Hello all,
I watched a YouTube video on PMR, it mentioned this new drug on the market for PMR. It was approved here the US last year 2023. Bay The FDA ( Federal Drug Administration) meaning they obviously ran loads of tests before it could go on the market. Has anyone else heard of this?
The drug Sarilimab, another drug mentioned was Tocilizumab which ink test proved effective with newer patients. I will check with my doctor,
There re are related post re Sarilumab /Kevzara and a few of your compatriots are already on it…
Thank you, probably a bit late for me to start switching drugs..
Depends what dose you are on, but as you were on 5mg a few months, I doubt it’s worth it to be honest.
That’s what I thought, this weekend I will taper to 4.5, tricky waters ahead..
We have - and there are many posts about it. Both tocilizumab (Actemra) and sarilumab (Kevzara) have been used for rheumatoid arthritis for several years so are not new, just repurposed biologics. They both work on the same inflammatory substance, IL-6, which means they will work for half of patients to get off pred entirely but half of us have other underlying causes of the inflammation as well so may still some pred.
But it isn't a cure - it is a very expensive steroid sparer at a cost of $15,000 a year. As usual, there are payment coupons for some people in the USA while the medical systems in the rest of the world have to pay the full cost so most of us don't get it.
My rheumatologist is in the process of getting approval for me using Kevzara. I had a PMR flare and had to increase prednisone (now slowly reducing to 12.5) so she thought that a biological was my best option. Mayo Clinic had said a similar thing, that if I had to increase the prednisone using a biological would have to be re-visited. A t the time I was at 5 mg. ……. I was concerned about the Kevzara because I have some underlying GI issues. This week I had an appointment with my GI dr. He thinks it would be a good fit for me as it also works well for Crohn’s disease of which mine is acting up.
It never seems to occur to them that slower tapering is a cheaper and often just as effective option!! Of course patients flare when they are forced to taper in large steps or quickly - you aren't reducing to zero, you are titrating the dose. A very different thing.
Hello, Southmead. I live in New Mexico and the NP in my rheumatologist’s office suggested Kevzara as I was tapering off Pred but still experiencing stiffness and soreness. My tapering schedule began with a month on 15mg followed by a decrease of 1 mg every 30 days. I have been off pred since June, managing with 200 to 400 mg of ibuprofen per day. I realize this isn’t ideal, but am reluctant to take a biologic until there is more data on PMR patients.
As you read more from this wonderful community you will note the doctors in the UK have a different view of prescribing prednisone. They don’t attempt to wean patients off pred in 15-18 months. There are members here who have been on a low dose of pred for years. My rheumatologist is reluctant to put me back on Pred which is frustrating since I know it would be better than ibuprofen, however Kevzara seems like a drastic step since my level of pain is low, but soreness/stiffness hinders my quality of life - there are beautiful mountains to hike!
I spoke with my GP and we are monitoring my labs for CRP, liver, and kidney function every 3 months. If needed, she rather than the rheumatologist will prescribe more pred.
Good luck on your journey, and if Kevzara works well for you please share your experience.
Personally, I'd prefer a low dose of pred to daily ibuprofen given its longer term adverse effects - and here the pain clinic doctors don't twitch at pred but are very averse to using NSAIDs because of the risk to cardiovascular and renal systems. The long lasting low level of inflammation increases the risk of all sorts of nasties - including cancers.
The Bain and savior that is prednisone. This year is 10 years for me, I can never seem to get below 5mg, yet once again here I am going to 4.5mg next week on my current taper. I know we are all different. I’m not in pain perse. Like all of us, the ongoing stiffness and fatigue battle. I think I will give Kevzara a miss, and continue the taper. I can’t hike like I used to, we all suffer in different ways. Thank You.
At this stage of the year - why not wait until the whole holiday season is done and dusted? At this level, adrenal function and stress don't mix well. Especially if it is cold as well.
Southmead, I wish you all the best with your taper. I will get labs done mid week and an appt with NP on 12/17, will see where I go from there, it is certainly a different journey for us all. One thing that has brought great relief is a warm water pool at my local community college. I go 3 times a week. It's helpful to keep moving however we do it. Take care!
Thank you, it’s quite a journey this PMR that none of us chose to be on. I don’t know what I would have done without this support group, so very thankful for that. Good luck to you..
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