GCA and use of actemra iv

[casse]

Can anyone tell me that is on at actemra how they are making out? Doctor to review it again with me tomorrow. My insurance said they would cover it since it's done at a networking hospital once a month infusion. Do you immediately drop quickly the prednisones when you start the act Tamar how they are making out? Doctor to review it again with me tomorrow. My insurance said they would cover it since it's done at a networking hospital once a month infusion. Do you immediately drop quickly the prednisones when you start the actemra currently on 34 mg do to drop to 33 in two days. Only going down 1 mg every three weeks and now has started going down 1 mg weekly after this last flair. As always thank you guys for all your knowledge and help much much appreciated!

[Celtic PMRGCAuk volunteer]

casse, here in the UK, we are still awaiting publication of the results of a large-scale trial into Toxilizumab in the treatment of GCA. Until then, it hasn't been officially approved in the case of GCA although is approved and prescribed for cases of rheumatoid arthritis. However, a few people struggling to reduce Prednisolone have been started on this drug, so you may get some replies. As far as I'm aware the infusions are given alongside treatment with Pred, with the Pred being gradually reduced depending on the success of the Toxilizumab. Hopefully, someone will come along with their personal experience of taking this drug, but meanwhile I think you will have to be guided by those treating you. I do hope it proves successful for you.

[casse in reply to Celtic]

Thank you so much for this information will find out more tomorrow I guess

[PMRpro Ambassador]

I think it is unlikely you will drop the pred very quickly - I think they reduced over a period of about 6 months in the trial, which is far faster than would be normal without Actrema but the criteria were similar in that they monitored for return of symptoms. That remains the basic approach - just it is hoped the drug will make that process quicker and with fewer flares.

[casse in reply to PMRpro]

Thank you for your response my eye doctor in Philadelphia said he had patients with GCA with really good results just worried about being on two bad drugs at same time with only one kidney. Thinking if I can continue to reduce 1 mg a week in 35 weeks maybe be off which will be two years starting with 60 mg. Hard to figure out which is the worst of two evils I guess. Again thank you.

[Celtic PMRGCAuk volunteer in reply to casse]

casse, I can so understand your concern about taking Toxilizumab together with steroids when you have only one kidney as I also have just one kidney and am wary of everything pill-wise. However, in the case of steroids, they are often given to treat patients with kidney disease. As for Toxilizumab, it is the liver that is mentioned in the list of possible side effects as something to look our for, and for this reason liver function tests are carried out every month or so. As far as the kidney is concerned, the blurb mentions that Toxilizumab should be used with caution in moderate to severely decreased kidney function. But the list of warnings with almost every drug on the market includes this caution! Just ensure that those treating you are aware that you have a sole kidney and have up-to-date blood test results kidney-wise to see that your function is stable, especially the eGFR rate - my eGFR is low at 39-41 at recent tests, and reducing (Chronic Kidney Disease Stage 3b). So ask the questions and hopefully those treating you will come up with positive and reassuring answers.

[casse]

Thanks Celtic. Saw rheumatologist yesterday and she is willing to wait till after I get the cataract surgery once me to continue on the 34 as it would be too much with the surgery she said I'm still hoping maybe we can wean down again I've had to flares in the last two years. Think the side effects are very similar to prednisone as far as diabetes which I now have osteoporosis, also loss of hair etc. And I heard it's a slow process too with both drugs. Just praying that I can wean down soon as three doctors told me I've got to get off of the prednisone becsuse it will kill me. Again thank you for you for this info.😉