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@ropnrose
Actemra. I haven't read about Actemra but will. Thanks for sharing your story of success. I will share your story with my friend with GCA.
How long will you be on Actemra?
Replies to "@ropnrose Actemra. I haven't read about Actemra but will. Thanks for sharing your story of success...."
@leonalawrence I will be on the current dosage for 2 years. My rheumatologist will then taper my dosage down. I don't know how long the taper will be. There are studies that show, if Actemra is stopped too soon, a relapse can occur.
fyi-I am on Medicare and it and my supplement pay for 100% of the monthly infusions. Actemra also can be administered by self injections at home. My Part D insurance does not cover it. Even if it did, I would have a co-pay. By going the infusion route in a medical setting, it is covered and I don't have any out of pocket. Good luck to your friend.
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@leonalawrence
In Part #1 of the GiACTA trial, the effectiveness of Actemra (tocilizumab) for GCA was demonstrated. Actemra was continued for 52 weeks, allowing remission to be achieved in about half of the patients. After discontinuation of Actemra, half of the patients relapsed, leading to the question of how long should Actemra be continued?
https://pubmed.ncbi.nlm.nih.gov/28745999/
Additional research showed that remission could be restored when Actemra was restarted.
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My personal experience with Actemra suggests treatment can be continued "indefinitely" because I'm into my 7th year of taking Actemra. I relapse when Actemra is stopped but some patients are able to discontinue Actemra after one year.
I don't have any flares as long as Actemra continues. I was on Prednisone for 12 years with countless flares before Actemra was tried. I had flares even when I was still taking prednisone and I never could taper off prednisone in 12 years.
The biggest change for me personally is that I don't anywhere near the side effects that Prednisone caused me, Not only was Prednisone stopped ... I was able to discontinue about 10 additional medications being used to prevent or treat side effects from Prednisone.