Wait 4 flare to happen B4 starting Kevzara or ?

I too had extreme pain from PMR for two months before my diagnosis. It lasted all day and night. I was only able to sleep a couple of hours at a time and not at all in bed. 25mg prednisone was like paradise to me. My tapering was necessary because of a subsequent SMM diagnosis. I didn't feel my taper much until I reached 10mg prednisone. I started kevzara 8 weeks ago but it can take up to 3 months to reach full effect. I'm at 1.5mg prednisone now and waiting for my kevzara to pick up the slack. I don't ever want to be back to where I started with PMR pain. If that's your thought process, consider the kevzara. If your deductible is based on calendar year, you might want to ask your rheumatologist to slow your taper so you can start kevzara in January instead of now.

@kjoed53
Thank you for sharing your experience with me again. It sounds very similar to mine, and I don't ever want to feel that again either. Sleep is even more precious after going through those months!!! I'm so sorry you have SMM. I'd never heard of it so I just looked it up. I hope you will be ok and that it isn't fast progressing. It says it's asymptomatic. I hope that's true and you don't feel any pain or discomfort from it.
The idea of asking my Rheumatologist to slow my taper is a great idea because then the RX deductible will cover the whole year instead of just the last 3-4 months. I didn't know it can take several months for full effects of Kevzara to kick in either, so that's something to consider too. If it takes a few months,
that could be another be why she wants me on it so soon. I'll be discussing all this again with her, but everyone's input really helps me form questions and get answers too.
Thank you so much for your help. It's appreciated. Blessings.

@boomermeg
Thank you! Because I was on 25mg prednisone when I had my bone marrow biopsy, I don't have a true picture of my SMM risk of progression. I'll be having another biopsy in November when I have been off prednisone for a full month. My rheumatologist caught the probability of the blood disorder in his initial blood work. He believes that part of my shoulder pain and fatigue is from SMM because the pain was not fully relieved with prednisone.

@kjoed53
I'm so glad your Dr. caught it right away in initial blood work.
Thank you for mentioning your SMM in your post because like myself, many have probably never heard of it.
I hope the November biopsy will bring news that it's not progressing quickly. Blessings.

@boomermeg . Glad you are looking into Kevzara. It takes a while to work but does work for many people. Also it is good to start the process early in your PMR journey so you have it ready and waiting if you decide to do it. You are still in the early days and on a fairly high dose of pred. I would try to get a dose and schedule on pred that works. Your post sounded like it is still not quite working for you. I am one of those believers that prednisone should take close to 100% of the pain away. Don't get me wrong, I still felt strange and not great on high doses of prednisone (for me 15 mg was the highest)but pain free was an amazing experience. In fact, I had no pain from any sort of activity my first two months. Now I know how some get to live their lives (ie pain free) and I can at least remember that feeling with a sort of nostalgia and hope that in my next life I can be pain free like some of the lucky people :).

It took me about two to three months to get insurance to authorize Kevzara. Lots of back and forth and denial then OK then denial again, etc. We were finally triumphant and I had it (kevzara prescription) in my back pocket, so to speak. I was around 9 mg of pred at that time and went to the Dr for a check in and progress report. We were planning on incorporating Kevzara at that meeting and actually decided against it. The main reason was that Prednisone was working and my taper was working. I had had no flares up to that point (never did) and thought that by the time prednosone was done I would be barely feeling the benefits of Kevzara. We decided to shelve the option and never did act on it. I tapered in 10 months without flares.

@petermccarville
Thanks very much for responding. The 25mg Prednisone totally took away ALL my PMR pain, and ALL my chronic pain from my spine (especially neck/upper back, but have other pain issues as well). Since starting to taper (tapered from 25mg to 22.5mg-felt only a little of my chronic neck/upper back pain and some "feelings" in the areas where the PMR was but it wasn't that type of pain). Then tapered from 22.5mg to 20mg last Saturday (12th). Since Saturday I've started to feel even more of my "old chronic pain" but also more areas where the PMR pain/symptoms were, but it's still not anything like the level of pain or symptoms like I had prior to Prednisone. I'm thinking it might be the normal process of my body starting to "feel any pain" again, and maybe feeling the areas where PMR symptoms were but I don't know. I'm trying not to overreact as if it means it's definitely going to get worse because it might not. I'm trying to take it a day at a time regarding whether I'm truly feeling any "flare" type symptoms or pain before I let my Rheumatologist know. The minute I'm sure, I'll be on the phone and Medical group portal.
It sounds like a good idea to have the Kevzara. I'm betting that my Medicare Advantage insurance will do the same, deny, require other meds first etc.
It would be fantastic to not have any flares all the way down and not need Kevzara. May it be so for me!!
So glad you were done in 10 months. That's great to hear.
Blessings.

@boomermeg . Sounds like you got the logistics taken care of. Let's hope the body cooperates and does not flare. When I was tapering, people on this site told me that a flare was something that lasts and gets worse over a weeks time. If it stays the same or starts to wane, then it is not a flare. I did have some trepidation and worry as I tapered. That old "what if..." and "is that PMR". I too have non-PMR pains but they were more noticeable when I was down in the 2-3-4 mg ranges. In fact, I know these pains well and that helped me realize that it was more of an adrenal issue/old past pain issue and not PMR.

