Kevzara (sarilumab) to treat PMR
I am 54, diagnosed with PMR June 2022 but symptoms started Nov 2021. I have tapered Pred to 8mg and most days my pain is around a 2 or 3 out of 10. Reasonable, I felt for active PMR and I'll take Tylenol Arthritis to help with pain if needed. But, my Rheumatologist wants me off Pred ASAP. He wants me to take Kevzara and says studies have shown that it gets rid of PMR and the drug should be approved to treat PMR by this spring. Has anyone been part of the trials and/or had experience using this drug to treat PMR?
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Hi @hfoster, You mentioned being diagnosed with PMR in June 2022 which is not too long being on prednisone. Tapering down to 8 mg prednisone after only 5 or so months seems pretty fast depending on what dosage you started at. I started at 20 mg for both of my occurrences of PMR . First time took 3-1/2 years to taper off, the second time 1-1/2 years but I made some lifestyle changes to help with the inflammation, more exercise and improved diet.
@martiesowers and @lmoross have posted about Kevzara in another discussion and may have some experience or thoughts to share with you. Also, I found this recent study on the drug along with the link to the clinical trial:
— Sarilumab shows treatment promise in relapsing polymyalgia rheumatica:
— Evaluation of the Efficacy and Safety of Sarilumab in Patients With Polymyalgia Rheumatica:
Thank you so much, John. Yes, I think the taper has been too fast as well and I was only on 15mg to start for 1 week before he dropped me to 10mg. I have learned a lot more over the last few months since then and have slowly tapered from 10mg. I'm at 8mg and about 80% myself and not wanting to increase Pred dose, so I've been just dealing with the pain and stiffness. The big problem is my Rheumy, the prescribing doc, wants me off Pred ASAP because he feels at 54 I am too young to have PMR. He thinks it's really RA and its symptoms are masked by the Pred. A couple of inflammatory markers were slightly elevated but nothing near what RA patients typically have. I also don't have joint pain other than my shoulders – it's in the muscles/tendons. He and I disagree on this point. His answer is Kevzara, which I'm trying to find out more about before I agree to try…going in with all the research I can this time!
Hi @hfoster I’m the process of being diagnosed myself with PMR and I am also 54. My rheumatologist also feels I am quite young and she has had patients who are young presenting like they had PMR but it was mimicking RA. She has ordered a full PET scan on me to rule out anything else before starting me on prednisone. I also don’t have pain in fingers, toes etc – pain in hips and down back of legs and now developed in my shoulders and neck.
I was wondering how many ‘young’ people in this group have been diagnosed with PMR as well.
I'm sorry you're on this journey. Isaw a poll that one of the Facebook PMR sites did asking what age symptoms started. There were a ton of people in their 50s. I think covid has played a part. My Dr said I should be happy if it turns out to be RA…. so many meds approved that get rid of the pain. I'm not convinced though. Everything I've experienced is classic PMR. I'll be getting a second opinion next month. Best wishes in your journey.
Hi @michwest, I would like to add my welcome to Connect along with @hfoster. My first occurrence of PMR was when I was 64 and 54 does seem a little young. From what I've read it mostly occurs in adults over the age of 50 but there have been occurrences at younger ages.
"Can you get PMR in your 40s?
Since PMR can develop in mid 40s, a high index of suspicion is necessary in younger patients presenting the bilateral pain in shoulders, hips, and back, with elevated acute phase reactants."
— Early onset polymyalgia rheumatica: two rare cases under age of 50:
It's good that your doctor is checking for other conditions as there are conditions that mimic PMR. Not sure if you have seen this one but it's an easy read and might be helpful:
— Diseases that mimic polymyalgia rheumatica (PMR):
Were your erythrocyte sedimentation rate (ESR) and C-reactive protein (CRP) levels high?
I agree with you. I suspect my PMR was triggered by a "mild" case of Covid. I also think statistics will show a large increase in PMR as a result of the Covid virus. Of course, I may not be around to see the results of these statistics!
Best of luck to you.
Thanks @hfoster yes it’s all a bit overwhelming at the moment. I have been a very active person – runner etc so this has been tough to deal with as I have pain even putting clothes on. Yes you have to wonder if covid has played a part. Like you I’m not sure if RA would be a better diagnosis. Anyway one day at a time. Hope you feel better soon.
Thanks @johnbishop i appreciate having this group to connect with. My ESR was normal and my CRP levels have been rising so will see what this next round of blood work reveals and then the PET scan.
It’s all a bit overwhelming as I said to @hfoster i was a very active person 3 months ago and now struggle climbing stairs or walking up a hill which is not like me whatsoever. I will read as much information as I can and again I so appreciate this group – thank you.
Thank you. Same to you. I remember how awful it was in the first few weeks and months. It sounds like you've gotten to a good Dr. early. What a difference that makes. It took me 8 months and lots of misdiagnoses along with 6 doctors before I started treatment. As you are researching, check out this site: https://healthunlocked.com/pmrgcauk
It has been really helpful. Also, there is a book on PMR that has a good summary of research and experiences: Kate Gilbert's Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide. 2nd edition. Will be interested to hear how your PET scan goes. That was never offered to me but wondering if I should get it to confirm my diagnosis and ensure I'm getting the proper treatment. It does get so much better once you start Prednisone. Hope you get some relief soon.
I have bee treated with Kevzara for several months. It has allowed me to reduce my methylprednisone and I am completely with off it now with no flair of PMR. I just had to stop it because my white blood count dropped. I continue to take the methotrexate injections weekly and am starting to reduce them now. I really don't know what specifically took my PMR symptoms away but I feel really great now. Doctor does not want me to restart the Kevzara until my white blood count improves.