Are others with GCA and PMR on Tyenne Monthly Infusions?

@caroljeand How long ago was the surgery? I had foot surgery decades ago and the surgeon did disturb the nerves in the area. It took about 15 months for it to calm down. He suggested I take B12 supplements since your nerves use B12 for healing. Careful about B Complex because not all the B vitamins are water soluble like B12.
I also had similar problems following hand surgery. Just a lot of nerves in hands and feet.

@jabrown0407
My foot surgery was 25 years ago and there has been no improvement or change in the sensation. I do not take any supplements for it, just my necessary ones. I have come to accept it as the cost of doing surgery. That’s why I will opt out of surgery if I can help it.

Yes, I just started.

Hi, Julie,

What is the source of your information that CRP and ESR labs are no longer trusted measurements while one is on Tyenne? I’ve been on monthly biologic infusions for PMR for over a year. I was briefly on Actemra, now on Tyenne, following many months of Prednisone. I experience muscle weakness and pain in my thighs and hip area that I didn’t have when on Prednisone. My rheumatologist says it isn’t PMR because of my lab results. I’d love to know what it is!

@jck51
Hi @jck51
My Rheumatologist recently told me so directly. At a recent routine appointment with my Rheum, I mentioned that I was glad that my ongoing labs would catch any relapse because I was feeling some of the early symptoms (now recognized in retrospect) of my PMR/GCA and was worried that I might be one of those people who can relapse even while on Tyenne, let alone in tweaking it down or taking a break from it. Doc then said that the CRP & ESR labs don't work as if one was not on Tyenne. (Google Tyenne relapse) I'm most worried about GCA, of course, since it is more serious than PMR (permanent blindness, aneurysms). I wanted to be vigilant about any symptoms creeping in without being a "hypochondriac" which I've never been (kind of the opposite to a fault). She said that when a person is on Tyenne treatments, that the Tyenne suppresses reliable results in CRP and ESR labs--can't remember her exact words, but something like "they don't work". Why I didn't ask her the question, "Then why do they still do these labs?" Next appointment will question. I'm assuming they might still yield some useful idea? July 2024 my CRP was 159! Diagnosed with PMR/CGA, classic symptoms. Sept 2024 CRP < 1.0 after 60mg Prednisone started end of July 2024. Prednisone slowly tapered to 0 in July 2025. Tyenne was started Sept. 2024. Nov 2025 CRP< 3.0 onward to now. Monthly Tyenne continues. They didn't do my ESR until October 2024 after I was on high dose Pred, so that lab was not indicative of PMR/GCA due to daily hd steroid treatment.
Like you, I experience muscle weakness (so unlike my prior, undiagnosed self!) in my thighs, but not really pain. My hips have some pain, though & also my elbows. And pain & weakness in my shoulder girdle. I am aware of these symptoms as I try to ignore them and do everything (albeit sometimes moderated) I used to and want to do. I have a physical job (caregiver for elderly). All the lifting, carrying, cooking, chopping, slicing, washing, weeding, housework..... I'm sure it adds to my aches, whether muscle or joint, but I think the key is to keep active and be aware of limits, moderating personal overdo tendencies. I notice in walking back to my car after work that my legs feel heavy and weak. But I just keep going, unlike when I crashed & was diagnosed and could barely walk before wanting to just crawl on all 4s from my bed to the bathroom (before Dx). SO MANY abnormals labs then!!!

I may never go back to how I felt pre-diagnosis (likely), but I am grateful that I can take long, hilly walks (6 miles) and even though I "feel" it, especially at first, I seem to feel better the longer I walk & exert myself (hills) up to a reasonable distance for someone with PMR... So, while legs start out feeling weak, they still can do what I want them to do and end up feeling better after I'm finished. I think we feel it most after being sedentary (and, say, go up a set of stairs?).

Ask your rheumatologist what s/he knows about the usefulness of CRP & other labs while on Tyenne and report back (-: . I will too.

Aside: I had the classic symptoms (most) of GCA, along with PMR, but since they scheduled my temporal artery biopsy 11 days after I had started 60mg Prednisone (urgent to start asap), even knowing that Prednisone for this long could make the biopsy a false negative, it did come back negative, but they knew that I had GCA from the frightening symptoms. THAT was a biopsy I wish I had known to say "NO" to since they were going to treat me anyway and I think they should have either found a way to schedule it at the outset (fat chance!) or not do it at all--waste of time/skill/talent when known to come back false negative.