I followed an international protocol with the treatment and taper. It was a 15 to start. On it for 1 month, then 12.5 for a month, then 10 for a month. When I went from each of these I worried but the 10 was working and in fact, I felt like PMR was leaving me around 8-9-10 mg. I told my wife that I think I "had it on the run". Just a feeling like I was kicking its ass. After a month of nine, I started to do three weeks between tapers. When I got down to 4-5 mg, I did every two weeks by a 1/2 mg. It slowed it down but made for a smaller percentage of drop each time. It is all up to you. As with many on this site, I recommend slow slow on the taper. Be solid with the efficacy of each step before you drop to the next level.

Good luck to you. We on this site are very sincere with our care for each other. It is such a bizarre club to be a part of. 🙂

@petermccarville
We are all sincere and it really helps, and yes, a bizarre sort of "club" to belong to!!
My husband tries to understand, he knows just how bad my pain and symptoms were, but it's only the people who been through "the crucible" of PMR who can totally get just how bad it really is. Thanks for the encouragement and yes, that's what I hear, slow slow taper. Right now from 25mg, 22.5, 20mg, 17.5mg, (etc) every 14 days is the schedule but I'll let my Rheumatologist know if it seems too fast that I'm getting close to a flare. So far so good. I hear the lower you get mg wise, the slower and smaller mg taper you probably need.
It is weird and "unfortunate" 🙁 to feel all my old chronic pain coming back. It was so amazing not to feel it every single day. But it's very familiar and I have medicine for that so it's very livable. Just "unwelcome" after the break from it.
Thanks again. Blessings.

Sometimes I think that the 25mg prednisone I was on curbed my osteoarthritis pain enough where I hurt myself without knowing it. The taper brought that pain back, but I feel more pain in my knees than I remember. Either that or I just need to get used to it again. I'm not supposed to take ibuprofen because of interactions with other meds and Tylenol does very little for me so I have little choice but get used to it now.

@boomermeg I certainly know your waking up in the night with severe hip pain. Strangely, I don’t cry due to my own pain, but I do cry when others are in pain. I hope you don’t have an internal bleeding issue. I’ve learned that Prednisone is a “go-to” medicine for some types of bleeding disorders. Dr. Megan ( the Prednisone/PMR YouTube pharmacist took Lrednisone long term for an internal bleeding disorder.

Having mentioned that, Prednisone may be a good fit for you.

This is just my opinion from my personal experience with Prednisone and Kevzara, and learning as much as I can from others for my own treatment.

If you do not have any seriously bad side-effects from Prednisone, stick with it only.
(Me, I couldn’t because of the side-effects and I was probably started at too high a dosage. It made me feel like Superman for a few weeks, but also clotted my blood in concert with another prescription drug I was given for a Prednisone side-effect that was horribly and painful, that also clots blood. I ended up with hospitalized for 5 days and have to take Eliquis now as long as I’m on Prednisone.

Kevzara is not a “magic pill” medicine for me. I use it to get off Prednisone (now alternating days of .5mg and 0 mg, for another week to ten days.
Kevzara will allow me to get off of 4 prescription drugs to counter the Prednisone side-effects and the 4 OTC supplements taken at precise times of the day so they don’t interfere with each other. A real balancing act.)

Kevzara, for me, is not as effective at relieving all the pain like Prednisone alone did.
Kevzara works differently and targets Interleukin (IL-6), as you know. I can feel the difference in the way it works. I’ve wondered/considered if I would have to take both if I’m to feel normal again but it’s really not an option. I’m just stuck with some hip pain and slight shoulder pain, but sleep helps relieve both.

Kevzara has a half-life of 21 days, so it takes 6-8 weeks to build up a maintenance amount in your system. (Thus the need for something else in the beginning, like Prednisone or glucocorticoids or cortico steroids…)

For me, I would have remained on Prednisone all by itself because of its total effectiveness at eliminating the PMR pain. It just happened to be “mean” to me in so many other ways.

Prednisone is pennies per day.
Kevzara is $5k per month. If you have good insurance, you’ll pay your deductible the first injection and the rest of the year it costs nothing out-of-pocket.
You insurance will apply for and get the “manufacturer’s assistance discount” of $1k/month. If no insurance, one has to apply on their own for that discount. Crazy, but that’s the way it is in the USA presently.

There are some other IL targeting inhibitors that are being tested, specifically IL-17 and IL-23 proteins. One of which may be FDA approved for PMR soon, as trials are currently underway.

If Prednisone alone works for you and has no ill side-effects, I’d suggest that you just take Prednisone only.
(It may be prescribed to you for an internal bleeding disorder anyway. Just guessing though.)

I would not take an expensive drug that only works just okay vs an inexpensive ready-available drug that works great (provided it causes you no bad consequences.) I just have no choice.

I feel your pain, physically and the mental struggles of a successful for you treatment plan. One that we hope will lead to a drug-free painless back-to-normalcy again.

I wish you the very best of success. You know that. Keep us informed of your status and progress. We all learn from each other.