First Kevzara injection at 3 wks

Panic attack…breatheee, talk to,us, we are here for you.
Been there done that, it’s scary…..YOU are OK……you can do this….
BREATHEEEEEEEE 😘

@tweetypie13

Please get out, walk, fresh air, swim, walk in pool find a friend….you are fine. Get with other people who know you and what you are going thru. It’s just a moment……surround yourself with happy stuff.

Just a guess but maybe you have concerns, worry, anxiety and/or stress related to the change of going to 21 days? The thought of a new PMR flare is enough to worry anyone of us. Try to relax. The fact that you were able to go the 21 days is a testament to your body's ability to heal and reset itself. The kevzara itself is not a cure. It's simply a tool to give your body time to reset. I'm not there yet, so I'm truly jealous and happy for you at the same time.

How are you today?
I hope relaxed.
I’m not off Prednisone entirely, but I’m down to 2mg/day and plan to be off by September if not sooner.
I began spacing my Kevzara injections to 3weeks apart instead of 2.
I noticed a little bit of difference but was determined to plow through it, and now I feel just as I did at the 2week intervals.
When I’m off Prednisone, I plane to lengthen the time between Kevzara injections. But, that’s just me. It’s probably safe to stop Kevzara cold turkey, but I don’t want a flare. There is not a lot of (years, decades) data on how to cease Kevzara, so I consider myself a lab rat and I’m ok with that. I hope to help others if my experience with PMR and my response to it works well. Time will tell.
Hopefully you’ve rested.
How are you today?

@reub4
Hi.
How are you today?

@reub4, @stonewheel, @kjoed53, @tweetypie13... and all... Oh, boy! You are all wonderful!

Reuben, thank you so much!
Your message has me very excited and pleased as I am now awaiting approval of Kevzara to begin the treatment. I'm in the middle of a severe PMR flare that hit me like a ton of brick 2 weeks ago. I worked diligently 12 months to taper Prednisone, since May 2025 at 20mg due to paralysis from the hips down lasting 4 days in hospital rehab, after a serious diabetic event with high glucose. Diabetes is caused by Prednisone. We were able to finally reduce it to 16mg daily. At 15mg, paralysis set in again. So, with this flare, I am now back up to 18mg daily. 2 steps forward, 4 steps back!

I'm also taking, much to my primary doctor's unhappiness - I insisted he must give me something for the pain waking me nightly, keeping me awake in screaming hip pain... while both shoulders were hurting, upper arms, thighs, slight headache, not GCA, full body pain, muscle freezing... I additionally increased the Prednisone by 1 mg to reduce the pain. It helped, but not enough.

He finally prescribed a limited amount of Tramadol, 50 mg daily as needed. It is the only thing that took away the pain, relieves the back pain allowing me to stand, etc. It worked, but I had to beg for it...

Tramadol helped as did increasing Prednisone, which is of course what we're trying to not do... I also am taking 50 mg of CBD daily that is helping with the muscle tightness, freezing, allowing me to walk and lift my legs, helping the back pain a bit. Interestingly, 5% Lidocaine patches, 4-5 on my lower lumbar up to thorasic area, are quite helpful with everything else.

So, imagine, when I read your message about the wonderful last 10 months of success on Kevzara and you're OFF Prednisone!!! I was elated. Not so much after reading about your panic attack and issues. I am truly sorry you are experiencing that reaction.

I am prone to panic attacks, I'm afraid, as I have chronic stress in my life dealing with multiple health issues of my own, and a wonderful 57 year old disabled son whom I've helped the last 25 years. So, I have had several panic attacks during this current PMR flare and my son needed me and I had nothing to give... I couldn't help him. I couldn't even walk!!! I focused on dealing with my panic issues, calming my body and emotional self in order to help him with his issues! It is quite true we can't help those we love if we don't care for ourselves first. True and almost impossible to accomplish.

I am thrilled for your multiple successes, my friend. Over 10 months, no PMR issues? Tapering off Prednisone!
What a great experience! Commendable. Congratulations...

The advise and support you got from the previous folks is right on target for me with panic attacks. Proper breathing, which I'm sure you know, is vital. First and vital. Slow, easy, deep breaths, in to the lungs through the nose, the easy, slow release of breaths through the mouth. Do that regularly. Not long. Regular, calm, slow deep breaths. This stops the fight/flight process and begins your improvement.

Focus as you are breathing on your favorite location for relaxation... a lake, waterfall, trail, mountain, backyard, your dog or turtle, whatever... trick your body and mind into calm, easy, low cortisone/low adrenaline living. It will work quickly and well. I live in sunny Florida, so I often use a cool cloth on my face and head as well. That helps me. I'm female. May be part of that issue... don't know, don't care. It helps!

I then, partially due to my age and medical issues, rest usually a day. Listen to favorite music. Think of nothing important or serious... which is not easy for me. Pray or meditate. I also listen to Hallow app online and there is a favorite site there that calms me well. YouTube is wonderful - I listen to pipe music, classical piano, flute... whatever rings your chimes is where you go in your head.

