Pred and Actemra

[Mahler2]

Thank you to those of you who answered my questions last week about restarting Prednisone because all my symptoms had returned whilst on Actemra injections alone. I had the 3- monthly bloods taken at the medical centre last Tuesday so that my rheumatologist would see what was going on after 10 weeks of only Actemra, and took 5 mgs of Prednisone as soon as I got home! (Thanks Sheffield Jane!) By the end of that day I was feeling about 60% better and over the last 6 days have improved up to about what I was before stopping; approximately 90% which is absolutely wonderful for me. I’m not greedy! I have one more Actemra to take so expect I’ll be given an appointment to see the rheumatologist soon when I hope she will let me stay on pred alone. My bottom line is that I can do up my bra and put my socks on from a standing position without being in agony and falling over respectively! Thanks again to all you wise and wonderful people.

[PMRpro Ambassador]

I'm just so surprised that doctors are using Actemra without having read and understood the clinical trial results. I discussed it with Prof Mackie when it forst staarted appearing on the forum that people were relapsing as they reduced the pred and she was amazed too - it is so clearly stated in the documentation.

[Mahler2 in reply to PMRpro]

As I think you said some time ago to someone else, doctors seem to want to experiment with new drugs or treatment instead of trusting the tried and tested ones. In all fairness I presented on my first appointment with my rheumy with all the usual GCA symptoms and was taking 40 mgs of pred so she was justified in giving me TCZ there and then. And the 2nd time was after a high inflammation marker of 80. But it just doesn’t do it for me, whereas a low dose of pred does. There was an interesting programme on the radio this morning about how certain drugs don’t work for sometimes up to 30% of patients. For example codiene. In fact they can be very harmful. I was walking the dog and cat at the time so didn’t get all the detail.

[PMRpro Ambassador in reply to Mahler2]

Were you on the Actemra when the inflammation marker was high? What was it - sed rate?

[Mahler2 in reply to PMRpro]

No, just pred; 2mgs

[Mahler2 in reply to PMRpro]

Sorry, didn’t answer your question fully. Yes, it’s Velocitat Sedimentacio Globular and the latest one which was early December was back down to 10 after having restarted Actemra on the 12th of November.

[PMRpro Ambassador in reply to Mahler2]

Sorry - forgot that!

Well it would be - Actemra stops the production of CRP which is one of the proteins that contributes to developing the sed rate. With Actemra you can't rely on the results of sed rate and CRP. You monitor by symptoms and other markers.

[Mahler2 in reply to PMRpro]

Which is exactly what my UK GP friend advised me 2 years ago when I couldn’t see a doctor here. Thanks again for sharing your knowledge

[SheffieldJane]

It is lovely to hear you being so upbeat! I need to address my own situation now, with me it’s letting go of the hope Actemra offered and trying not to increase Pred ( which always worked like a charm for me).

[Mahler2 in reply to SheffieldJane]

Thanks. That’s pred for you; lifts the spirits as well as taking away the pain! “Letting go of the hope” sounds so sad but sometimes we have to go through the hope and disappointment of something new to return to the ‘old friend’ who we know works for us. Good luck 👍

[Sophiestree in reply to SheffieldJane]

With all the extensions of TCZ during covid, how long did you take it in the end?

[SheffieldJane in reply to Sophiestree]

I have honestly lost count, my supplier couldn’t tell me how many doses I had left either. I am being quite inconsistent, in that I had an injection after coming off a recent course of antibiotics about 10 days ago and got yet another painful UTI a couple of days later. Mind you Mannose-D really helped yesterday. This was after deciding not to take it anymore. I am stuck.