Hi, I have searched past posts and can't find it anywhere, but am pretty sure someone posted that TCZ had been extended to March 2022.
I am seeing my consultant (for the first time EVER) tomorrow, and feel I need to back up this statement. Can anyone help. I am wondering if it was a response to another post as I have trawled and found nothing,
Thanks in advance
This document mentions the extension - specifically on page 4.
england.nhs.uk/coronavirus/...
Good luck tomorrow!
Ah you're a star, thank youYes, I am prepared, she is expecting me to be on 5/6mg!
Ha, sorry, failed that one!
I'll wear it with pride! 🌟
My appointment is in February, to discuss what to do post-TCZ!
Yes, that's an interesting question isn't it.I'm not expecting anything tomorrow at all, but just need to get what I want, ie hopefully the extension for TCZ and to get them to write to the GP for Shingrix.
Other than that, I am happy being left to my own devices.
Let us know how you get on.
Well, I have just got back and that was nothing like I was expecting.
Fully prepared to argue why I hadn’t dropped lower than my current dose of 9 - 8.5mg etc.
I saw a registrar who was very amenable. Said I was doing all the right things, was happy that I had got to where I had, was hoping that maybe I could get to 5 by the summer and was au fait with PMRCGA charity even remarking I was likely fully informed through that and said the slow taper plan was clearly working well for me. Even to the point of saying that sometimes if people try to drop too quickly they often end up back to square one on very high doses so slow was definitely the better option.
The interesting part was the TCZ when I asked re the extension, and he said that it had been extended to a full year, so my 12 months which finishes at the end of Jan will get extended by a further 12 months and that he was fully expecting them to extend that even further. He said to ring if I don’t get any further deliveries after January and they will chase it up straight away, but did say to take it weekly and not try to spread it out as the efficacy was clearly working for me. Interesting he did ask if I got nose bleeds, which I do with a vengeance, so maybe that is common with TCZ. But I have always been prone to them anyway, so maybe that is a double whammy with the TCZ on top.
We talked about the extreme fatigue and it seems his Phd was in fatigue with Lupus patients! He talked about how the inflammation markers in bloods would not show up due to the drugs and that therefore careful attention was needed with other markers, and suggested I hold off on Shingrix as he said he would not be surprised if a recommendation is made for TCZ patients on that in the next year.
He talked about pilates being an excellent form of exercise and gently building up exercise slowly after I had mentioned the cold I had (which lasted for 3 weeks) had thrown me a bit and so I had remained an extra week on my current dose.
Left feeling OK about it all, he was shocked though that I hadn’t seen anyone face to face from diagnosis, but obviously didn’t want to remark any further re the consultant! All in all pretty positive I think.
Good lord - who is this paragon!!!! Want to keep tabs on him 
If you see him again send him our regards and tell him to keep going on the same track!!!
I know, hilarious, you couldn't write it. I went in fully prepared for a battle and didn't have to have one. When I told him that I had received the NHS Covid letter re sending a pcr just in case and being offered the medication within 24hrs, he was very impressed, and pleased. He said a lot of his patients had not received that and said it was down to the GPs ... I think mine (although not brilliant) are GP trainers so maybe they have to have their finger on the pulse a bit more.I can imagine I will see him next time, mind you it has taken 14 months to see anyone so maybe that isn't so bad. I hope he gets a consultancy, he would be a good one to be under.
Wow! What a relief that you didn't have to fight your corner - even much better than that! I hope you get to see him at every appointment in the future.
Yes, me too, unlikely, but I am relieved now. I can relax with what I am doing without the expectation of what they think I should be at dosage wise. And even if I don't get to 5mg by the summer, I won't be too concerned, although of course that would be great, but I am taking the long slow road.2 years of TCZ is an interesting one. I will know soon enough as my year is up at the end of Jan.
I just looked up the registrar I saw yesterday and I reckon he was a locum. He is part of VersusArthritis but there is no link to the hospital I saw him at which is part of Barts, it's all UCL. Thought it was too good to be true!
That's a shame, but you could hope his locum tenure is a long one! Otherwise just be thankful for yesterday. Happy New Year too!
Wow this is good news re an extension of Tox. I’m due to complete my year in Feb. Down to 3mg pred but having to go very slowly now as pretty tired etc. Thanks 😀
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