Anyone else on Actemra for PMR?

[Terry615]

After two and a half years of trying to reduce pred doseage for PRM (I’m 72 and have osteoporosis) my rheumatologist got me approved for Actemra. Before adding Actemra, I couldn’t get below 10 mg pred daily (along with weekly methotrdxate) without a flare.

I began monthly Actemra infusions in August 2017, then my doctor switched me to injections every two weeks beginning early December. Since mid-December, the results have been amazing. It took a little while to be effective, but I’m now down to 3 mg pred daily. Hope to be off completely soon. I know my doctor had to work through some obstacles with the pharm company to make it affordable, but it’s worked well for me. I still have some shoulder and hip discomfort, but greatly improved.

Has anyone else used this drug?

[Longtimer]

Wonderful to hear that, keep well☺

[SheffieldJane]

Are you in the U.K.? If so your Rheumatologist is a bit of a star.

I think they are definitely on to something with this drug, I wish there weren’t so many hoops to jump through to try it. Where are you exactly? Unless this is hush hush. Glad you are doing so well.

[Terry615 in reply to SheffieldJane]

I’m in the US

[PMRpro Ambassador]

If you put actemra in the search box at the top right of the screen you will get a list of other posts with people talking about their experiences with it. They are almost exclusively in the USA as it is not approved in the UK and funding is a rather different matter.

In fact, this is a link to the list of posts:

healthunlocked.com/search/a...

[Terry615]

Thanks! And yes, I am in the US

[Klah]

My history almost mirrors your! I have had PMR FOR 4 years...could not get below 8m without flaring. First Actemra infusion last June (2017). Had 6 infusions...one each month...then switched to injection every two weeks so I coyld travel. Started the injections in early December. My November infusion seemed to be the biggest turning point! I had tapered from 8m in June to 4m. If I had a flare from overdoing it, I could recover in a day!

By the time of my last infusion I KNEW my adrenals had kicked in...didn’t have to ask the doctor! I had my energy back and that dreaded fatigue was totally gone. Was it the Actemra or the reduced prednisone? I could feel the brain fog start to dissipate. So, to those of you who have to ask if your adrenals are kicking in, my guess would be “No”.

Anyone taking Actemra has to worry about side effects, etc....just like any other medication. I also am a little uncomfortable “bragging” about how great I feel to folks who do not have access to this medication. This forum has been a life-saver. Lots of people have had PMR For a long time and tapered down successfully without many flares or side-effects....now I know how they feel! Even the DSNS method did not work for me. BUT, eventully there will be remission😊

[Terry615 in reply to Klah]

Actemra has worked great for me as well. I didn’t realize how much PMR had worn me down until, about 5 months into Actemra. One day I realized I had much more energy and generally felt lots better. Reading about all the side effects is unnerving, but if you read about the side effects of OTC meds like aspirin or advil, even they can sound pretty scary.

I hope the pharm companies will work to lower the prices on these meds so more people can benefit from them.

[Jim-CJ]

Hi Terry,

Great to hear about your success. My wife starts Actemra on Thursday. She will be on weekly injections. She has had GCA for three years, with prednisone up and downs. She is at 22.5 mg prednisone per day. Do you think she can drop 2.5mgs every three weeks to 10 mgs. Then, perhaps go to 1mg every other week after 10mgs. We asked two Rheumatologists about tapering with Actemra and get no guidance. Any help you or anyone can give us would help.

Thanks So Much,

Jim & CJ

[Terry615 in reply to Jim-CJ]

I followed the advice of my rheumatologist on that one. We still followed the slow taper guidelines because, for me, it took several months to get the desired effect with Actemra. I was able to speed up the taper after about five months on Actemra, but I wanted to avoid the “yo-yo” process. PMR tests you patience, for sure!

[Klah in reply to Jim-CJ]

My rheumy doesn’t like the up and down on the prednisone...and with GCA it is so important to watch the dose. I could not believe how easy it was to taper when on Actemra. I think it is totally possible to do that. I believe Actemra isn’t “curing” the GCA so to speak, but it is attacking the

IL6 that are causing the inflammation and thus allowing themprednisone reduction. This is my “non-medical description of the process! I would be very optimistic if I were you😊

[Jim-CJ in reply to Klah]

Thanks Klah for your words of support and an easier understanding of what will go on. Will keep up on letting folks know what is going on with CJ.

Jim & CJ

[PMRpro Ambassador in reply to Jim-CJ]

It really will depend on your wife - what I have seen from the various posts is that the reduction still takes time or some people and some people still get stuck at a low dose. And below 8mg it is not the GCA/Actemra that governs the speed - it is the return of adrenal function.

[Jim-CJ in reply to PMRpro]

As always, thanks PMRpro for your input. As we progress, there will be more questions.

Jim & CJ

[Jim-CJ]

Thanks for your reply. Will post our results as we use Actemra.

[Leeleep]

It did finders for my GCA but i don’t have too much pain improvement for PMR. It is a good drug to help lower prednisone dose.

[NEPatriots12]

Hi Terry615

I just started actemra 2 weeks ago and actually feel better already. Dr had me reduce to 8mg medrol from 12 today.

Hopefully I’ll be able to tolerate that drop.

Are you still having positive results with actemra?

[Terry615 in reply to NEPatriots12]

Yes I am. Not sure how long I’ll need to take it, but I’ve had excellent results. Totally off steroids and all their unwelcome side effects.