless something big changes for me.

Jump to this post

Hi 2cool,

Wow, that’s wonderful news. Had my first injection yesterday. Have PMR for 8 years and take 10 mg prednisone currently. Had high doses of prednisone, methotrexate. They all helped but had terrible headaches with methotrexate.
Was wondering if you have injection site bruising and redness? Mine is quite significant. Any suggestions?

REPLY
1 reply
karo89135 | @karo89135 | Aug 13 11:21am

Hi bsmith57,

I can’t believe how much of this PMR is out there. If this helps, the methotrexate did help my hand and finger pain, but not the hips, neck and shoulders. My wonderful pcp has prescribed me pain medication which I take sparingly and only when the day is impossible. Kevzara might be helpful but you won’t know unless you give it a shot. Forgive the pun.🥰
It definitely does a number on your psyche and I am so thankful for this site!
Good luck. Keep us posted.
Karo

REPLY
marci516 | @marci516 | Aug 14 7:46am
In reply to @karo89135 "Hi 2cool, Wow, that’s wonderful news. Had my first injection yesterday. Have PMR for 8 years..." + (show)
@karo89135

Hi 2cool,

Wow, that’s wonderful news. Had my first injection yesterday. Have PMR for 8 years and take 10 mg prednisone currently. Had high doses of prednisone, methotrexate. They all helped but had terrible headaches with methotrexate.
Was wondering if you have injection site bruising and redness? Mine is quite significant. Any suggestions?

Jump to this post

I ice the area before & after my injections. I’ve given myself 5 & so far ,thankfully no issues.

REPLY
1 reply
karo89135 | @karo89135 | Aug 14 12:36pm
In reply to @marci516 "I ice the area before & after my injections. I’ve given myself 5 & so far..." + (show)
@marci516

I ice the area before & after my injections. I’ve given myself 5 & so far ,thankfully no issues.

Jump to this post

Hi Marc,
That's great news for you. I can deal with the site bruising but had second terrible headache this morning. 2 doses of sumitriptan helped. 3 calls to doctor's office and no reply. Call center said to continue with the second injection...might have to discontinue. I do get headaches but these were incapacitating.
Did it help your pain?
Thank you for your reply.
Karo

REPLY
1 reply
marci516 | @marci516 | Aug 14 4:37pm
In reply to @karo89135 "Hi Marc, That's great news for you. I can deal with the site bruising but had..." + (show)
@karo89135

Hi Marc,
That's great news for you. I can deal with the site bruising but had second terrible headache this morning. 2 doses of sumitriptan helped. 3 calls to doctor's office and no reply. Call center said to continue with the second injection...might have to discontinue. I do get headaches but these were incapacitating.
Did it help your pain?
Thank you for your reply.
Karo

Jump to this post

Karo,
So sorry to hear about your headaches, I haven't experienced those although I do get headaches. My only side effect is I'm very tired the day after my injection. I inject at night. I can only work a few hours remotely, the next day, then need to rest.
I started icing at the beginning, read this on another PMR site & never had any issues. I'm lucky, the hospital pharmacy that sends my Kevzara has pharmacists available to answer questions & my doc responds to messages.
Hoping you have better luck.
Marci

REPLY
1 reply
karo89135 | @karo89135 | Aug 14 5:50pm
In reply to @marci516 "Karo, So sorry to hear about your headaches, I haven't experienced those although I do get..." + (show)
@marci516

Karo,
So sorry to hear about your headaches, I haven't experienced those although I do get headaches. My only side effect is I'm very tired the day after my injection. I inject at night. I can only work a few hours remotely, the next day, then need to rest.
I started icing at the beginning, read this on another PMR site & never had any issues. I'm lucky, the hospital pharmacy that sends my Kevzara has pharmacists available to answer questions & my doc responds to messages.
Hoping you have better luck.
Marci

Jump to this post

Hello again Marc,

I will try that. I have found the pharmacists are wonderful too. The methotrexate gave me a headache too but nothing like the Kevsara, also the malaise. It took about 2 days to feel well again. Did I mention a fever of 99.8 about an hour after Kevsara injection. Doctor finally returned my call and said do the next injection with antihistamine and thinks the same side effects might not happen again. You are indeed lucky your doctor replies to you. I now have a portal to communicate so shall see how that goes.
Sorry for your work disruption. I retired years ago so thankfully that’s one less thing to worry about. All set for the golden years! Haha. Anyway, best to you.
Karo

REPLY
View MoreView Less
Please sign in or register to post a reply.