I've had PMR since March 2019. Now tapering slowly to 4.5mg. My neighbour is about to start Biologics for a severe auto-immune chest complaint and asked if PMR was treated this way. I said no.....and then Googled it.
I found this from the US in Feb 2023:
KEVZARA® (SARILUMAB) APPROVED BY FDA AS FIRST AND ONLY BIOLOGIC INDICATED FOR PATIENTS WITH POLYMYALGIA RHEUMATICA
Three times more patients treated with Kevzara achieved sustained remission compared to placebo in Phase 3 trial.
Has anyone else heard of this? It would be good to know that one day there might be a better treatment than steroids with all the side effects. Although this drug will also have its own side effects no doubt.
Written by
HelenDaisy
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Yes, it has been discussed before and there are related posts- but as we are in UK and knowing how difficult it is to get Actemra for GCA don’t hold your breath…
I asked Prof Sarah Mackie in Leeds if she thought it was likely to be aproved for PMR since the rules for Actemra for GCA are ridiculous - only for relapsing cases and limited to a year which simply isn't long enough (it is available without limit if you have RA) and she expressed the opinion she didn't see it happening without a major change in attitudes on the part of her colleagues.
Apart from anything else, it will cost a small fortune - pred is cheap as chips.
Humira was a similar cost to Actemra but since it is out of patent the cost has plummetd - according to my rheumy it is now about 800 euros a year here. I would happily pay that myself.
a dose every 2 weeks at $4300 a single shot. $8600 a shot...and it only deals with IL-6 so still might not be a cure all for all PMR patients. Though it is all rather hypothetical considering the cost.
I am on Actemra in the UK thru the NHS .....instead of steriods as I have mentioned before on here. Has helped a lot, I am told I am going into remission ....I have another 6 months on it and then will know whether it has done the trick or not ...........
There isn't a cure - why can't they tell the truth. It is a better steroid sparer, it doesn't cure. Nor is it £10K per patient - it is £10K PER ANNUM and they can't say you will be permanently off it in a year. It is just a different version of tocilizumab/Actemra and that isn't a cure, I have been on it for well over a year for PMR (because I don't live in the UK) and I'm still at 5mg pred. In GCA these IL-6 antagonists only get half of patients entirely off pred - because there are at least 3 underlying possible causes of the inflammation, these biologics are so specific they only work for one of them. The other two need pred or another drug which they haven't got.
DON'T tell patients "there is a cure for £10K" - there are people who would spend that privately only to find it isn't true.
Sorry I didn't mean to upset or offend. And I'm only saying what I was told. That's probably it for responding to posts now. I didn't mean to mislead and Ill stop responding to posts now as I've clearly been told off. I'll remove the post
I realise it is too late for you, you have left so won't see this. I wasn't telling YOU off, I was saying the doctor shouldn't tell patients that, it is incorrect.
They don't necessarily have a lasting effect on the immune system. Tocilizumab/Actemra, for example, occupies the receptors that the cytokine IL-6 need to join up with to create the inflammation. It does affect the B and T cells but how much effect it has varies.
But they are used to suppress the immune system which is overactive or deranged to prevent the resultant damage due to the illness. The main problem with pred is the list of potential adverse effects which is longer than most biologics!
PMR for 20 years, GCA over 12. Prednisone last 13 years, down to 5mg. per day. Actemra shots at home for a year. Shots did not work well. Also, Medicare in the US will pay for infusions, but not for the weekly shots. So, two years ago I started infusions of Actemra. Actemra has given me some stability in my life. Most of the weird symptoms, foot problems, stomach problems, odd depression, associated with GCA are gone. I still have an elevated SED and was told by rheumatologist I would need 5mg of pred the rest of my life, at least I have a halfway normal life. I tire easily and can't exercise, but at least I am not in horrible pain. It is my opinion from my experience that the damage caused by high doses of prednisone coupled with the damage caused high levels of systemic body inflammation are worse than the risk of Actemra. My sores heal quickly so I am guessing my immune system is not totally compromised. Actemra keeps the wolves at bay so to speak, but barely.
I am having issues with my kidneys GFR down to 39 with blood and protein in urine. I see a nephrologist as soon as they can arrange it. I was told that the Actemra had nothing to do with the kidneys. I have had resistant hypertension for several years. So, am guessing that may be a partial cause. I also have MGUS ( a protein in my blood), and the inflammatory response of PMR/GCA can damage the kidneys.
From my experience one of the biggest mistakes the medical world makes is believing the inflammatory response of PMR/GCA is isolated in specific parts of the body. the illness is systemic. The inflammation can attack anywhere. Foot problems, gone on Actemra. Stomach problems: Off of all stomach meds for first time in decades. Weird depression that feels like one is viewing the world through a haze; gone. Wrist pain, gone. Hip pain, shoulder pain; I still deal with those. Chronic kidney disease; an ongoing issue.
Actemra does not always help. There are 3 different cytokines that can cause our illness. One of those is Interleukin-6. Actemra works on the Interleukin-6.
For me: Actemra gave me some stability so I could live a half way normal life.
Yes. I live in the US . Started on prednisone 20 in January and not able to taper . Have had 5 dose of Kevzara and tapered down to 15.5. No side affects . Feeling some stiffness and pain in neck,and shoulders but an extra strength Tylenol helps me get thru it
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