Hello Everyone, I have been following the posts of others and have commented on some, but I thought now I’d add an update. I have just received my first subsidised prescription for TCZ. Some may remember that I was on a bit of a mission to extend my 12 month allocation and I tried through the government subsidised channels, approaching both State and Federal Health Ministers for support. I failed there but was given great advice. I decided against the public hospital trial path and approached Roche directly. Through my rheumatologist, we achieved approval for subsidised access to 60 weeks of TCZ. With the confidence of knowing that I have that extended access, I have decided to continue my taper. I am now at 1.25mgs pred. I am feeling strong and confident, notwithstanding two bakers cysts and torn meniscus in both knees. They are irrelevant in the process. I’m planning to stay at 1.25mgs for an extended time (because I have all of these spliced 5mg tabs from previous trials 😂). I am so appreciative of support here, and I’ll just keep trying to get there. By the way, I’m interested to hear how PMRpro is going on her TCZ journey.
An update on TCZ: Hello Everyone, I have been... - PMRGCAuk
An update on TCZ
Thanks for this..
.. and not wishing to come over all techie 😏 - but if you can say what in particular you are updating it makes post much more useful and user friendly - related posts and the subject in the search facility...for example..
"An update on TCZ" would be fine and easy to do...
Many thanks..🌸
Noted and amended, thank you DL.
Thanks, much appreciated.,
Slowly!!!!! Other problems making life difficult: right ankle achilles and left ankle peroneal teninditis!!!!!!! Both impinging on hips ... But other than that, I think I feel some difference even at a lower dose of pred - which after all is the idea!
Have you been able to taper? No side effects from tcz?
Was on 19mg when I started and currently seem stable on 14mg after 3 months - he said not to try to taper for at least 2 months and to go slowly. Only side effect seems to be fatigue 24 hours after the shot.
One major improvement I think is that the atrial fibrillation is vastly improved - not gone entirely but when I do have an episode the tachycardia bit is in the upper 90s and low 100s rather than 120-ish and spikes to 115 or so whereas before they would often spike to the upper 130s. OTOH, the bradycardia bits can be down to 40 for a few minutes instead of stuck at 60! I have a pacemaker that was set originally to operate at below 60 but she adusted that the time before last to make the battery last longer!! The a/f was always worse if I was flaring. And my BP seems lower - which seems strange since TCZ usually raises it!
Well that does sound optimistic. I feel hopeful for you, can't offer advice because you know more. xx
You know more about TCZ practically speaking!
Only that it works for me. As I have 3 weekly jabs, the very low doses of pred that I'm on may have to continue indefinitely, but with extended tcz, I have the confidence to explore. I'm thinking of you now, on your tcz journey.
Why on earth is she concerned about an extension of TCZ which is known to work rather than starting mtx which doesn't necessarily?
I think it's all about power. As much as I like her, she has never respected my own research and nor my reference to this group when I have questioned things. Once I told her that it was my body, placing these drugs into it with unknown consequences (except the ones I referred to from support on here), she seemed to understand. I was nervous about tcz initially, but it worked. Why try another drug when this one works? I don't see her until September, but she has backed me.
That is exactly what Christian Dejaco, my rheumy, said because I offered to try leflunomide - even though it scares me witless!
That was the other drug she offered. Don't go there until you see if tcz is working. We know it causes, in some of us, neutropenia, but there seems to be no long term effects in the RA patients for whom it works.
My friend in Scotland developed quite severe neuropathy, awful shakes. No desire to experience that! It worked very well for her until she had to stop and then she was back to 20mg pred!
I guess we are in uncharted waters, well I am. I am prepared to see what happens. Will report back any events worth recanting. All the best on your tcz path, hoping for the very best for you.
I too have neutropenia, hence three weekly jabs. Still works, so far 🤞. No liver problems yet, but I drink wine so if anything changes, I might have to give up my final pleasure.
Well done for keeping on and finally you have a very good result. I did wonder how you were getting on.
Thank you. It's a huge relief for me but hopefully I'll have smoother sailing in the near future at least.
That's good news. Fingers crossed for your taper.
Thanks Sharitone. I will be taking it slowly, will probably remain at 1mg indefinitely. We'll see.
Well my Rheumatologist has wanted me off pred for ages but after a flare at 0.5mgs, I went back to 5 with a rapid taper to 2mgs where I have remained for a few months. It's only now with the guarantee of continued access to TCZ that I've had the confidence to continue to taper. I am taking it VERY slowly now, no need to rush. I think she's more concerned about the extension of TCZ where she wanted me to start metho, but I declined.
Well done for achieving the extension of Tocilizumab and good luck!
Thanks Jane, it's been quite a journey. I hope you are managing everything. Xx
It's good to read of these journeys and their outcomes and progress. Gives hope to newbies and strugglers.
I too have had PMR and GCA in some combo for a long time (11 years) and am concerned about it remaining long term. TCZ is working great for me however I have been able to taper that also. I was a a jab at 3 week intervals when I stopped it completely last Sept. unfortunately markers and pain both increased in January so I went directly back on TVZ with a short burst of Pred. I Ow off Pred and back to every other week jabs, hoping to go to every third week. Will experiment this time with further tapering to see how far apart can get the TCZ whilst keeping the beast at bay. Currently feel great, walking 3-5 miles a day with daily strength exercises too. I fear loosing the Actemra support when I go on Medicare ext year. Will see...
That is great news, long may it continue. It's new territory to extend the tcz jabs. I'll be on that adventure eventually. You seem to be on a good path. I would love to hear how you progress.
I get Actemra And I am on Medicare. The only difference is that I have to do monthly infusions rather than injections.
Do you have GCA and how is it working for you? I have heard the monthly higher dose can knock you out for a day or 2.
Yes, it is absolutely working for PMR. Which considering I’d been struggling with it for 7 years before getting GCA, I’m almost grateful as it led me to TCZ and eventually off Pred. I just can’t understand Medicare only reimbursing for infusions as that is not what is approved for GCA.
Thanks for all your information. And I am grateful for the government helping. 
I have plenty of complaints with the private healthcare system!
I agree with all you said. Have a brother and a dear friend who use the VA in Nashville and they like it a lot.
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