I was fine till doctor claimed I’m in remission

[nallufl24]

I need your advice again. I have been doing great on only Actemra for the last 2 years. 8 months ago rheumatologist cut my dose in half. I was still doing great til he wanted me to get my infusions every 8 weeks instead of 4. I lasted 6 weeks before my symptoms came back. I called and because my inflammation markers were still in normal range he wanted me to go for 8 weeks again. That time I barely made it to 4 weeks. I told him I was not in remission and wanted to go back to 4 weeks. He agreed. This time I only made it to 3 weeks. I haven’t called him because my next infusion is scheduled in 5 days and I won’t be able to get in before then anyway.

My question is I think he screwed things up by wanting me to go 8 weeks. I’m now wondering if I should go back up to the full dose of Actemra again.

I’ve never done this but I took a 1 mg dose of prednisone today. It actually helped but not completely. I have some 5 mg left. I’m wondering if I should take the 5 mg the next few days til my infusion. After this next infusion, if my symptoms come back too soon again I’ll ask him to up back to my original dose of Actemra.

I can deal with the headache and ear pain. It’s not severe. However, I’m afraid of what damage I might be doing by not getting the inflammation under control. Will I be making a mistake by taking 5 mg prednisone the next few days?

[Grammy80]

I think your instincts are right on target. I've been on weekly injections of Actemra since 2019...and it has been a lifesaver for me. Can you get the Epipen instead of having infusions...I do not know why one is chosen over the other.....but I see you are in the States as I am. I got to 1 mg of pred and Actemra, hit a bump and am now on 10 per day. I can't advise you, of course, but hypothetically, if it were me, I'd be taking some pred these next few days.

I have a GCA friend in Maine, well PMR/GCA and she was doing weekly injections of Actemra when I met her in 2016. Now, she injects every other week. She's 87 and does well though not living pain-free. She's going to discuss going back to weekly. You know you~💞

[nallufl24 in reply to Grammy80]

Thank you Grammy80. The injections were going to cost me $1600 every 4 weeks because my insurance would only pay 40%. My infusions are covered in full. That is the reason.

[Grammy80 in reply to nallufl24]

And an excellent one indeed. If my insurance didn't pay for mine in full (I pay $45 in January) I'd be at the hospital looking for an IV pole and a needle! Wise woman...💞

[christine2715]

I had managed to take my Actemra every 5 weeks for a short while but when i reduced pred below 3mg had flare and went up and down by an odd 1mg for som3 time. Had to go up to 7.5mg for an operation and now i am on two weekly actemra and down to 5mg. Not sure if any of this helps.

[nallufl24]

yes it does help Christine2715. Thanks.

[PMRpro Ambassador]

I don't think anyone here is really in a position to make calls on Actemra - but I do know that it only works 100% for half of patients with GCA, Why this is beyond the comprehension of some rheumies is beyond me but it seems quite widespread. The clinical trials for Actemra in GCA did not include the infusions - so technically, I don't think the infusions are approved. However - they are used in the USA and your insurance covers them and that is the reality to be dealt with.

This insurance conundrum seems crazy to me - the infusions MUST work out more expensive by the time the costs of administering the infusion is included. But it is well known that the costs of the US medical system are funding a life of Riley for the insurance companies ...

If the infusions are not holding the symptoms for more than a month he must agree to go back to monthly. I'm struggling a bit to work out what might be happening though - other than that the GCA is flaring in the same way as it might if you were off Actemra altogether. It HAS been in remission or close to but has wakened up again. It does happen - the follow-up studies showed that and also showed that putting the patient back on Actemra got it under control again. If he doesn't put you back to the basic monthly infusions he is likely to have to put you back on a lot more pred - and if he doesn't listen to you and believe you, I'm not sure what it says about the relationship between you as doctor and patient.

[nallufl24 in reply to PMRpro]

Thank you. Yes, our insurance is crazy! It is definitely more expensive for the infusions. Our Medicare system will pay for infusions which is triple the cost but the injections are a drug which is separate and won’t be paid in full. We are fortunate in this country not to have any restrictions on what drugs we take as long as we can afford them and it’s very sad because many people here cannot afford their drugs especially the elderly.

[Daisylady62 in reply to nallufl24]

Hi there, I too have GCA and am in the states. Actemra has a co pay program that you should check to see if you are eligible for. It works with insurance but Im not sure how or if it will work with medicare. I pay 5$ per month for 4 injection pens. Here is the link if you are interested. Good luck with it all! Racopay.com

[nallufl24 in reply to Daisylady62]

It does not work with Medicare. I’ve tried but thank you