RoAcetmra, inflammation and GCA

I agree with you. I take Actemra/Tocilizumab starting in June of 2017 and Prednisone. According to my Rheumy, who I feel is very good, Actemra is not a substitute for Prednisone nor does it cure GCA and PMR. It is an additional drug to help decrease the amount of Prednisone you take and you can still get Flares (I did). I am no expert but you still have to taper the Prednisone wisely. The Actemra/Tocilizumab helped me decrease my Pred dose to 4.5mg when I was stuck on 26mg of Pred but it took a year, I started at 60mg. I hope this helps.

Thanks so much Charles, that is a great help and answers my question also. My rhumys reason for giving me the Acetmra was two fold, to enable me to reduce pred quicker and by staying on it for a year, the GCA would go into remission and I can come off it. However, the links Eileen sent regarding this makes for depressing reading in that after a year on Acetmra, a significant amount still got a reoccurance of GCA and had to resume treatment. So that's interesting, and upsetting, that you still got a flare while reducing! How much did you increase your dose by and for how long when you got the flare? I feel as I'm getting niggles in the temple that I should increase for a couple of days, to get rid of any inflammation that may be building. Great for you to be at 4.5mgs, hope things stay settled for you at that🤞 Again, thanks for your reply!

I think your rheumy doesn't understand what he's read: "by staying on it for a year, the GCA would go into remission" is not a conclusion you can draw from the documentation. It might - but it might not.

I think it's as you said before Eileen, that he grabbed at the new option but didn't read the reports. He can't have cos if he did he would understand it!! If I can read it and understand it, then he can, so the only conclusion is that he didn't!! It's VERY clear in all the links you sent me that there's isn't a guaranteed remission after the year and that there have been cases of breakthrough GCA while on the treatment, so as I say if I can understand that, then surely he would IF he had read any reports!! I'll have to go in to the appointment armed with printouts of your links with the relevant paragraphs highlighted. Thanks again Eileen💞

All the very best - I'd love to be a fly on the proverbial wall!

I'll let you know how I get on although the appointment isn't till next week. I'm actually looking forward to it now, armed with my information thanks to you!! It'll be interesting🤔

Thank you so much Eileen, I hugely appreciate the efforts you have gone to in answering my query! I can almost guarantee that my rhumy hasn't read that, or any other report! He is an arrogant man. Any time I have brought up information from this forum or anything else I've learned, he will say, oh you've been on Google again!!! Like you're not supposed to go to him with any of your own information! I've queried about my ESR/CRP because I generally have low readings, he doesn't buy into that, doesn't buy into the negative biopsy doesn't mean a negative, he insists on these big drops in doses, and now this 're the headache!! I'm due back to him in 2 wks, when I'm supposed to be at 10mgs for 5 weeks but I reduced at 10% So still only at 16mgs. If I tell him I've had 'the pain is in my temple, he'll say I don't have GCA and quite likely leave me in a dangerous situation!! And as for getting rid of all the inflamation, I honestly haven't been in so pain in a long time!!! It's So disheartening having to go to a doctor who is supposed to help you and you have to battle to tell your side of the story and try to justify your arguments only to be dismissed because you're 'only' a mere patient and know nothing!! I will go armed with your information and see where it gets me and if, as I predict, it gets me nowhere, I will have to change rhumy. Unfortunately there'll be a long wait and I'll have to start the story over from the start, but if that's what it takes, so be it!! Thanks so much again Eileen, I really appreciate it💞

Here is some more - thankyou google but they are official, medical literature! Maybe your doctor doesn't know how google works? I don't HAVE to have PubMed to find medical stuff. Luckily the Canadians are generous like that.

It is clear from this summary report of the GiACTA trial 

https://www.nejm.org/doi/full/10.1056/NEJMoa1613849

that a small proportion of patients do not respond to TCZ and in the discussion it says

"It is important that clinicians treating patients with giant-cell arteritis maintain vigilance for vision complications and other disease-related events, even in patients receiving active therapy."

TCZ is a very efficient steroid sparer - but it DOES NOT mean there is no chance of a GCA flare if the pred is reduced too far.  Only about half of patients achieved the primary outcome - remission at one year. So what about the other half?

On p43 of this

https://www.cadth.ca/sites/default/files/cdr/clinical/SR0534_ActemraGCA_CL_Report.pdf

they say

"The time-to-first-flare data suggested that flare may be delayed with weekly tocilizumab versus both placebo groups and for biweekly tocilizumab versus the placebo plus 26-week taper group, with hazard ratios ranging from 0.23 to 0.39, and 99% CIs that excluded the null. Median time to first flare for tocilizumab and placebo groups could not be compared as fewer than half of the patients in both tocilizumab groups had experienced a flare by week 52 (23% and 26.5%). This outcome was also outside of the statistical testing hierarchy."

i.e. about a quarter of patients flared inside the first year as pred was reduced.

Later they say 

"The tapering schedule is based on physician experience modified by patients’ symptoms at each follow-up visit and supported by changes in laboratory data. There is no established protocol for steroid tapering. Most physicians would continue low-dose corticosteroids for the second year of disease and then attempt a taper to 0 mg/day. Fewer than 50% of patients can stop steroids completely and are on life-long therapy."

The long term study results are not available yet - and your current rheumy has no grounds whatsoever for his claims that any symptoms are definitely not GCA. Nor can he have significant experience with using TCZ in GCA. Even if he used it in the GiACTA trial the entire study was not particularly big and it was ongoing all over the world to get even those numbers. He may have seen it used in a few patients - no more.

I do realise the difficulty of finding another rheumy. But if this guy continues to be so arrogant you must. The start needs to be with your GP/PCP to ask if they can consult other rheumies, preferably ones involved in the GiACTA study.  Then work from there,

Eileen, you're an absolute treasure, thank you so much again for your efforts! I do suspect that my rhumy hasn't read much new data about GCA and I get the feeling he hasn't treated many with it. He does seems like one of these doctors, as you say, grabbed TCZ with both hands believing it "cures" GCA! I will definitely be printing these links out and bringing them with me to my next appointment with highlighted paragraphs . The problem with rhumys hereabouts is that they are pretty thin in the ground and the likes of mine and others of his ilk, do their utmost to keep new rhumys out, so they have their own little cartel and would be very buddy buddy! I Could go further afield and I will definitely research and see if I can find one involved in the GiACTA study. Once again thank you for the excellent information, exactly what I need to argue my case, you are wonderful 💞

Thank you Michdonn, you're always great to promote the positive attitude and you're so right, it definitely helps. I agree with you 100% with regards to Eileens help, where would we all be without her help🙏!! I've started my search for another rhumy so 🤞 there'll be one around that'll know more about our condition and will have more of a vested interest in actually treating me! Thanks again and I am smiling😁😊