I startedKevZara on January 9. I just had my third injection this week. And had lab work. I have standing orders now for lab work once a month. I’ve been on 20mg for over 10 years. I’ve tried to titrate down several times did not work , tried methotrexate, longest I ever was on methotrexate was seven weeks and then had severe abdominal pain so that was my second try of methotrexate, so far the Kev Zara is not giving me any problems. In fact, I believe my shoulder pain is better. I just started to titrate down to 17.5mg this week on the prednisone. My rheumatologist and my GP who I actually have more trust in, told me it’s unlikely I’ll ever get off prednisone. I’ll probably always need between five and 8 mg and I’m OK with that because I have not had horrible problems with prednisone. I was diagnosed when I was 54 which was young and it took them forever to diagnose me because you know of all the things.::: I was a woman I was too young, this that the other thing but that’s what I had . I think sometimes the Docs push you so hard to get off of prednisone. They’re not paying attention to managing your symptoms and if you can’t manage your symptoms and be mobile, it’s kind of counterproductive to the whole thing. So as much as everybody pushes to get off of prednisone, I feel like the medical community at large is still very unfamiliar with PMR as a diagnosis and how to manage the symptoms. I’ve had other orthopedic issues that have complicated things for me. I had had three back surgeries total knee replacement, and last year in the spring developed vertigo and fell in my own house and broke eight ribs so that all coupled with the PMR has been a challenge for me. but all that being said, I was willing to try the Kev Zara did a lot of research and reading about it it seems like it’s been used longer and more widely prescribed in the UK and some other European countries. I’m in a support group that is very internationally based so the dosing and treatments are very different in the UK and some other countries. so I would Kevzara a try. I know there was someone who commented they did one injection when it was afraid of cancer, but I think if your blood work is drawn monthly or every six weeks and somebody’s keeping an eye on it it’s worth a try. I am titrating down 2.5 mg a month so I’ve only gone to 17.5 this week and we’ll see how this first month goes but anyway hope that helps.
There’s a lot of research out there about these ILK6 receptors and blocking this protein, which is what Kezar is supposed to do and I think it just takes some time. They say anywhere from 2 to 12 weeks and I wasn’t really sure if they meant 2 to 12 weeks or 2 to 12 injections so I’ve had three injections so far.:; do we shall see.., we all need to hang in there and do our own research too.
Joy