Question To those taking Actemra

[Linny3]

I am wondering how long you were on Actemra before decreasing the prednisone?

Thanks

[SheffieldJane]

I do my 4th injection of Tocilizumab (Ro-Actemra) this week. My Rheumatologist has had me tapering from 40 mgs since before I started the injections. Big drops of 5 mgs and then 2.5mgs. I am now on 12.5 mgs. This has been achieved in a matter of weeks. To be honest I don’t feel great - pretty fatigued. However, the sudden appearance of Pred side effects such as steroid induced diabetes has spurred me on. My Rheumatologist does not believe that I am especially at risk of losing my sight ( age, history, tests etc). My instructions are to reduce to 10 mgs and I talk to her via Zoom next week. There is no sense that reductions are getting harder, I feel the bump, but it’s the same each time.

This flies in the face of everything I thought I knew about tapering.

These are my particular instructions, so talk to your doctor.

For me though, it would be immediately and quite quickly ie weekly.

[Linny3 in reply to SheffieldJane]

Wow that is fast

The only thing I am feeling, after 2 shots, is ; 15mg is much more comfortable than it had been. I have been bouncing between 16mg and 15 mg for 2 weeks. This week I have been on 15 mg and it seems like it is taking care of the pain. My dr. didn't give me any direction as to decreasing the prednisone. I will need to find out what she thinks.

Thanks for the reply

[PMRpro Ambassador in reply to SheffieldJane]

The tapering with tocilizumab is a totally different matter, it supplants the pred - until it gets to the adrenal factor. For new patients on tocilizumab there won't be the adrenal factor to the same extent, they have probably only been on pred 6 months, 12 at most. Different for the recurrent GCA people who get it.

[SheffieldJane in reply to PMRpro]

Do you know if Tocilizumab offers me protection from the development of the disease? Does it have an impact on the disease and not just the inflammation. Can it protect the eyesight?

Sorry for the bombard. I haven’t really got a straight answer to these 3 questions.

[PMRpro Ambassador in reply to SheffieldJane]

It acts directly on the source of the inflammation - it blocks the effect of the cytokine IL-6. But that isn't the only cause of inflammation in GCA so that is why it doesn't work 100% for everyone,

ncbi.nlm.nih.gov/pmc/articl...

may be of interest - read it slowly, one line at a time! It isn't easy - and is from Dove Press which I have reservations about BUT it has Dasgupta's name on it.

If there is no inflammation, then there will be no swelling of the artery walls which is what restricts the blood flow to the optic nerve. However - there is evidence of progression in the odd patient but I imagine that is because IL-6 isn't the only thing involved and TCZ only works on IL-6. Does it have an impact on the disease itself? No idea - and to be honest, I suspect they don't really know either!

[SheffieldJane in reply to PMRpro]

Thank you! Very helpful.

[Spanky2019 in reply to PMRpro]

Thank you so much!

[cmgarner]

I started Actemra when I was on 60 mg prednisone (had already been on 60 for 6 weeks), and have been tapering every 4 weeks. Currently on 12.5. At this point the rheumatologist wants me to taper down 2.5 mg every 4 weeks. At this dose range I feel fatigue if I go down more than 10%, so I plan to take it more slowly than she suggested.

[enan-illuc]

Hi Linny3,

I was on Actemra/Tocilizumab about two weeks when I started to drop my Prednisone. I took it slow, .5 mg drop every week then after about a month I dropped 1 mg per week. After about six months I dropped about 5mg in one week. My Rheumy told me not to be in a rush to cut the Prednisone that below 7 to 10 mg the side effects would not be too bad, and she was right (in my case). I am at 1.5mg now and will remain at that "probably for life". I hope this helps. Remember everyone is different.

[Linny3 in reply to enan-illuc]

It does help thanks for responding

[jarn]

Was on TCZ 2months, then started tapering Pred. It has now been 5mos on TCZ and stopped Pred 3wks ago. However, now feeling some neck pain and waiting for Rheumy to advise further

[Linny3]

Thanks for the input

[Linny3]

What mg did you taper from?

[SheffieldJane]

Really helpful thread you started Linny3. The GP who phoned me today knew nothing about it.

[shazstep]

It was very easy to decrease preds every month. The problem now is my monthly blood tests show increase in crp and esr. Seeing rhumi next week as I now have gca on my right side. I feel there is no end. Those that have been able to come off preds seem to be in the minority. Maybe one day. Everyone has such a unique story.

[Chrisellie]

Probably the easiest way to read this is on my profile attached to the avatar /picture.

Let me know if helpful or if you need any other information.

[Rugger]

I started reducing pred from the time I started TCZ. You must speak to whoever prescribed the TCZ, as you need close monitoring when on this drug, which includes advice on pred reduction.

Best wishes.

[Jim-CJ]

Hi Linny3

My wife (GCA) waited one month (weekly injections) before tapering from 20 mgs. She used the dead slow method to get to 4 mgs, where she is now and holding. Worked perfectly with no side affects.

Best To You,

Jim & CJ

[SheffieldJane]

Thank you for taking the trouble to respond to my questions.

[technogran]

I was on Pred for a few weeks before starting on Actemra. I'm now trying to taper to 9mg Pred but slowly as the last time I got to this stage and had a flare up. I've been on Actemra for 18 months now although I know quite a few folk come off it after 12 months. I don't know if it helps but the doc seems to think so. Hope you keep well.

[Linny3 in reply to technogran]

Thanks for the reply

You have been on actemra for 18 months? You are now tapering to 9mg? What mg were you at when you started the actemra? I really thought it would go faster than that? I also expect the pain to be less, but apparently yours is not?

[PMRpro Ambassador in reply to technogran]

"the doc seems to think so"

Is that because your blood markers are normal? Because of the way it works, they aren't valid with Actemra, symptoms rule!