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Aches and pains , what would you do ?
For PMR, (had it for 7 years) I've been on Kevzara for 4 months reducing from 7.5 to 5 mg of pred. The kevzara was finally starting to help . Then the dreaded lab test showed my wbc a bit under the normal low range. (4.6 from the rangrange 5.1- 10.8) And my liver enzymes a bit high (alt of .63, ast of 50) So my rheumatologist said to skip a month of kevzara to see if my numbers normalized., if they do I can go back on kevzara ... so I wake up now stiff and hurting, rheumatologist says stay at 5 mg. I go for my blood work 10 days from now on the 20th. So 10 more days of pain. I could use some tylenol , but I hate to use it everyday. Hot shower helps some, massaging helps some. I dont sleep well, as an example, I keep a glass of water on my night stand as sometimes I will wake up with what I call Cotton mouth. I'd rather lay there and suffer than reach for that glass. (I know it's going to hurt)
well that's enough whining, I'll just have to tough it out until my bloodwork gets done. I may just take a 7.5 today for some relief.... uuuugh.
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Hang in there, don’t let the disease beat you!
As for low numbers on Kevzara, my Dr had me space the shots 3 wks apart, after 6 wks retest nd I was back in range again. As for Tylenol, he told me it was ok to take Tylenol for Arthritis, 2 💊, up to 3 times a day. You might try the 2 in morning to get you over the hump. and if need be 2 at bedtime. Variations Worked for me.
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I had a similar problem with my WBC's and liver enzymes when I first started Actemra. I was told to skip one Actemra injection. I kept my Prednisone dose the same until Actemra was resumed. The safety profile of Kevzara is about the same as the safety profile for Actemra. The risk of side effects is nearly the same for both biologics.
My rhematologist said my WBC's were low but I wasn't at an increased risk of an infection as long as my absolute neutrophil count stayed normal. Neutrophils are white blood cells that act as your immune system’s first line of defense.
As for my liver enzymes being elevated ... I was referred to a liver specialist to get their opinion. The liver specialist determined my elevated liver enzymes were likely from non-alcoholic fatty liver disease (NAFLD, now often called Metabolic Dysfunction-Associated Steatotic Liver Disease or MASLD) caused by my chronic prednisone use.
If it makes you feel better ... my labs last week after more than 5 years of being continuously on Actemra were:
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ABS NEUTROPHIL
Result
2 K/uL
Reference range
1.7-7.0 K/uL
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AST*IC
Result
46 U/L (High)
Reference range
11-34 U/L
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ALT*IC
Result
75 U/L (High)
Reference range
< 54 U/L
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The main thing to know is that my labs are stable and aren't getting any worse. I can't remember the last time I had an infection. Some of the infections I had when I was still on Prednisone were brutal and seemed to persist forever.
@dadcue thanks, my numbers arnt that bad either, they say liver enzymes can be up to 3 x normal. My absolute neutrophils are still in the normal range at 2.5. Before kevzara it was 5 or 6. So I'm still ok there.
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1 Reaction@ronludington
Seven years of PMR is a long time. I assume you were on prednisone the entire time. Even with Kevzara, it might take you a while to taper off prednisone as you will likely have some secondary adrenal insufficiency.
Just be aware that symptoms of secondary adrenal insufficiency can mimic PMR. I think when my cortisol level was too low after I reached 5 mg of Prednisone, it was difficult for my body to regulate inflammation. Kevzara should help to control the inflammation. However, as the prednisone dosage is reduced, the body needs time to resume its own adequate cortisol production.
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3 ReactionsI'm Billy B and first time posting. 77yo male on 5 mg pred that wears off in pm. 1 tab of ibuprofen gives me decent rest at night . Has anyone ever used celebrex vs ibuprofen to go along with pred for the aches and discomfort?
@dadcue I was on and off a few times, I would reduce to 0 and then a few months later the pmr would return. The first taper 60 to 0 went pretty well. I had roughly 5 months of being free before it came back.
But I agree, I may some adrenal insufficiency, but they don't want to check fir that.
Welcome Billy B @engramb318, Prednisone pretty much took care of my aches and discomfort unless I was tapering to a lower dose or tapering too fast. You aren't alone. You might want to scan through the other posts and discussions where members have mentioned using celebrex along with prednisone. Here's a search of Connect listing the different discussions and comments from members - https://connect.mayoclinic.org/search/.
Some members have found that splitting their dose of prednisone and taking some later in the day helped. Have you ever tried that or discussed with it your rheumatologist for alternatives that may help?
Also, my Rehumy suggested Tylenol for Arthritis as an OTC.