Kevzara and Prednisone Tapering before and during Kevzara

Posted by mikeydee @mikeydee, Jul 3, 2023

I recently stated with Kevzara and I am interested in those who are currently on prednisone and Kevzara.
I would like to know...
1. What was your starting dosage of prednisone and how long have your been taking prednisone?
2. What was your daily dose of prednisone before Kevzara?
3. What was your prednisone tapering schedule before starting Kevzara?
4. What was your lowest dosage of prednisone before Kevzara and did you have difficulty dropping below that dose?
5. What is your tapering schedule now that you are on Kevzara?
6. How successful has this schedule been so far and have you had any flare ups?
7. What is your target date for stopping prednisone?
8. What changes have you noticed in your health, aches and energy level since starting Kevzara?
Please feel free to add any more information that might be helpful to those contemplating starting Kevzara or those currently on Kevzara
Thanks
Mike

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

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.

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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.

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Profile picture for danboldman @danboldman

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.

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@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.

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

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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.

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Profile picture for stonewheel @stonewheel

1. 40mg/day
2. 30mg/day
3. 5mg/month
4. 30mg/day and No
5. 1mg/week
6. Good, no flares
7. August 31
8. Slight energy loss but rarely
I exercise a lot and push myself hard.
My diet is by choice very strict and started before PMR. Little to no sugar or salt. Vegan except fish and 4 times a year I treat myself to a steak, a burger, pulled pork or ribs. No dairy except plain high protein Greek yogurt and occasional cottage cheese. Lots of vegetables and vegetable protein powder 2x/day.
Also, 3 liters/quarts of water/day.

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@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.

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