The American College of Rheumatology/Vasculitis Foundation clinical practice guidelines for GCA state: "Recommendation: For patients with newly diagnosed GCA, we conditionally recommend the use of oral glucocorticoids with tocilizumab (Actemra is the brand name of tocilizumab) over oral glucocorticoids alone. A trial published in 2017 (8) demonstrated that tocilizumab has a significant glucocorticoid-sparing effect in GCA, and thus, tocilizumab should be considered for initial treatment. However, methotrexate with glucocorticoids, as well as glucocorticoids alone, can also be considered as initial treatment for newly diagnosed GCA. The decision to treat with tocilizumab and glucocorticoids, methotrexate and glucocorticoids, or glucocorticoid monotherapy for initial therapy should be made based on the physician’s experience and the patient’s clinical condition, values, and preferences. Lack of long-term follow-up data on tocilizumab and cost may limit its use (8,54). Abatacept with glucocorticoids can also be considered if these other agents are not effective (55)." You can find the complete guidelines here: www.vasculitisfoundation.org/giant-cell-arteritis-gca-takayasu-arteritis-tak-guidelines/ You can find information on Actemra (tocilizumab) on the treatment page of our website www.vasculitisfoundation.org/treatments-research/treatments/other-treatments/ and in this guide from the American College of Rheumatology and the Association of Rheumatology Professionals assets.contentstack.io/v3/assets/bltee37abb6b278ab2c/bltab0e08fe606e0a95/medication-guide-tocilizumab-actemra.pdf Here is information taken from the GCA page of our website "In 2017, the Food and Drug Administration (FDA) approved the use of the biologic drug tocilizumab to treat adults with GCA, signaling the first drug approved to treat this disease in more than 50 years. Biologic medications are complex proteins derived from living organisms. Biologics target certain parts of the immune system to control inflammation. Tocilizumab targets a pro-inflammatory protein, interleukin 6 (IL-6), which is known to be involved in GCA. In clinical studies, tocilizumab-used in combination with tapering doses of glucocorticoids-helped patients achieve sustained disease remission while significantly reducing their exposure to steroids.Occasionally, other medications are used to treat GCA. Methotrexate, a drug commonly used to treat rheumatoid arthritis, is sometimes used to help reduce relapses (flares) in GCA." www.vasculitisfoundation.org/education/vasculitis-types/giant-cell-arteritis/
We are so sorry to hear you had a delay in diagnosis that permanently impacted your vision. Prompt diagnosis and treatment of GCA is so important for preserving sight. In fact, current treatment guidelines emphasize that treatment begin immediately if GCA is suspected - even as testing continues to confirm the diagnosis. Your experience highlights the importance of raising awareness of GCA and the need for prompt treatment to preserve vision.
What do you think about the Injection Actemra?
The American College of Rheumatology/Vasculitis Foundation clinical practice guidelines for GCA state: "Recommendation: For patients with newly diagnosed GCA, we conditionally recommend the use of oral glucocorticoids with tocilizumab (Actemra is the brand name of tocilizumab) over oral glucocorticoids alone.
A trial published in 2017 (8) demonstrated that tocilizumab has a significant glucocorticoid-sparing effect in GCA, and thus, tocilizumab should be considered for initial treatment. However, methotrexate with glucocorticoids, as well as glucocorticoids alone, can also be considered as initial treatment for newly diagnosed GCA. The decision to treat with tocilizumab and glucocorticoids, methotrexate and glucocorticoids, or glucocorticoid monotherapy for initial therapy should be made based on the physician’s experience and the patient’s clinical condition, values, and preferences. Lack of long-term follow-up data on tocilizumab and cost may limit its use (8,54). Abatacept with glucocorticoids can also be considered if these other agents are not effective (55)." You can find the complete guidelines here: www.vasculitisfoundation.org/giant-cell-arteritis-gca-takayasu-arteritis-tak-guidelines/
You can find information on Actemra (tocilizumab) on the treatment page of our website www.vasculitisfoundation.org/treatments-research/treatments/other-treatments/
and in this guide from the American College of Rheumatology and the Association of Rheumatology Professionals assets.contentstack.io/v3/assets/bltee37abb6b278ab2c/bltab0e08fe606e0a95/medication-guide-tocilizumab-actemra.pdf
Here is information taken from the GCA page of our website "In 2017, the Food and Drug Administration (FDA) approved the use of the biologic drug tocilizumab to treat adults with GCA, signaling the first drug approved to treat this disease in more than 50 years. Biologic medications are complex proteins derived from living organisms. Biologics target certain parts of the immune system to control inflammation. Tocilizumab targets a pro-inflammatory protein, interleukin 6 (IL-6), which is known to be involved in GCA.
In clinical studies, tocilizumab-used in combination with tapering doses of glucocorticoids-helped patients achieve sustained disease remission while significantly reducing their exposure to steroids.Occasionally, other medications are used to treat GCA. Methotrexate, a drug commonly used to treat rheumatoid arthritis, is sometimes used to help reduce relapses (flares) in GCA." www.vasculitisfoundation.org/education/vasculitis-types/giant-cell-arteritis/
Still not recognized by physicians quickly enough saw 3 physicians the fourth knew right away,too late for my left eye
We are so sorry to hear you had a delay in diagnosis that permanently impacted your vision. Prompt diagnosis and treatment of GCA is so important for preserving sight. In fact, current treatment guidelines emphasize that treatment begin immediately if GCA is suspected - even as testing continues to confirm the diagnosis. Your experience highlights the importance of raising awareness of GCA and the need for prompt treatment to preserve vision.