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Are others with GCA and PMR on Tyenne Monthly Infusions?
Polymyalgia Rheumatica (PMR) | Last Active: Mar 14 2:01pm | Replies (58)Comment receiving replies
@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.
Replies to "@sjc123 I've been taking weekly Actemra injections for a year and a half, and my CRP..."
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@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."