Clinical Update

Hello all,

Here's a link for tocilzumab which was just recently approved in the US. If you haven't seen this video, it is basically a summary of the results for the US clinical trials. My rhuemy would prefer I try this treatment as an option rather than methotrexate. My insurance denied at first pass as the FDA had not approved it as yet. Only days away, so we are appealing I am still educating myself on options

It is written for the medical community, so enjoy!


10 Replies

  • Brilliant - thank you!

    just wondered - were you able to understand it all?

  • No, at least half of it was way over my head, and as you will recall, I was one of the Patient Reps at the meeting with Roche before the clinical trials.

    My GCA is now in its 6th year of remission.

    Speak soon............

  • PMRPro,

    The answer is yes and no. I've worked in the medical device and Pharma industry (over 25 years) and have been a team leader in multiple clinical trials. I also perform due diligence for companies looking to acquire med devices or Pharma drugs so I am very familiar with the regulatory process, language etc.

    My background is mostly ophthalmic not auto immune. I did not expect to understand it all on first pass. I'll review it several times and take copious notes. It's a little tricky as the clinical study can create definitions for the study's endpoints. In this study they defined "sustained remission" as an absence of GCA symptoms, normalization of blood tests, and tapering of steroids. The study endpoint is the Actermra patients achieved sustained remission sooner, better? I need to look at the numbers in detail and the stats applied to better understand so I can make a decision if my insurance approves the medication.

    I know the doctors at Stanford are anxious to get hands on experience with this drug in their practice. I just am hesitate to be first in line.

    Sambucca's post is a great summary.



  • No - just wondered as I do understand it all pretty much. Need a closer listen to the second part which wasn't the GiACTA trial but I picked up 3 facts of interest: no point taking aspirin in GCA, you have a 3 day window to get a PET scan done after starting pred and methotrexate seems to reduce relapses of GCA (I assume during the taper, not later) but only when started within a month of diagnosis, after that there is no point.

    I was also pleased he spoke about the other MAB they are trialling - there is a centre in Dublin by the way. It is cheaper - not a lot but noticeably so.


    You need to read this in full.

    Please remember that it is not a cure. How I wish it was................ and how I wish it was not so expensive.

  • Thank you for there anyway to save it or the address online?


  • Hi Doraloise,

    Which link do you need? You should just be able to copy the link or once you open it save it to favorites. Otherwise, I can message it to you. Let me know.


  • Tj2017, I figured it out, thank you....there are several on Actemra in the Facebook GCA support group (one has had 30 injections/infusions) if you wanted to ask questions/get other's experiences......good luck......


  • Hi Marie,

    Thanks for your post. I would like to learn more about your experience with Actermra, if you don't mind sharing. How long have you been taking it and why did you chose to try it? How about methotrexate or other meds?

    Thanks in advance.


  • They aren't leaving you to taper at that speed below 10mg are they?

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