First Kevzara injection at 3 wks

@stonewheel and all... Yes, the flare is definitely improved. I couldn't be typing or thinking well otherwise. I can now spend some time up doing daily small chores-feeding cat, cleaning litter - usually, fixing breakfast and cleaning dishes... those kinds of small everyday chores. Some days they are done piecemeal, others I can do most at once. Just depends on these crazy muscles and such. The pain is always there, but much reduced and controlled by Prednisone, not entirely.

Today, I awoke with intestinal problems from nowhere! Fun! So, my usual morning dose I take at 5-7 each morning I just took, at 1 p.m. My tummy would have rebelled and man, I am truly feeling the difference. I am hurting like crazy, heavy pain increase and muscle freezing. I waited too long I think so am paying the price... Hips, shoulders, back and all my arthritis in arms and hands, neck are yelling pretty loudly right now.

Apparently, I have, maybe this is normal for those going on Kevzara, PMR that doesn't respond to Prednisone anymore and needs more consistently to help with symptoms? I think that's the criteria for this treatment? I just realized the Kevzara will replace Prednisone to control the flare symptoms, without the heavy dependency and side effects. I thought it was a temporary medication to get us off Prednisone. I'm happy to stay on Kevzara if it works which it appears to. What side effects have you experienced? You mentioned having to go from 2 to 3 week shots... what was the reason for that change?

I know it may take a year or so to get the symptoms controlled after beginning tapering Prednisone after the Kevzara begins working, 3+ months or so. That's fine with me. I don't mind if it helps! With this disease, as with most I've experienced, I'm willing to do whatever it takes to improve my health. What side effects do we see, other than serious infections... perhaps some low blood pressure? Yes, too many questions. I spent time last night researching on Perplexity and began to wrap my head around this treatment. I only heard about it a week or so ago, so it's quite a surprise and gives me hope I had lost.

I am actually very pleased to be off a lot of heavy meds. It took me 3 years working with a very special dear Mayo physician to taper off Gabapantine, Lyrica, Hydrocortisone, Oxycodone, even 800 mg Ibuprofen 4X daily... and some anxiety drugs as well. Tapered gradually off every one of the heavy drugs I was taking for years, begging the doctors to reduce or remove them from my list. No one was willing to invest the time or effort to help me do that. I experienced brain fog, personality changes, intestinal issues and other side effects. What a joy to finally be off these chemicals that may well be the underlying cause of some of my current health issues. Too many chemicals!

Thanks for your input. I anticipate good results. Think it forward! Boy, I am hurting. Shows my dependency on Prednisone. Chat later. Blessings. Eliazabeth

@stonewheel and all... Yes, the flare is definitely improved. I couldn't be typing or thinking well otherwise. I can now spend some time up doing daily small chores-feeding cat, cleaning litter - usually, fixing breakfast and cleaning dishes... those kinds of small everyday chores. Some days they are done piecemeal, others I can do most at once. Just depends on these crazy muscles and such. The pain is always there, but much reduced and controlled by Prednisone, not entirely.

Today, I awoke with intestinal problems from nowhere! Fun! So, my usual morning dose I take at 5-7 each morning I just took, at 1 p.m. My tummy would have rebelled and man, I am truly feeling the difference. I am hurting like crazy, heavy pain increase and muscle freezing. I waited too long I think so am paying the price... Hips, shoulders, back and all my arthritis in arms and hands, neck are yelling pretty loudly right now.

Apparently, I have, maybe this is normal for those going on Kevzara, PMR that doesn't respond to Prednisone anymore and needs more consistently to help with symptoms? I think that's the criteria for this treatment? I just realized the Kevzara will replace Prednisone to control the flare symptoms, without the heavy dependency and side effects. I thought it was a temporary medication to get us off Prednisone. I'm happy to stay on Kevzara if it works which it appears to. What side effects have you experienced? You mentioned having to go from 2 to 3 week shots... what was the reason for that change?

I know it may take a year or so to get the symptoms controlled after beginning tapering Prednisone after the Kevzara begins working, 3+ months or so. That's fine with me. I don't mind if it helps! With this disease, as with most I've experienced, I'm willing to do whatever it takes to improve my health. What side effects do we see, other than serious infections... perhaps some low blood pressure? Yes, too many questions. I spent time last night researching on Perplexity and began to wrap my head around this treatment. I only heard about it a week or so ago, so it's quite a surprise and gives me hope I had lost.

I am actually very pleased to be off a lot of heavy meds. It took me 3 years working with a very special dear Mayo physician to taper off Gabapantine, Lyrica, Hydrocortisone, Oxycodone, even 800 mg Ibuprofen 4X daily... and some anxiety drugs as well. Tapered gradually off every one of the heavy drugs I was taking for years, begging the doctors to reduce or remove them from my list. No one was willing to invest the time or effort to help me do that. I experienced brain fog, personality changes, intestinal issues and other side effects. What a joy to finally be off these chemicals that may well be the underlying cause of some of my current health issues. Too many chemicals!

