I doubt there are many on it as yet - there aren't that many US members and that is the only place it is approved. It is an IL-6 inhibitor so similar to tocilizumab/Actemra and there are a few on the forum on it for PMR, again not many as it isn't approved for PMR anywhere.
I have had PMR for 18+ years and started on 15mg of pred 14 years ago with a relief of symptoms in 6 hours. It took me 4 years to get reliably below 10mg and got to 4mg about 7 years ago before a massive increase in disease activity took me back to 15mg and then I was unable to get lower than about 12mg. Just before Covid my husband became very ill and he died 20 months ago - during his illness I was sole carer and needed 15mg to function. A few months after his death I had a massive flare despite 19mg. My rheumy put me onto Actemra - and in the 14 months or so since I have been able to get down to 5mg, albeit with a couple of hiccups.
My rheumy advised waiting a couple of months before starting to reduce - the biologics don't work instantly whatever some doctors think and if you needed xmg pred you are likely to need it for a bit longer. He also advised tapering slowly, 1mg at a time. It has worked well and I'm very pleased so far,
I doubt that Kevzara will be significantly different - I drop 1mg when I feel ready and if it doesn't feel right I go back and try again after a few weeks, Now I'm in the adrenal function dessert, especially after so long. I had a busy and stressful day yesterday and felt a bit ropey in the evening, worse this morning, with all the signs of a potential adrenal crisis, The symptoms were mainly of low blood sugar so I rectified that and felt rather better. There isn't really a fixed pattern, even with the Actemra. It is a new world and you have to tread carefully - no magic.
I’ve been taking Kevzara for a couple of months now.
Diagnosed with PMR a year ago, initial prednisone dose of 45mg. I had tapered down to 7mg over 11 months before starting on Kevzara. Rheumatologist recommended a taper that would have me off of prednisone entirely after my first month of Kevzara. I found this to be overly aggressive due to various aches and lack of energy, but I have managed to taper down to 1 mg since May. My energy level and aches fluctuate….some days I feel almost normal again and others not so much. I will stop taking prednisone entirely next week and see if my body can handle it
I was a relatively healthy 51 year old male last summer when this all started. Began having severe temperature spikes, night sweats, and tremors. Blood test results showed Sed rate of 63 and c-reactive of 303.3. I spent a couple of weeks in the hospital with no relief until a massive IV steroid infusion. My rheumatologist diagnosed PMR shortly thereafter. No cause was ever determined.
My Sed and CRP levels had been slightly above normal ranges even with the prednisone, but after the first month of Kevzara they both went to 0. At this point I hope that all my issues are due to the prednisone taper. My cortisol level is at the very bottom of the normal range, so hopefully my adrenal function is taking back over.
I’ve lurked this forum for a few months and the information has been so helpful, thanks to everyone who contributes.
Remember though that the sed rate and CRP are low because of the way Kevzara works, not because the underlying autoimmune disorder is now inactive. Both Kevzara and Actemra are IL-6 antagonists and interfere with the receptors although in different ways.
Can you elaborate on this please? My rheumatologist prescribed Kevzara due to prednisone side effects I am experiencing (weight gain, pre-diabetes, etc). Is it likely that Kevzara will not eliminate all of my PMR pain and fatigue, and I will need to continue taking prednisone as well? I know that all of our individual PMR experiences are unique but curious if this is generally the case.
Impossible to say at present, In the case of tocilizumab, half of GCA patients were unable to get off pred entirelyl, they continued to require a much lower dose of pred to stop flares. This is because the biologics are extremely specific and GCA has at least 3 underlying causes for the inflammation so the non-IL-6 ones aren't controlled by the drug. Pred wipes up pretty much everything. It very much depends what mechanisms create the inflammation in PMR and if there some that aren;t IL-6 related, Kevzara is unlikely to be 100% successful.
If you are having weight and pre-diabetes problems, they can both be improved considerably, sometimes avoid altogether, by cutting carbs drastically, especially processed carbs in your diet, Pred makes the liver release spikes of glucose into the blood stream from the body stores and that contributes to both problems. You can't control that effect but you CAN reduce the contribution from diet. Some of us have to get to very low levels of carbs, practically keto, but it does work. I have never had a raised Hba1c and lost 35lbs in weight while on 10-15mg pred. I/m not the only person with such a story.
I am still using Kevzara after 1 1/2 years. My last prednisone was Dec 31 2023. It took months for my body to re-establish its equilibrium post prednisone. Lots of aches and pains that would be here for a short while then gone as sudden as they appeared. Went thru a bout of lower leg/ankle swelling but that is now gone. I still have aches in my thighs, knees, feet/ankles and hands from time to time which seems to be diet and weather dependent. I walk or exercise most days and find my aches lessen with movement. This past summer I cycled regularly 25 to 35 km per outing in addition to my walking. I go by the saying,"They don't leave race horses in the barn. Its move or to the glue factory"
Overall, considering I am 83, I think I am doing ok.
I am glad you are doing well with an excellent exercise tolerance. Did you experience any symptoms of adrenal insufficiency at low prednisone dose? I was unsure how long Kevzara continued after prednisone discontinuation. I am blessed to reside in US where Kevzara is approved for PMR.
My guess is when you go into some sort of remission which you will not by fewer aches and pains near reinjection time or your med plan does not approve more.
No argument about when it is no longer paid for! But remission is defined as absence of symptoms - and that should be achieved pretty soon with Kevzara. However, that is a long way from the disease process having burnt out and gone into full remission where you no longer need medication to keep the inflammation under control. Because neither pred nor Kevzara cure anything - they just manage the inflammatory process to reduce symptoms.
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