Temporal Arteritis

Hello @hoosierlarry, Welcome to Connect. @ropnrose, @dadcue, @terrib2, @linda7 and others have discussed Actemra infusions in another discussion here - https://connect.mayoclinic.org/discussion/actemra-infusions/ and may have some experience to share.

When were you first diagnosed with Temporal Arteritis?

May 2025. Put on 4o mg Prednisone initially. Now down to 15 mg daily. At this does still able to work out daily. Only minimal Blood Pressure increase. Supposed to start Acterma infusions in August.
Trying to find out more about this drug and peoples experience with side effects from it.

You're really lucky to get down to 15 mg per day of prednisone so quickly. I think it took almost 6 months for me to get to that point after starting at 60.

I take weekly injections of Actemra instead of infusions. I haven't had any side effects, and it has allowed me to taper the prednisone down to 2 mg per day with no flares.

I agree that you are lucky to get to 15 mg of Prednisone so quickly. It took me 10 years and countless relapses to get to 15 mg of Prednisone. I'm currently doing Actemra infusions every 4 weeks. I was able to discontinue Prednisone 4 years ago. I'm still recovering from side effects from long term Prednisone use. I had many side effects from being treated with long term Prednisone but almost no side effects from long term Actemra.

I know Actemra is being used sooner these days in the USA. However, I think it is still being reserved for "relapsing" and/or "refractory" cases of Temporal Arteritis. Unless you have PMR symptoms and difficulty with Prednisone side effects, maybe Actemra can wait. Problems generally surface at Prednisone doses of 10 mg or less.

It does seem like your doctor is waiting until August. I don't know how long you should wait but the sooner you can get off Prednisone the better.
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oops ... meant this to reply to original poster @hoosierlarry

Doctor actually wanted to start the Actemra in July but Blue Cross insisted I be on Prednisone for three months before they would pay. Obviously because Prednisone is cheaper .
I’m have no pain anywhere. I’m actually working out 90 minutes a day on treadmill, elliptical , or spin class.
I’m going to ask doctor on 7/1 appointment is I should taper more on Prednisone to see what happens before starting new drug

Thanks for the info . Side effects of the Actemra is what I’m worried about

Diagnosed with GCA (temporal arteritis) February 2025, started 60 mg Prednisone. Started monthly ACTEMRA infusions March 2025, all covered by Original Medicare and Supplement. My fourth infusion was today, and so far no side effects at all…a very easy hour, and then it’s like it never happened. But it does allow for the Prednisone taper, which is now at 15mg. I am reducing 2.5mg per month until 10mg, and then maybe slower. ACTEMRA infusions are to continue monthly at least until off Prednisone, and then perhaps beyond,

I have had 6 Actemra infusions (one every 4 weeks). I have not had any side effects. The side effects from Prednisone were severe and prolonged. When I began my infusions, I was on 13 mg. day. Today, I am at 5. The Actemra has allowed me to step down 1 mg. every 2 weeks. I'm going to hold at 5 mg. until my rheumatologist appt. in mid-July. I've read that many people start getting side effects (pain/fatigue) from the lack of pred. Could be a cortisol situation. Overall, I am very pleased with the progress I have made and lack of side effects.

Thank you. I’m at 15mg of Pred but just was diagnosed in May. Seems like most folks taper down lower before starting the Actemra .
The Prednisone side effects have been minimal once I got lowered from 40 mg to 20 to 15 .
I actually thought that they totally took you off Prednisone once the Actemra started . I’ll ask my doctor about that next Tuesday

Actually the sooner you start Actemra, the better. It helps you to taper faster and with fewer flares. I was taking 60 mg a day of prednisone when I started Actemra.

It takes up to 2 months for Actemra to take full effect, so you need to be taking prednisone during that time to control your GCA (or PMR in some cases).

Also, you can't just stop taking prednisone when you start Actemra. Depending on the dose of prednisone and the amount of time you take it, your adrenal glands stop producing cortisol. I think any dose of 10 mg or higher (or maybe even lower) for more than a couple of weeks can shut down the adrenal glands. If you stop taking prednisone all at once, your body will not produce the cortisol you need, and it can make you extremely ill, or even kill you. So you have to slowly taper the dose of prednisone you take to allow your adrenal glands to start working again. For most people the adrenal glands start working again when the prednisone dose gets down to about 5 mg a day or a little lower. I have been tapering prednisone for a whole year to get down to 2 mg per day, and it will take almost 2 more months to get down to no prednisone, and that assumes I don't have a flare or a problem with adrenal insufficiency.

There are a lot of threads on this forum about how to taper prednisone safely so that you don't have a flare of your disease or run into problems with your adrenal glands not making enough cortisol.