Hello again friends on this long and treacherous journey, I am reporting back with some good news, yay! While I have remained on the three weekly (rather than weekly or fortnightly) tocilizumab routine, my inflammation has remained under control, so far. I have just moved to 1.75mgs pred on my cautious taper (too cautious according to my rheumatologist), and over the past couple of weeks I have increased my resistant exercise regime. I’m only lifting 2kgs but the exercises have really helped that bloody shoulder of mine, and I have been feeling the best I have felt in months and months. I’m almost too frightened to say this, don’t want to put the mockers on at this stage, but things are progressing slowly but well. Let’s see what this dose does!! Thanks for being here, no one else gets it. xxx
A further update on the old taper journey ... - PMRGCAuk
A further update on the old taper journey ...
Looking good so far! You're managing any adrenal issues at that taper????
Interestingly, I seem to be ok at the moment. Do you remember a couple of months ago (I think), I was taking ibuprofen, against the advice of those on here? I had quite a lot of shoulder/neck pain and I’m wondering if that might have been related to adrenal? Or perhaps that is still to come?
Could well have been stressing you out - and not enough adrenal function to really cope.
Let’s see if I make it through this dose. 🤞
You are right to be cautious, you have come this far and have obviously learned to listen to your body. So I would just continue slowly but surely and please do not overdo the exercise.
Walking is good, lifting be careful, shoulders can be tricky.
BTW more people 'get it' now than 13 years ago............🤔 methinks.
Haha, not where I am. I don’t even talk about it, I seem the faces glaze over so I just tell my husband who is a darling. Thanks for your advice, I really appreciate it. I walk, of course, but the weights have really helped, it’s quite remarkable. I won’t increase the weight, but I will increase the reps if it feels OK. I really know about tricky shoulders!!
I agree. One of my friends finally got it when a relative of hers developed a different autoimmune disease, much more serious than PMR, which is also treated with pred. It's a pity more doctors don't "get it" either. Fancy you being down to a vanishingly small dose and still being told you are moving too cautiously! S/He needs a cuff up side the head to knock some sense into it!
Inspirational. Today I will have missed my third dose of Tocilizumab because I am waiting for a chest X Ray due to breathlessness and an abdomen scan to look at my liver. I had awful headaches yesterday and I am trying to decide whether or not to resume Tocilizumab. I only have 12 weekly doses left. Instinctively I feel that fortnightly would suit me better. Have you had no symptoms in between Tocilizumab injections? I think my Rheumatologist is on holiday so I am flying without a pilot currently. Treacherous is the word. I took a double dose of Pred by accident and felt great, then the head started. I am still on 10 mgs.
Oh Jane, it really is a journey, poor you. I have found absolutely no difference in taking the tocilizumab less frequently. I had developed neutropenia and so at first the jabs were changed to fortnightly, and then to 3 weekly. Now I wonder why they are necessary on a weekly basis. The other thing about the jabs is that the dose is fixed and we are all difference sizes, so if someone is bigger then the effect, I guess, might be less. I am not a big person and so perhaps I get enough having it less frequently. Or it’s just a big con on the part of the manufacturer and maybe we just don’t need it as frequently. I really don’t know. Have any of your carers ever suggested taking it less frequently than weekly? It also means that the script lasts longer, of course.
In the clinical trial there was a marginally better result with weekly - but it really was quite small. And some people do do better with 2-weekly not being quite enough
“Do better with 2-weekly not being quite enough”, I don’t understand this comment.
Or do you mean that some do better on weekly and some on fortnightly, but for some that is not enough? What about 3 weekly?
Every week is effectively the highest dose, doing the injection 2 weekly halves the dose and also the unwanted effects so is often used when the white cells are being suppressed a lot. But reducing the dose like that means that if there is a lot of the trigger for the IL-6 cytokine that cause the inflammation, production might start up again as the effect of the TCZ is waning. And of course - everyone reacts a bit differently.Does that make more sense? Should have said weekly in the middle of that sentence ...
Yes, it makes absolute sense, thanks. You are the trusted source, and we all depend on your wise counsel and research. I, for one, am so grateful to you, always sharing your vast knowledge. Many, many thanks.
It is interesting though, that I am managing on 3 weekly doses. 🤷♀️
Isn't it - I wonder if they'll try stretching it further?
When is your chest x-ray? How long are you supposed to be off tcz before it happens? Aren't they putting you at some risk making you wait a long time?
The chest X Ray and the MRI take place on June 23. I am losing my nerve stopping Tocilizumab without guidance. I have been having pretty bad headaches. I don’t really think that I have a chest infection and my liver enzymes were not yet in the danger zone. I would feel differently if there had been massive relief after pausing the Tocilizumab but there hasn’t. Just a different kind of feeling unwell. I have significant side effects from Pred now ( hypertension & borderline diabetes and cataracts). So upping the Pred is not really a viable option. I may do the Tocilizumab injection tonight and see if I get the momentum to reduce my 10 mgs of Pred. I think in a sense, we are all making this up as we go along. DadCue is right. The aim is to get as low as possible on Pred with the safety net of Tocilizumab. I have always been guided by “ symptoms rule” but they don’t make sense anymore. Maybe fortnightly injections would suit me better.
Caught between a rock and a hard place. 
It would be interesting to find out if an injection of tcz did make you feel better this time. I sure hope you find something.
Just a different kind of feeling unwell. This sentence really got me! Been following your story - you've got such a lot on your plate. Best wishes re the X Ray and scan, and hope there's some resolution to it all.
Thank you! I appreciate you saying that.
I did ask about the frequency and my Rheumatologist said weekly was more effective. I don’t have much pain at all but I just feel rough all the time when on Tocilizumab. When I try to get below 10 mgs of Pred headaches start up. I think fear of what the headaches mean is hampering my progress. I am only a year into GCA.I am sick of moaning but I am genuinely cheering you on! 👏👏👏👏
And I hear your cheers, thank you. Perhaps tocilizumab is not the one for you 😞. PMRpro has told me about trials/reports she has read that confirm it doesn’t work in every case. I just hope, for you Jane, that things improve, and I am cheering you on as well. Sending all my love from Downunder to you 😘
Back at you! 💛🧡
Jane, I have also been feeling for you since the development of your latest heath complications. Also sending love from Aus. 💝
Thank you Meggsy. That helps!
Thank you so much for sharing this. I'm always so pleased to hear success stories. Long may it continue for you. 😀
Thank you. And I am rooting for everyone ... hopefully we can all eventually move forward. xx
Great news LZ, long may it continue! I think the half-life of TCZ is relatively long, so that even after 3 weeks there might still be some drug in your system.
Well yes, that must be true. Hope you are travelling well.
Hello DadCue, it sounds as though you have things under control. I have no idea what the forward plan is with regard to stopping the tocilizumab, but at the moment, for me, it’s about coming off pred. Because my doses are now 3 weekly, I have a stockpile of the stuff. I continue to fill the prescriptions because there is an end date. I am planning to keep trying to reduce, and then I guess I will ask the questions about tapering the tocilizumab, even though I have quite a lot of it left. Who knows what the future holds 🤷♀️, just keep moving forward and enjoying my hopefully not temporary, situation.
You wouldn’t try stretching it out, say, from weekly to fortnightly to longer, as a form of taper?
That is very interesting information. Thanks for sharing it, I think that will be helpful on my journey. Good luck to you, would like to stay in touch. xx
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