Now, you are getting relief from the panic attack. Success... again! You day is filled with successes! Be proud of you!

I can't wait to hear about your following steps on this healing journey. Selfishly so, as I'll be following you soon, hopefully. I am not aware of the usual process with Kevzara, so are you to stay on the 21 day cycle for a specific time-frame? Is there a marker that tells you when to change the injection time-frame? Is it related to the Prednisone reduction? Perhaps you were able to go to the 21 day injections due to being off Prednisone? Sounds reasonable...

Any information any of you fellow PMR specialists can provide is appreciated. I expect to begin this process within a week or less, as I was notified the insurance approval went through early last week, so hopefully the pharmacy is working on my doses at this moment!

Blessings, Reuben and all. You are a very special group. Elizabeth

@ess77 oh wow to all….
Good news, you have a wonderful support group here. We stand together.
As for Kevzara l love it and wish i understood more abt it sooner. Lack of communication between me and my Rehumy. Note: I have not other medical conditions.
Kevzara to know….it is not usually instant gratification like prednisone. Can take up to 3 months to kick in while you are still on prednisone.
Also, as hard as it is, you may have to take step back to go forward. It’s ok to up prednisone, also Tylenol for Arthritis works with it.
I started with Kevzara bi weekly as instructed….stayed that way for 11 months, until my blood work went down. I was able to taper off prednisone. When blood number off, we went to every 21 days.
At last, I have come to realize, you cannot rush this. I tired Going off Kevzara, but inflamm numbers went up, so took drs advice went back on Kevzara.
As I said before…… Please get out, walk, fresh air, swim, walk in pool find a friend….you are fine. Get with other people who know you and what you are going thru. It’s just a moment……surround yourself with happy stuff.

You got this girl!

@ess77
Glad to hear you’re able to communicate during a severe flair. Perhaps it is lessening. Best of wishes for your son and you.
Stress can be a perpetual trigger for us. Stress must go. Find a way. And sleep 8+ hours. Sleep is when we heal and reboot. Exercise is good, but hard labor overworks some areas while not working others. Hydrate well. A smart diet is your ammunition. These are all things I have learned.
I, too, had to change Kevzara from 2weeks to 3weeks. I really don’t think it matters as my blood was above Kevzara minimums, but if the pain stays away or is tolerable I’m good with it.
We learn from each other here and this helps us talk with our doctors and ask smart questions.
Keep us informed and I hope Kevzara arrives soon for you and your response to it is all you’ve hoped for.
Keep us informed.

@stonewheel and all... Yes, the flare is definitely improved. I couldn't be typing or thinking well otherwise. I can now spend some time up doing daily small chores-feeding cat, cleaning litter - usually, fixing breakfast and cleaning dishes... those kinds of small everyday chores. Some days they are done piecemeal, others I can do most at once. Just depends on these crazy muscles and such. The pain is always there, but much reduced and controlled by Prednisone, not entirely.

Today, I awoke with intestinal problems from nowhere! Fun! So, my usual morning dose I take at 5-7 each morning I just took, at 1 p.m. My tummy would have rebelled and man, I am truly feeling the difference. I am hurting like crazy, heavy pain increase and muscle freezing. I waited too long I think so am paying the price... Hips, shoulders, back and all my arthritis in arms and hands, neck are yelling pretty loudly right now.

Apparently, I have, maybe this is normal for those going on Kevzara, PMR that doesn't respond to Prednisone anymore and needs more consistently to help with symptoms? I think that's the criteria for this treatment? I just realized the Kevzara will replace Prednisone to control the flare symptoms, without the heavy dependency and side effects. I thought it was a temporary medication to get us off Prednisone. I'm happy to stay on Kevzara if it works which it appears to. What side effects have you experienced? You mentioned having to go from 2 to 3 week shots... what was the reason for that change?

I know it may take a year or so to get the symptoms controlled after beginning tapering Prednisone after the Kevzara begins working, 3+ months or so. That's fine with me. I don't mind if it helps! With this disease, as with most I've experienced, I'm willing to do whatever it takes to improve my health. What side effects do we see, other than serious infections... perhaps some low blood pressure? Yes, too many questions. I spent time last night researching on Perplexity and began to wrap my head around this treatment. I only heard about it a week or so ago, so it's quite a surprise and gives me hope I had lost.

I am actually very pleased to be off a lot of heavy meds. It took me 3 years working with a very special dear Mayo physician to taper off Gabapantine, Lyrica, Hydrocortisone, Oxycodone, even 800 mg Ibuprofen 4X daily... and some anxiety drugs as well. Tapered gradually off every one of the heavy drugs I was taking for years, begging the doctors to reduce or remove them from my list. No one was willing to invest the time or effort to help me do that. I experienced brain fog, personality changes, intestinal issues and other side effects. What a joy to finally be off these chemicals that may well be the underlying cause of some of my current health issues. Too many chemicals!

Thanks for your input. I anticipate good results. Think it forward! Boy, I am hurting. Shows my dependency on Prednisone. Chat later. Blessings. Eliazabeth