TCZ/Pred Update

[LemonZest11]

Hello Everyone, apart from the odd comment I have added to others’ posts, it’s been 6 months since I reported in. I have been off pred now for 42 weeks and am on my 4th round of 4 weekly TCZ. I went through a bout of headaches but they seem to have settled and I’m feeling pretty good. I had my six monthly appt with my rheumatologist who told me she will be retiring next June 😭. She has been so supportive and has just extended my access to TCZ (with the help of Roche) for the foreseeable future, albeit, she wants me to go off it. I’m too scared. Since I have another 5 scripts of 4 jabs, and I take them 4 weekly, I’m thinking of continuing for the foreseeable future. Any thoughts on this please? While I’m here, I just want to thank you all, especially PMRpro, DorsetLady and Jane, for such tremendous support over a long period of time. You are superwomen and I don’t know how we’d all cope without your knowledge and kindness 🙏. Have a very happy Christmas everyone, and for those among us who are doing it tough, stay here. It will get better and the support from this group will get you through. Much love 😘

[Rugger]

You were diagnosed 5 years ago, so I imagine you have to make the best prediction you can (or can't!) as to when your GCA would go (or has already gone?) into remission. You will only know this when you stop all treatment and do not relapse. If I had 80 weeks' worth of TCZ and had no problems using it, I'm sure I would continue and then wait and see what happened when I had to stop. The alternative is to stop sooner, but keep the TCZ scripts on stand-by, as long as they are in date.

I had 2 years of TCZ in 2020 & 2021 (the one year NHS ration was extended during the pandemic). It kept on top of the inflammation, which only resurfaced 6 months after I stopped the TCZ. I had to go back on pred and am now tapering to 1mg...... I am 8 years on from diagnosis.

All the best to you for Christmas and 2024.

[LemonZest11 in reply to Rugger]

Sounds like you are doing well. Down to 1mg is a dream I was prepared to grab, but it didn't go that way for me, I was prepared to take that 1mg for life, hopefully you won't need to. Thanks for shared tcz support in the past. Enjoy Christmas, it can be a magical time. Xx

[PMRpro Ambassador]

I think you are doing great - and I would do the same, I imagine there is a good chance the GCA will be in remission by then!

[LemonZest11 in reply to PMRpro]

Thanks, it's good to have wisdom and common sense on my side. Hope you manage a bit of fun on Monday, Xx

[DorsetLady PMRGCAuk volunteer]

Sounds as if you are doing very well at the moment.. and agree your plan to continue 4 weekly injections for time being.. or as long as you can. Of course a new Rheumy may have different ideas, but that's in the future.

I can understand your apprehension in finishing medication, but as PMRpro says your GCA/LVV may well be in remission by that time... fingers crossed it is.

As we always say no point worrying about what may or may not happen in the future - nothing you can do about today.

As for support, why we are here, and happy to be.. all the best for lovely Christmas and [hopefully a GCA free] 2024

[LemonZest11 in reply to DorsetLady]

Thanks DL, reassurance is welcome. New Rheumy is a graduate so I might seem a bit scary to her. There will be a handover, I reckon she'll be sh*!ing herself 😄. I hope you enjoy some special time with your loved ones. Xx

[DorsetLady PMRGCAuk volunteer in reply to LemonZest11]

I will thank you -plus eldest NZ grandson who is in UK for work -haven’t celebrated Christmas with him since 2017. ,, and his first winter one since 2006..,no shorts or barbies for him this year!

[LemonZest11 in reply to DorsetLady]

Sensational!! ❄️ 💙

[PMRpro Ambassador in reply to DorsetLady]

I've BBQ'd on New Years Day - in Durham! The kids loved it!

[SheffieldJane]

It’s lovely to have an update from you. You seem to be doing really well. I wonder if you are in remission ( only one way to find out, I guess). You could always go back on Tocilizumab if you find that symptoms are creeping back - apart from the symptoms we feel as we move towards fitness which is a different thing. I mean the aches and stiffness when we overdo things and the habitual behaviours that come from protecting ourselves. I am in Australia currently and through the love for my children and grandchildren I have been doing more than I do at home and I am able to without the consequences I expected. My husband has hired a huge car - like a bus that is pretty high off the ground. I thought I’d never manage to get into it but already I am swinging in there with relative ease. There is an element of being in a cocoon of protective behaviours with these diseases and I am discovering that bit by bit it is possible, if the time is right, to start breaking out of it and dare I say, begin to fly a little.

Wishing you a happy Christmas and freedom from this disease in 2024. 💖

[LemonZest11]

So happy to hear this Jane. The weather all over Aus is crazy at the moment, but I hope you enjoy some sunshine, sea and happy times with your family. Thanks for your gentleness and wisdom. Happy Australian Christmas, hope you enjoy a barby, some prawns and a couple of lovely drinks. Xx