@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.