actemra

[GivenUp24]

rheumatologist wants me to put me on Actemra since I’m not tolerating prednisone that well, what has everyone’s experience been?

[PMRpro Ambassador]

I've been on Actemra for over 2 years and have had no problems at all. It has allowed me to taper from 19 to7mg pred but no lower.

[GivenUp24 in reply to PMRpro]

That’s awesome… but sad you’re not off the pred.

[PMRpro Ambassador in reply to GivenUp24]

I don't mind - after over 15 years it is unlikely anyway.

[SheffieldJane]

It does what it says on the tin. Got down to 10 mg from 40 mgs in record time. I have ended up with Diverticula disease and it is not recommended if you have gut problems., though.

[Noni71]

I have taken Actemra alongside Prednisolone and it has enabled me to reduce to 6mg. No side effects. My year is up in 3 weeks so I’ve just started on Leflunomide.

[PMR2011]

I was on Actemra 4 years. It allowed me to taper off Pred completely. Have had no ill effects other than mild headache and fatigue after the injection. I switched to taking it at bedtime and that took care of that as I slept thru it. Tapered Actemra to monthly this year and last dose was mid-April. So far so good, am hopeful I’m seeing the backside of PMR and GCA! Interestingly acupuncture has helped me tremendously.

[Sharitone]

I have had it for 2 1/2 years. It has enabled me to get from 15mg pred to 3mg, which is obviously a large bonus.

Nothing too terrible has happened, but I have had to stop once in a while with neutropaenia, and to recover from bacterial pneumonia and Covid x2. The pneumonia I probably wouldn't have had without Actemra. The Covid has been treated with antivirals, but the current bout has so far lasted16 days. The message has to be that when on Actemra you need to be particularly careful about infection. On balance , though, I think I would rather have those infections than all those extra steroids.

[GCAinCarolina]

Have been on Actemra for about 18 months, off prednisone completely for a year Thing not totally rosey, but far better than the steroid. I'd give it a try !

[WaltzG]

Did the job for me !! And no nasty side effects other than bruising round injection site.

[LemonZest11]

I've had success with Actemra. No nasty side-effects and got off pred. I recently had a relapse of LVV so back on pred and in a rapid taper with the backup of Actemra. Go for it!

[GivenUp24]

thank you!

[Oztrax]

I like the idea of Actrema as us TYPE 2 diabetics get hard by Prednisone raising Blood Sugar levels to very high , but only for 8 hours or so. Not sure my doctors will let me stay on Prednisone for too long