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PMRGCAuk
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Medicare accepted my Actemra infusion claim!

Yeah, it is a good day. My Medicare part B accepted 100 %of my Actemra infusion claim. They paid everything but a little over $800, so my secondary which is AARP plan F will pay the rest.

It has been two weeks now since my first infusion and so far I have not had any problems. I truly at this point believe that I made the right decision on going on the Actemra therapy.

Three days after my infusionI was able to drop from 30mgs prednisone to 20mgs. This Sunday I will be able to drop down another 5mgs to 15mgs. From there my Rheumatologist will decide how much and how fast I will titrate down. She is watching me like a hawk.

Just a few days after my first titration I felt like a brick had been lifted off of my head. I have had the best days mentally that I have had since the beginning in November.

So all in all I am extremely happy with my decision. I just hope this continues to be a positive treatment.

One important piece of information about Medicare accepting this under plan B is that my Doc did put down that due to my poor eyesight that I needed to have the infusion vs self injections. Also I do have PMR/GCA with positive ANCA vasculitis.

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CRW-68,

Well done! I have been on Actemra for a year now and so far so good. It does help with the Tapering off of Prednisone but I believe you still need Prednisone (as per my Rheumy). Good luck and please keep us updated.

EI

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I also live in US and have been on Actemra for the past 10 months. Started with monthly infusions, then switched to weekly injections....my symptoms would creep back before the monthly infusions were due.

I’ve been able to get off methotrexate and pred dose is now 3mg daily. After three years, I was having considerable side effects from the pred and was unable to reduce without a flare. I’ve had no side effects whatever from the Actemra and my Part D insurance plus the drug company cover the cost. I hope it becomes more affordable because it’s been a godsend!

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Good for you!!! I see that you were diagnosed with GCA/PMR about 5 months ago and started on 60mgs of Prednisone. Two weeks ago you had your first Actemra. Why did your doctor wait almost five months to start you on Actemra? Was it concern about insurance?

Following the tapering schedule, when would you (hopefully) be off Pred? Any expectation as to when you might be off Actemra too?

I am very interested in your progress. Thanks for keeping us posted.

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From what I have read, my belief is a few reasons.

First, it only takes Prednisone a day to start taking effect. Actemra, a few weeks for full affect.

Secondly, if I understand correctly, is your chart notes need to show documentation that the Prednisone is not fully working. I noticed within the body of my chart note that my Rheumy notated that my ESR was starting to creep up even while on Prednisone after it had initially gone down.

I was officially diagnosed with PMR/GCA the first week in December at the hospital after teams for four days tried to figure out what was wrong with me. The hospital put me on 20 mgs of Prednisone .

I then saw my Rheumy later. She put me on the 60 mg dosage. That was January.

In March my Rheumy said that she would like to try the Actemra. I was given all of the literature to study and decide if that was something I wanted to do.

I had to skip my April appt for I could not drive myself the hour drive due to eyesight for husband had the flu.

I do wish I could have started the Actemra a month earlier.

It certainly is heartwarming hearing that so many others are having good experiences with Actemra.

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