I feel I'm on the home straight with my GCA/PMR, down to 2mg prednisone daily and weekly TCZ, (which I started Nov 21 and buy on private script as methotrexate was a nightmare for me)Rheumy says to get off pred completely before reducing TCZ. However, my liver enzymes now worryingly high, due to TCZ my Rheumy and GP agree. I would rather stay on low dose prednisone and reduce the TCZ, both for liver and financial reasons.
I see the Rheumy in 3 mths. Can I ask the experts what they think about my staying on 2mg Pred and gradually reducing the weekly TCZ to every 10 days, then 2 weekly etc? Does anyone have advice on how to reduce TCZ?
Many thanks as always for this wonderful service.🙏🙏😊
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Happyexplorer
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Have a look at Lemonzest11's posts - she is also in Australia.
I had the UK's 'ration' of TCZ, which had to stop a year ago. After 6 months, the inflammation resurfaced and I went back on 5mg pred for 5 months and now tapering to 3.5mg.
I can't help with a taper for TCZ, as I stopped suddenly. (Rheumatologist did try me on MTX instead, but it didn't seem to do anything for me.)
"I would rather stay on low dose prednisone and reduce the TCZ, both for liver and financial reasons"
It does all depend on how much the TCZ is doing for you if the underlying autoimmune cause of the inflammation is still active. TCZ doesn't stop it - it stops the IL-6 it produces having an effect. You are still waiting for the autoimmune bit to burn out and stop creating IL-6.
As Rugger says LemonZest11 is the person to consult about tapering TCZ slowly - she has got to 4 weekly now I think. The original trials were done with weekly and biweekly injections and although weekly was better, the difference was pretty small. So if it were me, I would try 2 weekly and see if that will bring the liver enzymes down. It also halves the cost at a stroke!!!
Thanks PMRPro- really sensible advice and I probably should have researched more before bothering you. I will stay on the low dose Pred and start the biweekly TCZ , as ofcourse, one never really knows the effect TCZ is having- I've certainly not had any adverse reactions. I've read lemonzest's posts too now. It's all a bit of trial and error but having a second opinion makes decisions much easier, so thanks again. 🙏🙏🤗
Why? It is probably far clearer to me having also gone through Lemonzest's journey alongside her AND knowing how the stuff works, DeepThought2 is also au fait with tapering TCZ though I think he is entirely off pred which is a slightly different situation.
You're amazing, thanks again! Just caught up with Deepthought 2 posts as well- and am confident to start reducing TCZ- will post feedback as I progress
Hi there Happyexplorer, sorry that I am coming to this a bit late, only just seen it. Yes, PMRpro has been beside me on my journey and her support and advice have been invaluable. I too had a couple of dodgy liver tests while on TCZ, but unsure if they were due to TCZ since they were a bit random. I have been taking Thompson’s Milk Thistle 42000mgs for some time now and no more liver issues so it’s worth a try. Because I developed quite severe neutropenia on weekly TCZ, my rheumatologist moved me to fortnightly and then three weekly. The TCZ continued to work and enabled me to taper off pred altogether. It has now been 24 weeks but my taper was extremely slow. Once I got to your level I tapered 6 weekly 0.25mg at a time. If you are wanting to taper the TCZ then I would definitely go straight to fortnightly and if your liver is still reacting, try 3 weekly. I have been on 3 weekly for 2 years and now, with PMRpro’s advice, I tried 3.5 weekly. Stayed there for 4 rounds and my next will be at 4 weeks. We just don’t know what will happen. PMRpro knows my fear of the dripping tap syndrome but if we don’t try then we’ll never know. By the way, I am sponsored by Roche so I only pay for 2 packs of 4 in every 5 repeats. Very helpful.
Thanks Lemonzest- appreciate your response and the milk thistle comment is interesting, I will give that a go for sure! Well done getting Roche subsidy- as you know, it's $850 a month on weekly dose, but still a lot cheaper than UK. I'm really looking forward to reducing and finding out if it did play a key role. I feel so good now, and have my face back to normal and energy levels so much improved. I know I'm pretty lucky and hopefully can clear it all up over the next year!🤞🤞😊
If you want to approach Roche to see if they will sponsor you, you need to ask your Rheumatologist to make the approach to the Medicines Access Coordinator. You need a good story to be heard. I had approached my State and Federal Ministers, the Health Minister and anyone I could get help from, to no avail. Eventually I approached Roche directly, on the advice of Greg Hunt, the previous Federal Health Minister. They wouldn’t talk directly to me but suggested that my Rheumatologist contact them. It was quite a journey but I have ongoing support now and feel reassured that I can access TCZ in the long term. My advice? Taper the TCZ and continue to taper the pred. I’m a Melbourne girl living in Perth, where are you?
Hi, I have been on TZ for 4 years and started weekly eventually moving to 5 weekly but then had a flare so now at 3 weekly, I think the general consensus is that 2mg is ok to stay on. Best wishes
Thanks Christine....appreciate the response very much. Will definitely start reducing the TCZ and just hope it doesn't take too long. Such a variable, whimsical condition isn't it....so good to hear others' experience!😊
Following as I am now off pred. and on weekly Actemra injections. This is year 3 and I am hoping I can soon begin to taper TCZ and be completely done by this time next year. We'll see...
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Tapering with ACTEMRA (TCZ)