In all the testing & scanning, though, they did find a small ACA brain aneurysm that they are monitoring, thankfully no growth in 1 year. GCA can cause anuerysms. However, no way to know when this aneurysm came on.

Diagnosed with GCA Jan 2025, confirmed with temporal ultrasound at Univ of WA GCA fast-track clinic. Started 60 mg prednisone, and Actemra (now Tyenne_. Once treatment began, my CRP and ESR went to 0 and 1 respectively, and GCA symptoms disappeared. My understanding is that CRP and ESR are so low because the treatment reduces the inflammation, but does not “cure” the underlying disease., and that GCA will resolve in its own time. Still, I am told that if there is a flare while on the treatment, the numbers will likely go up, so hence the continuing blood tests. Aside from all of this, I have PMR symptoms, but also have hip osteoarthritis, same symptoms of pelvic girdle, gluteal pain. Doc thinks maybe not PMR, but she is not sure. I am trying PT to see if it helps.

@sjc123
I've been taking weekly Actemra injections for a year and a half, and my CRP and ESR values are like yours, 0 and 1. Here is an explanation of why the values are so low and why you can't trust them (from Google AI):

"Does Actemra cause misleading ESR and CRP values?

Yes, Actemra (tocilizumab) causes significantly lower and often "misleading" C-reactive protein (CRP) and erythrocyte sedimentation rate (ESR) values. Because Actemra works by blocking the IL-6 receptor—a key driver of inflammation that signals the liver to produce these proteins—these markers can remain in the normal range even when a patient is experiencing a disease flare or a serious infection.

Key details on how Actemra affects these tests:

Rapid Suppression: CRP and ESR levels drop rapidly after starting Actemra, often within weeks, regardless of whether the underlying disease (such as RA or GCA) is completely under control.

Masking Infections: Actemra can completely suppress CRP production, meaning a normal result cannot be used to rule out serious infections or sepsis in patients taking the medication.

Disease Monitoring: Because these markers are suppressed, they are often considered unreliable for monitoring disease activity in patients taking Actemra. Doctors often rely more on clinical symptoms (pain, fatigue, stiffness) rather than blood tests to determine if a condition like Giant Cell Arteritis (GCA) or Rheumatoid Arthritis (RA) is flaring.

Sign of Compliance: Because the drug is so effective at lowering these markers, a rise in CRP/ESR while on Actemra might actually indicate that the medication is not being taken regularly (poor compliance) rather than just a flare of disease, as indicated in user discussions.
Important Safety Note: If you are on Actemra, do not rely solely on normal CRP/ESR results to determine if you are healthy, especially if you have symptoms of infection (fever, chills, severe cough). "

I think doctors keep testing ESR and CRP values to be sure that the Actemra is working as expected and the patient is really taking the Actemra.

@jeff97

I'm an example for "Sign of Compliance."

While my rheumatologist knew I was stretching the time between my Actemra infusions from every 4 weeks to 7 weeks --- there was a significant increase in my CRP and ESR. I denied having an increase in pain as I approached 7 weeks between infusions but based on my inflammatory markers, I was told not to go that long without an infusion.

What people fail to mention is the half life of Actemra is very long. Once again according to artificial intelligence:

"Actemra (tocilizumab) stays in your system for a prolonged period, typically for 2 to 4 months (approximately 86 to 107 days) after the last dose. This long duration is because Actemra has an elimination half-life of roughly 21.5 days, meaning it takes about 3 to 3.5 months for the body to eliminate it completely."
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It is no different with Prednisone except that the half life of Prednisone is very short. Inflammation markers will increase if you don't take Prednisone every day. People on Prednisone don't have reliable ESR and CRP either.

"Diagnostic Impact: Because prednisone works quickly to lower these markers, it can interfere with diagnosing conditions that rely on high initial ESR/CRP, such as Giant Cell Arteritis (GCA) or Polymyalgia Rheumatica (PMR)."
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Another reason ESR and CRP are still checked is to determine if Actemra is still working. If it isn't working because of antibody formation against Actemra a persons inflammation markers will likely increase. If CRP and/or ESR levels, which were previously suppressed, begin to rise, it often indicates that the drug is losing its effect.

Once again ... according to artificial intelligence:
"Indicator of Lost Efficacy: Actemra typically reduces CRP and ESR levels to very low levels. If these markers begin to rise in a patient who was previously well-controlled, it is often a sign that the drug is no longer working, potentially due to antibody formation or other factors."

@jeff97
Good Points @jeff97. Thanks.

@dadcue
Also good points, thanks. These last two posts are the type of information we really need to understand.