To taper Actemra or not?

[LemonZest11]

Just wondering whether to take the Rheumy’s orders or follow my own instincts. I am still on 3-weekly injections of tocilizumab and have managed to taper the pred to 0.25mg. My doctor scoffed at that, she doesn’t believe that such a small amount could make a difference, and perhaps she’s right, but now she wants me to taper the TCZ. Last time I tried that I was on .5mg pred and very quickly flared when I stretched the TCZ to 3.5 weekly. She’s not all that thrilled that I managed to secure funding to continue TCZ but as I have explained, I’m just not prepared to try another drug when this works. Any advice please? Stick with 3 weekly jabs or go for 3.5 weeks (she said 4 weekly jabs!!😱)?

[DorsetLady PMRGCAuk volunteer]

No experience of Actemra, but would say go with your gut instincts…..

…your Rheumy may be right or wrong, but if you are pushed into doing doing something different it may cause stress, and we all know what that can do.

If possible stick to the routine you know works for you.

[LemonZest11 in reply to DorsetLady]

Thanks for the reassurance DL. Actually I feel a bit like a fraud, given that I have come so far, but a word of reassurance on here is always so comforting.

[PMRpro Ambassador]

She's really struggling with loss of control isn't she!!!! How much does she have to do with the provision of the TCZ? Where there aren't these constraints it is used for a lot longer in some patients. The claims in the studies were that when someone flared having discontinued TCZ, the flare was well controlled by reintroducing weekly jabs.

Me being me, I'd be having a "come to Jesus" talk with her. And I would increase the gap a day at a time - once a month would seem a very sensible gap IF you can manage. But equally, you don't want to be changing two things at once, either pred or TCZ must stay stable.

[LemonZest11 in reply to PMRpro]

God I needed to hear from you, so much sense and support. I was thinking to try to end the pred before I start with the TCZ, but not sure. I have a few more weeks of pred in my plan but I might be able to hasten that, given that I’m feeling well. Your plan for the TCZ taper makes sense, I would not have thought of that. That’s why you’re here, you and DL. OK, plan in place. Thank you, and yes, she is a bit tricky but I still respect her because she had to approach Roche on my behalf, and she did that for me, against her plan for metho or the other one starting with L.

[PMRpro Ambassador in reply to LemonZest11]

I wonder how once a month TCZ and once a week 1mg pred would work? Just a thought ,,,

[LemonZest11 in reply to PMRpro]

Oh no!! It sounds like another possibility but it’s hard to get my head around increasing pred. Last time I flared I was on .5mgs, went to 3.5 week tcz. It’s such a juggle … what to do???

[PMRpro Ambassador in reply to LemonZest11]

That was 1mg PER WEEK!!!! I shouldn't have mentioned it - start by soothing her ruffled feathers!

[LemonZest11 in reply to PMRpro]

Haha, yes! OK, so you mean taking 1mg once a week, when I get off it?

[PMRpro Ambassador in reply to LemonZest11]

I just wondered if that would work and is less than 1/4mg every day. It is the sort of talisman dose I would take and I have come across people when 1/2mg every 3rd/4th day was loads and 1mg once a week mopped up what tiny bit of a problem there was.

[LemonZest11 in reply to PMRpro]

As we would say in Australia, you’re an “ideas woman” !! I’m having no problem cutting the tablets but the idea of taking a less frequent dose is attractive. I think I will give that a try. I’ll finish my regime of 1/4mg daily for the next couple of weeks, and then put your idea into practice. Always learning. The jabs, however, I will continue 3 weekly for now. Thanks so much.

[SheffieldJane]

Are you constrained by cost in Australia like we are in the UK? I just cannot understand her thinking. I think your instincts are right. You don’t want to upset the apple cart at this stage. You have done soo well. Tocilizumab is definitely working for you. She has no business scoffing at micro-dosing, it works. I wish I had been able to continue with Toc. I am stuck at 5 mgs of Pred still.

[PMRpro Ambassador in reply to SheffieldJane]

That is all Christian is aiming for for me - but back at 10mg currently but nothing directly to do with the PMR

[LemonZest11 in reply to PMRpro]

You will make 5mgs …

[PMRpro Ambassador in reply to LemonZest11]

Only if the a/fib agrees ... Got to be able to live and that was getting a struggle with 10 hours plus f a/fib a day!

[LemonZest11 in reply to SheffieldJane]

Thank you Jane, for responding. In Australia we are allowed a 12 month allocation for GCA/LVV. I had to stretch out my doses because of neutropenia, and eventually settled at 3 weekly jabs which continued to work for me, allowing the neutropenia to recover each time. Because of that, my allocation lasted longer than 12 months and I was going well so when my rheumatologist suggested methotrexate, I went on a mission to try to get an extension. I think I posted about all of that, but long story short, Roche are subsidising me, so my first 2 scrips of 4 injections I had to pay for at AU$850, and now Roche are covering the cost for the next 3 scripts of 4. I feel fortunate but it has been quite the journey, so reluctant to hasten things now at the risk of a blowout. How are you going Jane?

[SheffieldJane in reply to LemonZest11]

thanks for asking. I am struggling a lot with bowel and bladder issues and constant lower abdominal pain, symptoms of IBS and frequent UTIs. Collateral damage I think. Finding it hard to get a doctor engaged. They may try long term, low dose antibiotics. It may involve Diverticulitis although colonoscopy showed age related diverticulosis only. It is dominating my days. Down to 5 mgs coated Pred in desperation .

[LemonZest11 in reply to SheffieldJane]

Oh that's a lot to be dealing with, especially with everything else. What's wrong with these doctors, I think at times, we know more than they do, or at least the experts on this forum do! Well at least you are down to 5mgs pred, a very good effort and a safe dose I believe. Hopefully they'll be able to come up with a better plan for the other things. I'm thinking of you down here 🌹

[SheffieldJane in reply to LemonZest11]

Much appreciated. Morale is pretty dismal in our doctor’s surgery and they really are passing it on. My family did the right thing relocating to Australia. Xx

[LemonZest11 in reply to SheffieldJane]

Is it too late for you to come? I bet they would love that! ❤️

[SheffieldJane in reply to LemonZest11]

All being well we will come to Australia later in the year. When my husband retires we are coming for 3 months or so. 🦘

[DeepThought2]

dear LemonZest, I increased my Actemra injections slowly from 7 days, then 10 days to finally 2 weeks (I don’t take pred anymore since summer 2021). A while after starting the 2 weeks scheme I started to get some symptoms (fatigue, feeling a bit weak, increased resting heart rate) that I suffered from at the onset of my disease (however they where much milder this time) - I have to say that they started after receiving a Covid jab plus suffering from a stomach bug and from skin abrasions from a bicycle accident all more or less at the same time. Went away again after going back to weekly injections (plus a four day pred pulse). This fits to the study PRMpro refers to above. So the good thing seems that you can try to slowly increase the time between injections and if you get symptoms you can reduce the time span again. I now decided with my rheumatologist to stay with weekly injections for some time and then try out again a slow increase in late spring/summer again (if all is good by then). I am totally fine with Actemra as I have no side effects and after my last experience with increasing the time between injections I will be more careful in future - so I can fully understand that you are hesitant to change anything. If you have longer term supply of Actemra you could stay where you are for the moment and when ever you think you are ready increase the time slowly as suggested by PRMpro.

[LemonZest11 in reply to DeepThought2]

Thank you. I am already at 3 weekly jabs, so stretching further is more risky. I always listen to PMRpro and Dorset Lady and also Jane. I appreciate your advice as well.