Alternative to prednisone

[Strelitzia]

I am about to be tapered off prednisone and put on the biologic medication Actemra (Tocilizumab) as my rheumatologist says the long term effects of prednisone are very hard on the body. The Actemra will be self injected weekly. I am interested to hear from anyone with experience with this treatment.

[SnazzyD]

What dose of Pred are you on at the moment? Just wondering if you might be at risk of adrenal problems if you taper too fast. I know it’s not the answer you’re looking for but sometimes this aspect is forgotten in the rush to get off Pred.

[PMRpro Ambassador]

You don't usually taper of pred and THEN go on to TCZ - you take the TCZ in order to be able to taper off the pred.

If you were to change the title of your post to include "Actemra/tocilizumab instead of pred" you would find even more past posts about it in the Related Posts (in the side bar on a computer, not sure where on a phone)

[SheffieldJane]

I was able to taper down from 40 mgs Pred to 10 mgs in a few short weeks, as advised by my clued up Rheumatologist ( with Tocilizumab) without any flares.. I stalled then and am currently stuck at 7 mgs of Pred.

[Chrisellie]

HiMy own journey and prednisolone reduction with weekly injections is in my profile.

I have been off injections for 2 years now. Prednisolone went before that.

Hope it works well for you also.

[Carver63]

hello Strelitzia I have been on Actemra injections for about 15 months as part of my taper down program with Prednisone. Actemra has been very important in my taper program and if you can get it then i strongly recommend trying it. I have been able to go from 60mg to currently 2mg since starting Actemra. I have had trouble tapering off Pred before Actemra, several relapses. Currently my TA seems to be under control and I am feeling not to bad. Side effects of TA , Pred and Actemra for me are more noticible now that my Pred dosage is so low. I find that the weekly dosage only effective for about 5 days and some minor side effects start up on the last days of the week. i have had most of the classic side effects including light headed, muscle ache, tiredness from the injection being the most noticeable. Good luck and get healthy

[Strelitzia in reply to Carver63]

Thank you for the information.

[Sharitone]

I have been self-injecting Actemra/TCZ for 13 weeks now. There have been no dramatic developments, either positive or negative; however, I am now down to 11mg for the first time, with only fairly minor stiffness, and as I have significant side effects from pred, that is definitely a bonus. My latest CRP result was very low 🙂Rheumy has now told me to reduce pred by 1mg every two weeks now, which is rather scary.

[PMRpro Ambassador in reply to Sharitone]

The CRP can't be used to monitor the success of Actemra in controlling the PMR or GCA - it stops the production of the protein so it automatically is low. The underlying cause of the symptoms may still be active - as there is more than one mechanism.

[Sharitone in reply to PMRpro]

Oh. I thought it was the TCZ somehow enabling smaller amounts of pred to do a better job. I'll get me coat.

[PMRpro Ambassador in reply to Sharitone]

It does in a sense - but in a different way. It actually stops the production of the inflammatory substance but there are a few different ways the inflammation can be created, I said it in case you have a rheumy who is unaware that the CRP isn;t as useful when you are on TCZ - because some appear not to know!

[Sharitone in reply to PMRpro]

Yes, I think that is very possible!

[Grammy80 in reply to PMRpro]

I'm so glad to see you put this out there......my rheumy told me immediately that the CRP and SedRate would no longer be a reliable measure of inflammation once I started Actemra, TCZ. TCZ had enabled me to get down to 10mg after two years plus. Since I have lost sight in the left eye, I'll take whatever help I can get. Maybe, maybe, the TCZ makes me feel more fatigued but I doubt I'd feel like I did before GCA entered my life if I stopped it. Risk vs benefit...as they say. I had a laundry list of comorbidities before GCA was added. 💕💕

[PMRpro Ambassador in reply to Grammy80]

Good for your guy - he read the "How to use" manual. What amazes me is how many doctors have obviously NOT read it and continue to rely on CRP/ESR and even show that to the patient as "proof" things are OK.

[nallufl24]

Actemra has enabled me to get to 5 mg pred from 35 mg in 2 1/2 months. I feel much better but the last few days I’ve had no get up and go. My back also hurts but I had a few back pains before diagnosis so don’t know if with the lower dose the old pain is coming back or if it’s new. All in all I’m much happier to be on Actemra. Just hopes it continues to work with no bad side effects

[PMRpro Ambassador in reply to nallufl24]

Had you been on pred long before starting the Actemra? The no get up and go and the back pain can both be signs of poor adrenal function so keep an eye on it and I would be inclined t report it to the doctor just in case.

[nallufl24 in reply to PMRpro]

I started with 60 mg pred in July 2021. I started Actemra this past December.

[PMRpro Ambassador in reply to nallufl24]

That's is plenty of time for adrenal suppression to have developed and it will take a few months to return, You are just starting that process, at the higher doses of pred they were still in hibernation. Adrenla suppression doesn't just disappear overnight, it is a very complex set-up in the HPA axis (hypothalamus, pituitary, adrenal organs/glands/hormones) so even with Actemra it will take time. The Actemra ensures you can remain at a low dose of pred without the GCA flaring up again but half of patients require some pred even when on Actemra because there are two other mechanisms that may be involved that Actemra can't control and are not able to get to zero, I hope your doctor allows you to slow down with the pred reduction from here - for both reasons.

[nallufl24 in reply to PMRpro]

Thanks. My doctor does not want me to slow down. However, I have taken it in my own hands before and I’ll probably do it at my own pace again

[PMRpro Ambassador in reply to nallufl24]

Your doctor may not want you to slow down - but ask him if he REALLY is prepared to expose you to the risk of an adrenal crisis rather than take a couple of months longer to reduce the pred dose? Actemra ALLOWS you to get to a lower dose of pred in the context of GCA and that in turn allows the adrenal function to return. But Actemra doesn't speed it up or replace the corticosteroid our body requires to function.

In the clinical trials the Actemra was started at a similar time to the pred and the reduction was commenced immediately. You were 6 months later and adrenal suppression would have well in place by the,.

[nallufl24]

I agree that’s it’s hard to predict anything. I try not to think too much about all the things that could happen but it’s difficult for me.I also don’t understand a lot of doctor’s attitudes about decreasing pred. In the beginning I did everything I was told to do because I didn’t know any better. When I got to 10 mg I was a mess with headaches, depression and fatigue. I had to go up to 40 again. Doctor swore it wasn’t a flare of GCA but I felt it was because of the constant headaches and slowly rising inflammation levels. This time I found this website and after reading so many stories I tapered at my own pace and not his.

Now that I’m on Actemra, he again has me tapering at a fast pace to get off pred completely. But again I think I’m going to go at my own pace.

[voyam]

My journey started in 2016 - I was on high does of prednisone - 60mg and was able to taper down very quickly once I started Actemra to 10mg however to go from 10mg to 0mg took quite sometime at the end I was reducing maybe .5mg a week - I found going very gradually was the best. It worked and my adrenals kicked back in - Actemra worked very well for me twice now I thought I kicked PMR to the curb and I stopped my monthly infusions of Actamra, however the PMR came back. Currently I'm back on Actemra again and hoping maybe the 3rd time will be lucky. Its a tough illness. Best of luck to you on your journey