Kevzara and Prednisone Tapering before and during Kevzara

I've had one or two possible symptoms of GCA since Thursday, but on Saturday I had pain on the top of my head, at the base of my skull and in my right temple, plus pain when chewing. I decided to let the ER check it out. It's not GCA, but probably migraines. I never had one before so I had no idea what one felt like or knew that not every migraine is debilitating. Prednisone tapering causes many changes in our system and can cause migraines.

I have been on Prednisone for a year and a half. Started at 15 mg and am now still at 7 mg. This winter I did a four month experiment with a Humira biosimilar and saw no improvement, actually a bit worse with the PMR. I am now in my third month of Kevzara with 7 mg of Prednisone. My condition seems to be getting worse, not the typical sick and wrong pain of PMR, but numerous other issues: Weaker, balance issues, lots of extreme hand pain and strangely, skin breaking out on my back and itching like mad. I am trying to muscle through this new four month experiment but it is getting tiring and frustrating. This disease is truly a nasty and life-changing problem. Yes, it is not cancer but we still are having our lives turned upside down and as far as I can see with no real hope of ever getting better. I am 79 so be it I guess. Thank all of you for this chat room as most folks have no idea of what we are going through.

@danboldman Hi... I had some of your issues when I was on both prednisone and kevzara. Once off prednisone many of the "issues" disappeared with time. The way I would describe it was... "I had the pain of the month... started out of nowhere and left as it started". Itching, skin breaks, aches here and there as well as muscle/tendon/ ligamement aches/pains. Balance issue sudsided with time when off prednisone and balnce exercises as did my head being in a cloud.

Thanks, I hope that it all works for me as it did you. Be well my friend. Haha an understatement on this site.

Kevzara is contraindicated in patients with diverticulitis. Has anyone with diverticulosis been started on Kevzara and what has been your experience? Is there any testing that can be done to monitor for intestinal perforation other than a colonoscopy or checking for blood in the stool.

@stonewheel
Additionally, like others mentioned, my WBC, ANC, and Platelet Count all are hanging around the bottom of “Normal” to occasionally barely below normal.

My rheumatologist seems overly concerned but the levels are above Kevzara’s minimum requirements. So, gladly, keep injecting.

Like Mike noted, Kevzara targets IL-6. It doesn’t completely shut down inflammatory responses to anything other than PMR, from my research.

Me, I need to be off of Prednisone and I don’t think my rheumatologist has (or has had) any other PMR patients. If she does, I’d be surprised. (And that’s okay.)
I mention that because, we know our bodies better than anyone. We know our pains and quality of living before and after we walk out of their office. It doesn’t take us long to know what works and what doesn’t; we know what was a mistake and what wasn’t (sometimes that takes months.) She’s good, but ultimately I decide the “risk vs benefits” treatments (or lack of) being fully informed.

I live in a National Forest, with few neighbors, and have little social interactions other than doctor appointments (in person) and grocery shopping. Both of those are excellent places to catch infections, but so far-so good.

Best wishes with luck added.

@stonewheel

It is true that Kevzara does not completely shut down all of the inflammation pathways. However, Kevzara isn't specific to just PMR. Kevzara can work for other autoimmune conditions.

The problem with treating inflammation is that NO single isolated inflammation pathway exists that is specific to PMR or anything else. The inflammation pathways are more like a communication network that transmits messages everywhere and not a single direct line of communication.

Interleukin-6 (IL-6) is a major chemical messenger in this communication network. People with PMR tend to have elevated IL-6 levels but there might be other reasons why IL-6 might be elevated. Also. there are other cytokines that get into the act and contribute to PMR inflammation too. For PMR ... the IL-6 cytokine might be the main one but not the only one.

I don't understand how the immune system works. There are a lot of moving parts and it's impossible to simplify how it works. All I know is that there are hundreds of individual cytokines and there is a lot of network chatter. The communication signals are sent throughout the body but somehow IL-6 inhibitors communicate the message to turn down the inflammation that PMR causes, With a bit of luck ... PMR inflammation gets turned off.

@stonewheel

Have you seen the "bathtub theory" that explains how IL-6 inhibitors work. I found this "simplistic diagram" when I wanted to know how Actemra worked.
https://www.researchgate.net/figure/Mechanism-of-action-of-tocilizumab-in-RA-bathtub-theory_fig2_221967570
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It took me months to understand this diagram. One day I realized the red "Y-shaped" thing in the lower right corner of the diagram was a molecule of Actemra which caused a drastic INCREASE in circulating IL-6 in the tub water which represented our bloodstream.

Then the magic occurred and the immune system resets and we are in remission ... clear as mud.

Hint: The IL-6 drain is the bottom of the tub not where the IL-6 molecule attaches. The receptor where Actemra attaches blocks the activation of the communication network that activates the immune system which cranks out too much IL-6. The communication network turns down our overactive immune system so the IL-6 faucet returns to normal. Over time ... the excess IL-6 is cleared out or is catabolized.

Artificial intelligence explains it this way:

The Bathtub Analogy

The Faucet:
Your body makes a protein called Interleukin-6 (IL-6). IL-6 is a messenger that tells your immune system to fight germs.

The Water:
In healthy bodies, the faucet runs at a normal rate. But in diseases like arthritis, the faucet runs too fast. It fills the bathtub with too much IL-6. This extra IL-6 causes the immune system to attack healthy tissues.

The Drain (Actemra):
Actemra is like opening the drain in the tub. It blocks the IL-6 from locking into your cells. This stops the "water" from overflowing, which reduces pain and swelling.

I started Pred in July of last year when diagnosed with PMR. I started at 20 mgs. In August I started Kevzara injections every two weeks. I reduced Pred by 2.5mgs every two weeks. I was off Pred by the middle of November and have only been on Kevzara since Nov 17th. I have been doing an injection every 2 weeks until February then started to have trouble with my WBC and Absolute Neutriphils being two low. This is a side effect from Kevzara. I moved to once a month injections and doing great. Now we are moving the injection out to 5weeks, then 6 weeks, 7 week etc. Hoping no breakthrough pain and I can slowly get off all medication. My CRP and other tests have been normal. Hoping for the best.

@laurelfagan

I'm impressed with how quickly you tapered off Prednisone after Kevzara was started. The sooner the better in my opinion. I was told that I should take Prednisone for the rest of my life instead of trying a biologic. That was a long time ago when Prednisone was called the "best option" and the "only option." I'm happy that you transitioned to Kevzara so soon.

I now do a monthly infusion of Actemra (tocilizumab). Since I took prednisone for more than 12 years it took me about a year to taper off orednisone after Actemra was started. I had the same experience with my WBC's and Absolute Neutrophils being low but that was only temporary. After I tapered off Prednisone, my doctor wasn't too concerned and said my infection risk wasn't any higher. My infusion dose was decreased which was easy to do.

I have also gone 5 weeks, 6 weeks and 7 weeks between infusions. I didn't feel any worse but my rheumatologist didn't want me to go 8 weeks without an infusion. I thought I could go 8 weeks . My ESR and CRP levels were increasing but my pain level was not increasing.

I have been on Actemra for 7 years. Other than the temporary decrease in my WBC's, I haven't had any other side effects. My rheumatologists doesn't want me to stop Actemra which wasn't the case when I needed Prednisone for 12 years.

Since I tapered off Prednisone 5 years ago, my rheuatologist doesn't want to change much of anything. However, I have stopped about 7 other medications that were treating prednisone side effects. My PCP said she liked deprescribing the old medications I was on a lot more than prescribing another new medication when I was taking Prednisone.