Stopping Kevzara

[tazman3]

I have had to stop my Sarilumab jabs, yet again, because my white cells have dropped again. I have been off the drug for over three weeks now and have heard nothing since my last blood test. I expected to feel gradually worse without it but I don't. I still have the pain and take my painkillers, but I feel more awake and less lethargic. It's not the first bio I have tried and the others have been the same.

Does anyone have experience of this? I get so sick of being on/off the meds and wonder what the point is of taking a drug that has such an intense side effect. Surely it can't be good being up and down like this on a fairly regular basis.

Has anyone stopped biologics and not had to go back on them? I am still getting hot flames running up my arms and legs, which I know is the inflammation. But I had those when on the jabs.

Or am I just kidding myself and next week I will feel lousy again?

[SheilaT3271]

I’ve been on Kevzara for about 4 months now and it seems to be helping (this is my third biologic so am very grateful to get on it).

It’s helped with pain and most of the inflammation and I do really feel better although there are always some days when I feel fatigued. I know this drug is known to affect the white blood cells so hopeful it hasn’t affected mine. Am sorry for your symptoms and hope you find some resolution as it can be really unsettling to keep switching.

[tazman3 in reply to SheilaT3271]

Well it looks like I was kidding myself. I'm still off the sarilumab and have developed acute abdominal cramps. It's usually after eating (nothing in particular) and I have been taking buscopan. Does anyone know whether untreated inflammation causes this? I have been reading that RA can cause stomach issues and wonder if it's the disease being free to attack with no defence!

I eventually got a call from a bio nurse who just said I could go back on it again. But, what is the point when it will just floor my white cells as usual. She said she would speak to the consultant and ring me back. That was a couple of weeks ago and I've heard nothing. Pain is getting worse and appearing in new places. I have a permanent headache and its affecting my already low mood.

I feel like I'm just being ignored and left to fend for myself.

[SheilaT3271 in reply to tazman3]

Am so sorry to hear this. Is it worth asking if you could move to another consultant? I’ve been lucky that the RA team I have are pretty responsive when I’ve contacted Ted them about side effects but not all are so lucky. Can you talk to your gp?