stopping Actemera

[Plains]

hello, I posted a few weeks ago about my problem getting my infusion early. I finally got them to agree to do it one day early having to leave two days late for my trip. I see a new Rheumatologist tomorrow. All my markers are very very low. I am seriously thinking of skipping the infusion. If will mean I will be seven weeks without it. I am taking 8 1/2 mg of prednisone and have no pain anywhere, including my head.

I am curious to see what some of you think about this. I have been free of body pain for over a year and even stand at my parting job for 7 hours without any problems.

thank you

[Sharitone]

I don't think anyone will want to advise you to skip your infusion against medical advice.

However, I have had two periods when I had to stop the Actemra for a few weeks because of Covid, then pneumonia. I think the longer gap was 5 weeks. Nothing terrible happened!

[Plains in reply to Sharitone]

Thank you this is helpful. Are you being treated for both PMR and GCA?

[PMRpro Ambassador]

Your markers are very very low because that is the way Actemra works, it does not mean that your GCA is not active. The ESR/sed rate and CRP cannot be used to monitor disease activity when you are on Actemra.

[Plains in reply to PMRpro]

Thank you. My new doc just cancelled my appointment for tomorrow the second time. I am going to get the infusion before I go.

[Plains in reply to PMRpro]

How do you ever know you can get off actemera unless you stop it?

[PMRpro Ambassador in reply to Plains]

You don't. But the way to go about it is to extend the time between injections from one week, to two, three and so on. The infusions are not actually approved for GCA as far as I know, no clinical studies were done with them at least.

[Plains in reply to PMRpro]

Maybe the infusions are keeping the PMR at bay or maybe it is in remission. My next scheduled appointment with the new Rhumy is Feb 28th. I just would rather be on just one drug. I was able to get to 1mg at one time. Now if I can get to 5 I am staying there. My last Rhumy suggested this.

[LemonZest11]

Why do you want to stop the infusions if they are working? I would have thought that you'd be focused on reducing your pred dose, isn't that why you are on it? Why rock the boat when you're feeling so well?

[Plains in reply to LemonZest11]

I am not sure the actemera is working, it may be the prednisone? I will not know unless I stop it or maybe extend the time of the infusions. There must be some information or people that have done this. Especially if in the UK you could only be on it for a year. I know there is a risk of having pain return as well as inflammation. Well, I hope the new doc is well educated on both. I was informed he is the best in the area so we shall see.,

[DorsetLady PMRGCAuk volunteer in reply to Plains]

There must be some information or people that have done this.

Limited info - certainly in UK for both time on it, and number of patient prescribed it (very strict conditions). And as PMRpro is always saying it’s not a magic bullet for everyone, so some may not have got much relief from it anyway.

If you want information, you’re more likely to find it your side of the pond…

[LemonZest11 in reply to Plains]

But aren't you on Actemra to help you reduce your dose of pred? That seems to be the main benefit, although it doesn't work for everyone. I've been injecting for 3 years now. It enabled me to reduce and then eliminate pred altogether. It's been 44 weeks since I took my last, measly .25mg, after an extensive taper. That is the reason I took Actemra. Why do you use it?

[Plains in reply to LemonZest11]

Yes, it was to reduce my prednisone. It worked very well until it didn’t. It only address one part or the GCA and the prednisone takes care of the rest. I hear of people going into remission for both PMR and GCA. I am just trying to figure out how people get there. If you just continue to take the drugs you will never know, in my opinion. These are the questions I have and perhaps the new doctor will give me feedback.

[PMRpro Ambassador in reply to Plains]

That is the entire point of a) a slow taper of pred and b) a reduction in the Actemra frequency. Actemra infusions are usually used for inflammatory arthritis which doesn't go away and you continue using it. The injections are far more suitable for PMR/GCA because you start with weekly and then slowly extend the time between injections until either you have no pred and very long periods between injections OR symptoms reappear. I know some insurers in the USA won't reimburse for injections, only infusions which must be done in the clinical setting so actually must be more expensive - but that is a US situation.

[Plains in reply to PMRpro]

Yes, you are correct. Weekly injection would cost me 1,700 a month. I can’t afford that. Medicare pays for the infusions, which are 5,000 a month. It’s sounds crazy. If they reduced the price of the weekly injection, they would save thousands of dollars.

[PMRpro Ambassador in reply to Plains]

I read an article a few weeks ago that the main problem relating to costs in the US healthcare system has nothing to do with Big Pharma who usually get castigated but lies at the door of the fundholders ...

[nallufl24 in reply to Plains]

I am on only Actemra for the past 2 years. It helped me tremendously. I was able to get off prednisone in 7 months. I felt like a million dollars. My doctor thought for sure I was in remission so he halved my dosage. I continued to feel great. So he wanted me to extend the time between infusions. By 6 weeks I was starting to feel headaches and ear pain. I realized I was not in remission after all. I’m back to getting monthly infusions although still on only half dose. I feel great again.

My point is you won’t know if the Actemra is working unless you stop it. I would get off the prednisone first then try to reduce the Actemra.

[Plains in reply to nallufl24]

Thank you soooo much for this information! Very much appreciated!!