What was your experience on Kevzara?

@tweetypie13
No but I will.

@stonewheel
I pay pretty good attention as to what I have done on previous days. For the last three months since starting Kevzara I have noticed not so pleasant reactions for a few days after the injection. This time just seems worse, but my PMR fatigue has been worse lately though. Also since starting the injections my skin, esp. back, has been breaking out and itching terribly. My Dr. didn't seem to be worried per messaging. I see him in one month, the last of my four month experiment, guinea pig, with the injections. I am still on 7 mg of prednisone daily, and just doing my best to figure out a way to alleviate this misery. Caught your sleeping comment, a testament as to just how brutal this disease and its treatment can be. Thanks and be well.

@danboldman

The 7 mg hurdle of prednisone is a tough hurdle to get past --- with or without Kevzara. The 7 mg dose of prednisone isn't low enough to decrease adrenal suppression AND 7 mg of prednisone in combination with Kevzara can be too much immunosuppression. Sometimes it isn't fair to blame one medication more than the other medication. Sometimes it is the combination of medications.

I was able to get off prednisone after Actemra (tocilizumab) was tried. It still took me more than a year to taper off prednisone and several "adjustments" were made during the year. Things didn't exactly go according to the original plan and tapering off prednisone still took a long time.

Even after I tapered off prednisone things got complicated. Within a couple of weeks of being off prednisone, I was right back on 60mg again. Actemra was actually stopped for a couple of months while a different biologic was tried. My rheumatologist said Actemra wasn't going to add much to 60mg of prednisone. The problem I encountered wasn't because of PMR because Actemra was working for PMR. Being on two different biologics isn't allowed.

My problem was something completely unexpected and never anticipated. It was believed that another biologic might work better but that wasn't true. I went back on Actemra with some additional adjustments being made and tapered off prednisone again only much faster than the first time.

I didn't feel like a guinea pig. I felt like I was in "uncharted waters" because not much was known at the time. There still isn't too much that is known. There are always things to learn about how each body will react to medications and a combination of medications.

@danboldman hve a Freind put cream on your back

@kjoed53 I use prefilled syringes and give myself the shot in my thigh. I have read others numb the shot site with an ice cube ahead of time. I take the syringe out of the refrigerator 1 hour before I give myself the shot so the medicine is room temp. It hurts when the needle goes in and puts the med in my leg. But honestly, if I count to 3 seconds it is over. Not terrible at all. Then that is the end of it. No big deal.

@tweetypie13
I have a lovely wife who does just that and it does help to some extent. Thank you

@danboldman
I know what the Kevzara directions say, but I prepare it differently.

It says to take it out of the refrigerator, keep it in the box to avoid light, and warm up to room temperature for at least one hour prior to injecting; adding not to heat it up by any other method.

Instead, I take it out of the refrigerator in the morning, right after I take my Prednisone, and leave it in the box under a towel to slowly warm it and keep it in the dark. In the evening, after supper, I take it out of the box and put it under my arm out for 30 minutes to an
hour (watch TV or occupy the time on my phone) because I want it closer to my body’s internal temperature.

People, I’ve read on this website, have mentioned that they injected it when it was too cold and that it was painful.

So, I am actually heating it up warmer than room temperature. Not in the microwave, submerging it in hot water, or anything stupid like that. I just simply place it under my arm and let my body slowly warm it up, closer to the temperature of my skin.
The liquid enters my body at approximately 90*-92*F, instead of 72*F.
I never feel it go in and I do know about injections. I get knee injections, every six months, and gave my mother daily insulin injections.

I never feel the liquid as it enters. I never bleed or see anything other than the circle imprint around the needle site from the device for a few seconds. It quickly fades to and I go on about my evening before bedtime.

Maybe this warmer method may help. Probably not, but worth a try. I’ve done it this way from the first injection.

I always feel better the next 48 hours after the injection, but it’s probably as much psychological as physical.

I wish you the best. If I didn’t explain my method well, let me know and I’ll make another attempt.

There are some techniques and skills that can be learned. I started IV's and gave injections for a living. When I first started doing them, I would be the first person telling you that you wouldn't want me to do it. Eventually, patients were requesting me to do it and other nurses came to me to do it for them.

Some patients are just wimps. I find it difficult to do any injection to myself. When someone else does it to me, I always try to say it didn't hurt but sometimes I lie.

I'm not as bad as some patients who scream before a needle ever touches anything.

@danboldman

Hi.
Maybe this applies to your wiped out feeling, or maybe for future reference. She has a lot of videos pertaining to PMR and treatment.

Are you any better?

Our doctors need to know about all the supplements that we are taking so that they can interpret our blood work accordingly and help us avoid drug interactions, adverse reactions and the poisoning that can occur at high dosage of some supplements (including vitamins). Distinguishing between misinformation, incentivized information, misguided information and accurate information on the internet is becoming more difficult. If someone is providing information while selling their own products or as an incentivized spokesperson for someone else's products then they are not an impartial source. This is not to say that we cannot obtain sound and logical information from our fellow sufferers, but my advice to avoid worsening the situation that brings us here in the first place is not to add supplements without prior consultation with your health care providers.