Hi . this is Groda again.
My Rheum wants me to start on Actemra for my GCA. He prescribed a Quantiferon TB Golf test (IGRA) before starting Actemra. Would like to know if anyone else had to have this test before starting Actemra.
Also, for those that were on Actemra, how long where you on it? Infusion or injection? Side effects and ultimate results. Did this bring CGA into remission. thanks for any advice.
Groda
Dear Groda, yes I had both, a Quantityferon TB test and a Mantoux tuberculin skin test before taking Actemra. Makes sense as the Interleukin-6 blockage by Actemra might reactivate latent tuberculosis. I am on Actremra for GCA (large vessel) since 2.5 years - now on 2 weeks injection (slowly increasing the period between two injections and hopefully can stop it in a year or so - but for me there is no need to hurry). I received Actemra directly after diagnosis and this allowed me fast tapering of prednisolone. I have no symptoms with Actemra and no side effects (sometimes cholesterol is a bit above the threshold) and live my normal life with full-time working and sport as before the disease.
Initially my rheumy said he would do it but I don't know if he did in the end. I didn't have the skin test - but mine was always excessive when we used it for research some years ago so not sure how accurate it would be anyway.
Actemra allows rapid tapering of the pred dose - but it is because it works on the receptors the IL-6 would occupy to cause the inflammation, It does not have any effect on the actual disease process itself but it is hoped that the immune system will stop producing the IL-6 over time. I do know quite a few who have required it for a few years before being able to stop.
Only the sub cutaneous injections were trialed and, as a result, approved for use in GCA, However, in the USA some insurances won't reimburse for the use of self-administered injections and insist on the monthly infusions being used in a clinical setting. Both approaches seem to work.
Hello, I live in the IS so the only way my insurance would pay for it was monthly infusions. I seem to be doing very well on it. It’s been a year. I was able to get to 1mg of prednisone but my GCA acted up. I am at 8 mg now decreasing 1mg a week. Once I get to give, my Rhumy said to stay there for a while. I think the actemera helps my PMR because I really have no inflammation anywhere except with the GCA. No body aches which I am so thankful for. Best of luck!
Your rheumy is aware that only half of GCA patients are able to get off pred entirely? Half require ongoing pred at a lower dose because there are at least 3 different underlying causes of the inflammation in GCA and the others besides IL-6 are found in half of patients. Actemra, as a biologic, is very specific and only works for IL-6 and not for the others.
I had both PMR and GCA . Actemra helped me wean off predisone, I went from 60m down to 0 in 5 months. I am certain I could not have tapered so quickly without the Actemra.
I did weekly self administered injections of Actemra for about a year, then tapered off by going every other week,then every third week, finally once a month. In all I was on Actemra for 1 yr and 9 months. No side effects from the Actemra ( unlike predisone). Have been off predisone for 3 yrs and off Actemra for about 1.5yrs and feeling great. Fingers crossed for the future.
What good news. Happy for you and hope the same happens for me. I have GCA and now down to 30Mg. Sleeping much better. I will go on Actemra in Dec. I am in Florida for Nov and half of Dec. I am having the Quantiferon TB Gold test before starting Actemra (rhuemie says I have to have this test first). I will go down by 5mg every 2 weeks and then hold at 20 mg til I get back home in Dec. When did you get rid of the moon face, if you had one?
Mine is full blown and I look like a pumpkin.
Actemra
Finishing with Actemra
Dizziness related to actemra or prednisone
Actemra
Anyone else on Actemra for PMR?
