What was your experience on Kevzara?

I found sparingly using Mupirocin ointment 2% on all cuts, infections, bruises and other skin irritations has really helped keep all these as non issues and promoted fairly quick healing. I have been on Kevzara and off predisone for 3 years.

@linnead
I’m on 5 mg of prednisone and I tried going to zero after a year but it didn’t work! So I will be trying Kevzarro soon. Is there anything I should expect with this medicine. I’m also waiting to see if insurance will cover it. cost is $5,000.00. If no coverage I will have to find something else!!! Way too expensive!!!
JudyJ

@eparnold0219

Maybe you will need Kevzara "long term" --- but not always.

The general idea is to taper off Prednisone within the first year and then to wean off of Kevzara during the second year.

It didn't work that way for me. I have been on Actemra (tocilizumab) for 7 years. My last dose of Prednisone was more than 5 years ago. My rheumatologist has no current plan to stop Actemra although we have tried in the past.

At least my side effects from Actemra are minimal compared to the side effects I had during my 12 years on Prednisone. After my first year or two on Prednisone, my rheumatologist wanted me to taper off Prednisone except I couldn't.

The nice thing now is that my rheumatologist never tells me I need to taper off Actemra. I could stop Actemra but I'm not dependent on Actemra because it doesn't suppress my adrenal function.

I'm usually asked WHY do I want to discontinue Actemra because it is working well. I don't have any PMR flares anymore AND my adrenals are no longer suppressed.

@judy15
Check Kevzara site for financial help. Loved it.
Easy peasy for me, one shot bi weekly by myself in my belly. Got off prednisone within the 3 month initial period.

@dadcue
We are all different, but good to know what others are going through and the length of time this might take@! So helpful! Actemra is a potential drug in my future but you are the first one I read to mention it. So helpful annd best wishes to you!

@judy15 I’ve been on Kevzara for 2 years & was able to get off of prednisone after a few months. I’m on Medicare now but was on private insurance when I started. First you need to get your doctor to send a letter of medical necessity to the insurance company (with Medicare too) then with private insurance the manufacturer has an excellent program to assist with the cost of the drug. Go on their website. Also ask your doctors office for help, mine did everything for me. Good luck, it’s worth it!

Don't have knowledge of all the pitfalls of kevzara..for me , it let me return to a normal life..after 20 years finally able to excercise, finally no anemia and perfect blood work. Warning:the shots are painful,

@jsue
Are you using the pen or prefilled syringes? The reason I'm asking is because most people don't mention or consider their shots being painful and I'll be starting kevzara soon. Some do mention pain of course, and some mention reactions to the shot either from their choice of shot location or intolerance.

@kjoed53 i too have nit read much here abt pain.
I have no pain with shots. I do the stomach around belly button. I’m sitting with stomach protruding, pinch skin and inject. My Dr warned me not to tense up…..good luck.

@tweetypie13
I'll need the luck. My rheumatologist still has not sent in the script for my kevzara, which he was supposed to do last Thursday. I'm thinking of finding a new one.