Thanks for your input. I anticipate good results. Think it forward! Boy, I am hurting. Shows my dependency on Prednisone. Chat later. Blessings. Eliazabeth

@ess77

Okay ... your pain medication list reveals that you have a lot going on. I don't think it is only PMR. I truly hope Kevzara will work for you. Kevzara will target PMR inflammation but Kevzara also inhibits IL-6 which effectively blocks this pro-inflammatory cytokine from triggering a systemic inflammatory cascade. I think chronic high levels of IL-6 can set off a chain reaction of inflammation. I hope Kevzara stops the chain reaction for you like Actemra (tocilizumab) did for me. I'm so happy to have reduced and ultimately to have stopped prednisone along with other medications that treated prednisone side effects. Since your pain medication list indicates there may be more underlying factors than just PMR, the IL-6 pathway block can be especially helpful in dampening widespread inflammation.

I remember when a neurosurgeon was increduluous that my pain medication list wasn't a mile long for a different problem that makes the top 10 list for the worst pain know to humanity. I confessed to the neurosurgeon that I needed to take a lot of prednisone but some surgery also helped.

@ess77
No not fun!

I don’t take Gabapentin because of the brain fog and OCD it causes me. Lol I get stupid on it.

Yes, it takes 50-60 days to get the FULL effect of Kevzara (sarilumab) but I felt it was working sooner as I tapered rapidly to get to 10mg/day of Prednisone (from 30, when it was approved.)

The only side effects that I’ve noticed is low white blood cell count, low absolute neutrophil count (ANC) and Platelet Count. Those last two are critical to continue taking Kevzara.

The “standard” dosage of Kevzara is 200 mg and may come in a prefilled pen or in a syringe. (Mine comes in a pen, easy-peasy, and is shaped like a knife handle.)
A 150mg dosage is also available if either of the below “side-effects” occurs.

If ANC is down to 1,000 cells/mm, and stays there, then lengthening Kevzara from 2week intervals to 3weeks can be done. But ANC must be at 1,000 or more.

Between 1,000 and 500, the a lower dosage of Kevzara 150mg is prescribed.

If lower than 500, then Kevzara is to be discontinued until ANC count is back up to at least 500 (see above).

As for Platelet Count, the number must be 100,000 cells/mm or more to continue, but 3weeks if it stays close to 100,000 repeatedly.

Platelets Count 50,000-100,000, use a lesser dosage, (150mg pen or syringe) as mentioned above.

Platelets Count below 50,000, discontinue until they have risen, then resume.

I think the 3week interval is a rheumatologist invented scheme. I’ve never read it in the Kevzara (sarilumab) literature. I first saw it discussed and performed on this website.

All of my numbers were above the high numbers shown above but my rheumatologist told me to stop anyway. That was unacceptable, to me, so I went to my PCP of thirty years and he I agreed that there was no reason to stop, but that I could try 3week intervals and see if my numbers rose. They did.

They did a little bit and I felt fine, no flare, a tiny bit more pain during the first third week, but fine again after the 3week injection. (And, I continued to taper Prednisone from 4mg/day to 3mg. The next 3week interval, I felt fine the whole time and continued tapering the Prednisone down to 2mg/day.
I’ve just reduced Prednisone down to 1.5mg/day and am 10 days away from my next 3week interval for Kevzara 200mg.

Because my numbers are good enough for 2week intervals, I could go back to 2week intervals but if I don’t need to, then I don’t see why I should. Plus, my numbers should continue to improve and after I’m off Prednisone, I may widen the Kevzara interval to 4weeks. Then, 5 weeks etc., although there is no literature about tapering Kevzara (that I’m aware of.)

I hope this answers some of your Kevzara (sarilumab) questions. You’ll have more, lol, it’s a new medication and no really long term data is available of course. I think we are the data and probably our experiences will hopefully be processed into future number crunching to inform prescribers and patients in the future.

Prednisone must be taken in a timely manner. Same time(s) every day. Just like blood thinners and pain meds, etc.
If you are late, you’ll feel it. You’ll be very lucky if you don’t.

I have alarms on my phone. Seven times a day, I have an alarm go off to remind me when to take what medicine and when to eat so that I have food in my belly before some of the medicines. That way I don’t forget. I’ve been lucky and not had a stomach situation preventing me from keeping food down. If you find a way around that, in order to take the meds on time, let me know; otherwise, I’ll just resort to deep meditation sour dough bread and bananas.

I hope you’re feeling better. Best wishes with the Kevzara and the PMR relief.