My Dr. wants me to start this medication for PMR and arthritis.
I was surprised because I don't think there were any medications for pmr other than prednisone.
As with all of these meds. the side effects listed are horrendous.
If anyone knows anything about Kevzara please let me know.
My last attempt at decreasing the pred. hasn't gone so well.
I am down from 25mg last June to 7 mg. Then Everything went badly and I had to go back up to 10 mg this past month.
Thanks for any responses.
Don't you just love predictive text!
Kevlar might be bullet and knife proof - but not sure it’s any use in PMR.
There are some posts on Kevzara -,but it’s not used in UK, so replies may be limited - here’s a couple to start you off, but suggest your you type Kevzara into search facility- I did find a few
healthunlocked.com/pmrgcauk...
healthunlocked.com/pmrgcauk...
I did wonder!
😊 some might say anything is worth a try..,
I think you mean Kevzara, not Kevlar which is a fibre made into protective textiles! Ah - I see the title is wrong, the text of the post correct!!! If you correct the title it may bring up relevant posts as there are a few people in the USA on it. It isn't approved in the UK yet and it is thought it is unlikely to be in the near future.
I am on Actemra for PMR - same effect but by a different mechanism. It has got me from 19mg pred to 7mg. However, I wouldn't have tried it if I'd already been at 10mg after barely a year - I'd keep trying to taper as you did before. You aren't heading relentlessly for zero - you are looking for the lowest effective dose and I would suspect that all that happened was you overshot the dose you need a bit and really 7.5mg would work. Even half a mg too low will let in a flare.
Kevzara is a biologic medicine that works by blocking IL-6 levels to reduce RA inflammation. I am not sure how well it has done for people with PMR.
investor.regeneron.com/news...
It is the first biologic approved by the FDA for PMR
people seemed quite positive when it was announced. A bit of a one day wonder perhaps.
Hi, I’d give my right arm for this drug but can’t get it in the UK for PMR. I’ve had plenty of other similar drugs though without any issues. You’ll be closely monitored and most people don’t get any side effects at all. Good luck!
Thanks for the reply. I am going to try it but there are many tests and vaccines that are needed before I can start. Not looking forward to taking the shingles vaccine. Also have to be checked for TB. Rate of infection is a concern while on this drug
That's the problem with autoimmune diseases: treatments that suppress the immune system risk opening the way for infections. Here's a short article about Zevzara (sarilumab).
I’ve been on these drugs for over ten years. The only infection I’ve had is a tooth abscess which may or may not have been there anyway. Yes the tests are a pain but very necessary. I’ve has the shingles vaccine too and had no ill effects from it.
I am in USA started taking Kevzara 6 months ago other than some injection site bruising (Kevzara is thick) I have had no side effects to speak of I am down to 5.5mg prednisone I was stuck around 10mg for months my methotrexate had also been reduced I have actually had some “old me” days lately…
That is wonderful to hear. Did you need to have certain vaccines before you started it?
Hi Linny3,
I’m new to this group and noticed you posted 2 months ago. Did you begin Kevzara? Are you getting relief from it? I’m in New Mexico and my rheumatologist is now recommending I try Kevzara. I was on a tapering schedule with Pred beginning at 15mg and reducing 1 mg each month. (I’ve noticed many on this site have much longer tapering schedules.) Been off Pred for 2 months and now using 200 - 600 mg of ibuprofen a day, trying not to take more due to potential kidney/liver damage. My quality of life has been reduced so am considering Kevzara. Would love to hear how you are doing on it.
Thank you,
Kelly
Hi and welcome,
Would say much too fast a reduction [as you have discovered]. Using ibuprofen as you are is really not good…can do a lot of damage, to stomach as well as liver/kidneys.
Even with Kevzara you probably need to go back in Pred initially to get your PMR back under control… maybe not as high as 15mg.
Thank you, when I mentioned gong back on pred to the nurse practitioner she said the Kevzara would be better. See, I just don't have confidence in this office. I'm seeking an appt with another rheumatologist for a second opinion. I am cautious not to take more than three 200 mg right now.
Well many in here would say a small dose of Pred (say 5mg) is safer than ibuprofen-and not sure anyone can say Kevzara would be better than Pred.
Think you are wise going for another opinion.
Thank you, I feel the same way. Didn't understand why a low dose like 5mg, when it was working beautifully wouldn't be better. I've scheduled a telehealth visit with my old primary care doc who was the first to suspect PMR. I saw her for almost 15 years and I trust her. I appreciate your reply!
If you were doing fine on 5mg pred then that is good. There would be no real justification putting you on Kevzara at this stage other than it is available and ibuprofen instead is very poor medical care. Kevzara is very new, it is a biologic with quite hefty potential adverse effects and there isn't that much info on the longer term adverse effects. The one very good thing about pred is that there is not very much still to be learned about it after 60+ years of use. A low dose is possibly equally as safe and maybe safer than the new stuff they haven't used before. And pred is a miniscule fraction of the price! If all of us were switched to Kevzara, the public health care systems would collapse and the cost of medical insurance in the USA would rise even further!
I completely agree with you. I’ve decided not to begin a course of Kevzara. My symptoms, quite honestly, are manageable. For some reason the rheumatologist and NP are reluctant to put me back on Pred. After reading accounts of many in this group who have been on it much longer, I don’t understand the hesitation of a low dose, it will address this with them.
They are scared of pred, educated to be so and it perpetuates the myth. I've been on pred for over 15 years - hasn't killed me yet and it has given me a life back. I'm on 7mg even with Actemra which is similar to Kevzara and can't get lower without problems. So since I am stable at that - rheumy is happy!!
Thank you for this. I have a 10/21 telehealth appointment with my-long-time primary physician in another state whom I trust implicitly and believe she will ok low dose Pred for extended time.
On another note, regarding non-pharmaceutical methods to help with pain/stiffness, I wanted to mention I am fortunate there is a warm water pool in my community. The 91-93 degree water is a wonder. Myself and other older ladies with various muscle, joint and general aches and pains find it restorative. I go at least 3x a week for a gentle, low-impact exercise. I met a Qi Gong practitioner there who has RA and have started classes with her for more exercise.
Wishing all here patience and perseverance as we navigate the PMR and autoimmune world. Thank you for this community. ~Kelly
I did aquafit in the UK all the way through the years I had PMR and no pred - only thing that kept me mobile! When I moved here there was no such option and I really missed it. Had to be warm water though - if the boiler was playing up I got straight out again!
No I haven't started. They required that I get two shingles shots first and that takes a little over two months. I probably will start in november or december. Good Luck
Ah, I had labs run for TB and hepitatis. Was cleared to take Covid booster and flu shot, but didn't ask about shingles. My CRP was 11.1, but had not taken ibuprofen for almost 48 hrs prior to blood work to get a true reading. These autoimmune disorders are a rollacoaster, I wish you all the best!!
Anyone have a sibling who had/has PMR? 
Has anyone else read ..PMR why me ?
Has PMR gone?
Has anyone else had PMR pains affect their knee joints?
PMR for 2.5 years tapering
