Just posting because I am pleased to see research, new studies, and updated guidelines (related to GCA and/or PMR) being conducted, discussed and released!
Apparently, there will be new recommendations presented that will offer guidelines, "...for everything from diagnostic tests such as serology, imaging and biopsy, to remission induction and maintenance therapies, to managing refractory disease, to possible surgery."
*{A biologic drug (biologics) is a product that is produced from living organisms or contain components of living organisms. Biologic drugs include a wide variety of products derived from human, animal, or microorganisms by using biotechnology.}
You’ve found a good site there. Thanks for posting. I wonder how many years the research and practise guidelines it will take to filter down to the UK NHS?
I have a PET scan coming up to see the pattern of inflammation.
This is a question I have had regarding the GCA side of the often paired PMR- GCA. Rituximab is biologics used to treat RA and Vasculitis and I have wondered why it’s not being used in the UK for this .
I am on it currently for RA - Lupus spectrum clotting disease, which is progressive and refractory, and now an unspecified mild Vasculitis. It’s systemic , but not rapid nor horrific. It’s just slowly progressing and causing neuro problems . The Vasculitis is most likely just tied to my auto immune clotting disorder.
The problem is i will need very long term steroids ( possibly indefinitely) to control the seizures and hallucinations - which are more like visual confabulation- and migraines . The hope is the Rituximab - very aggression therapeutic dosing and frequency- will reduce the antibodies - and therefore the swelling - and the need to the steroids .
Rituximab is used in the UK - but for very specific cases. Vasculitis is not just vasculitis - there are a lot of different underlying causes of inflammation in arteries. There is no point using a drug that isn;t specific for the underlying cause. If you go to the VasculitisUK forum you will find patients who ARE on rituximab. They don't have GCA.
Although cell-mediated autoimmunity has traditionally been the focus of pathogenesis and treatment studies in GCA, recent data also suggest an emerging role for B cells in this disease. The distribution and homeostasis of B cells in active GCA appears disturbed, and potentially contributes to an enhanced IL-6 reponse. In addition, levels of B-cell-activating factor in GCA patients appear to directly correlate with disease activity. Thus far, only two published cases in the literature describe the use of rituximab in refractory GCA patients . Improvements in vasculitic manifestations were observed in both cases, but one patient required intensive-care-unit admission shortly postinfusion due to lower respiratory tract infection. In both reported cases, follow up was limited to 6 months or less, therefore, little is known regarding the long-term efficacy, glucocorticoid-sparing effect, or safety profile of rituximab in these patients."
Until pilot studies show there is a benefit, no longer term studies can be contemplated for any drug. There is little to suggest that rituximab would benefit the majority of patients - there is not a lot of suggestion that B-cells are implicated in all GCA patients. Use of monoclonal antibodies (MABs) is not simple - they are targeted drugs, they work for specific underlying mechanisms.
There are 14 (?) subsets or something like this I think. I’m on a steep learning curve still.
It’s not at all easy to get approval for biologics.
You must meet strict criteria set forth by insurance companies and your specialist ( never internist) would be the one to know if you meet those criteria. ( the insurance companies control the approvals.)
Exactly - the theory takes a long time to translate to practice. And while many people bemoan the adverse effects of steroids, the potential adverse effects of biologics are IMHO far worse. They are not something to "just try" - you have to know there is a possibility they will work for the case in question before you expose a patient to potentially fatal effects.
I'm not sure what the consultant thinks about the GCA - the symptom I'm talking about is the intermittent pain up the side of my head, in my temple, which is where it was when I was first diagnosed. It can be quite severe, but usually doesn't last long.
Thanks so much for posting this link. I look forward to seeing the new guidelines. After nearly two years with GCA, on a prednisone roller-coaster, I have a new Rheumatologist who just started me on Actemra. I am feeling optimistic, finally!
I wouldn't hold my breath! The new guidelines for GCA which have been drawn up to replace the 2010 ones have been under discussion for over 2 years now! Rheumies seem to have a lot of difficulty in achieving a consensus!
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I need info about long-term symptoms and treatment of GCA and vasculitis
Dr Sarah Mackie and The Target Consortium paper:
Safe travel
Biologics
Leflunomide?
