My wife is suffering from gca type symptom , from last 15 months , ( biopsy could not be done ) treatment started,tapering from 60 mg with only 4 months actemra taken due to side effect ,now she is struggling to reduce prednisone from 10 mg to 9 mg ,from last 5 months with flare up -down she tried Methotrexate but stop due to side effect , Now doctor from last 3 months started ,injection DUPIXENT biweekly, ,does any one have any idea or experience of it , does it give relief or benefit in gca , or reducing steriod dose .I am sorry my wife have no benefit effect till date . I confused shall she continue with it , as dr advice . ?
And secondly, Is it safe to be on 10 mg continuously for more long period , if no other choice? I thanks for previous advices received in this forum, which help me to lot .🙏
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Rajuguide
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"Dupilumab, sold under the brand name Dupixent, is a monoclonal antibody blocking interleukin 4 and interleukin 13."
Neither interleukin 4 nor 13 have traditionally been associated with the inflammation in GCA. However, there are mentions in the literature of both in association with GCA patients though as far as I could see there have been no definitive studies.
However - I think you need to get out of your mindset of associating your wife's GCA-type symptoms with being GCA as we discuss it. You told us some months ago that they had done cytokine studies and found that her IL-13 level is high. They are now using a monoclonal antibody treatment which is specific for IL-13 and as such that should reduce the levels. You will have to wait and see if it does.
I have been on pred at well above 10mg/day for the last 3 years and most of the 13 years I have been n pred I have been at 10mg/day or above. It doesn't appear to have done me much harm. There are a few others on the forum who have needed doses of 10mg and above for considerable periods. If there is no other option - you have to accept it. It hasn't killed us yet.
I had no words to thanks you , I appreciate your deep knowledge in gca realated problem ; And you always guided and advice me , this time also you have clear my doubts, which was confusing me from last so many days
I had used methotrexate on a few occasions in an attempt to help me wean prednisone. I tried pills on 2 separate occasions and self injections on a third. The injection trial was to mitigate side effects the worst of which for me was a copper (like) metallic taste on my tongue, fatigue and a nausea . During this time frame 3 years +, I underwent a few orthopedic surgeries . For me and my PMR, it did not help me taper prednisone effectively but I did give the methotrexate a legitimate try ( pills and injections). Currently I am using injections of TNF inhibitor (tumor necrotic factor inhibitor) which had been effective with allowing prednisone taper. Hope this helps.. Sincere Blessing to you all!
It is only of any use in situations where tumour necrosis factor is involved. They did look at the cytokines - they do have some guide as to which inflammatory substances to attack.
Yes, Methotrexate does have some side effects, like nausea, loss of appetite, loss of sleep etc. So if experienced such, better to stop taking and ask for other options..
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