Not sure if this has already been highlighted- the fact that I had to tell my Rheumatologist about it suggests not many people will have picked it up.
If you have been on Tocilizumab, as I have, please get your consultant to submit your information to this registry so that there is as much evidence as possible on the “ safety and efficacy” of Tocilizumab ( and will hopefully influence NICE when they come to reconsider their recommendations, supposedly some time in 2021, that Toc. can be prescribed for GCA not just for 1 year but for as long as needed).
Sorry.. but is this better than Pred and are side effects better or worse.I read that these new biologics(my knowledge is very limited)all cause cancer and terrible long term problems.thank you.
I can only speak for myself. I have been on Tocilizumab sine late July 2019 and I can honestly say it has been a lifesaver and a life changer. I cannot tolerate the levels of Prednisolone needed to control my large vessel arteritis/ GCA ( severe psychosis, almost got sectioned, pre- diabetes, hair dropped out etc etc), and have been off all other meds. except Toc. since late March last year.
I am now trying desperately to be allowed to continue- my consultant recently wrote to tell me that unfortunately it has to stop in April (unless the NICE guidelines change before then, or they reconsider, and treat us as they do R.A. patients). She did say that I could have a PET-CT scan 3 months after I stop Toc., plus more frequent blood tests, but as I have written back to her, what good is monitoring when they can not offer me any treatment ( I have no symptoms of my disease, so scans and blood tests are all I have to say I’m really very ill!). Probably better not to know and wait for the stroke or aneurysm to see me off.
I have been really well since being on Toc.
I guess all the data has to be collated ( on possible increased cancer risks etc.) but from my point of view, I would take the chance rather than try to live with the complete misery caused by Prednisolone.
It’s different to Pred in that it targets a receptor for Interleukin-6, which is involved in inflammation. There are other things that fuel inflammation though. Pred is more broad brush so if it happens to be the case that your autoimmune activity is run more by something different to IL-6, the Tocilizumab won’t be as helpful. For some people it is a total game changer and for some a life saver, so like all drugs with risks, it is a trade off. Like all drugs, not everybody gets the side-effects.
They aren't THAT new, tocilizumab has been in use for juvenile RA for 20 years and more widely for RA since 2008. However, the view that biologics are the cause of any increased risk of cancer has been discounted - it is the inflammation of the disease they are being used to treat.
"People with rheumatoid arthritis (RA), and some related inflammatory diseases, face the reality of a slightly increased risk for developing certain types of cancer. Over the years, some researchers have questioned whether commonly used inflammation-fighting medications – particularly biologics – might take some of the blame for a heightened cancer threat. However, growing evidence tells us that chronic inflammation is the primary link between RA and cancer. ...
The association between biologic drugs and cancer used to be more controversial than it is now. By suppressing specific components of the immune system, it seemed plausible that biologics might increase cancer risk. But while that possibility stoked concerns about the safety of biologics when they were introduced in the 1990s, more recent news disputes that notion.
Early on, studies suggested that biologic users might have up to a three-fold increased risk for developing cancer, particularly lymphomas. However, more recent research appears to clear the medications. A 2016 study published in Annals of Rheumatic Diseases involving more than 15,000 RA patients who took a biologic found no increased risk for lymphoma."
The risks associated with untreated GCA, in particular, are far higher than anything relating to the use of tocilizumab to manage difficult cases. GCA can lead to stroke with loss of vision being a particulalry feared and likely form. And long term there are other cardiovascular effects.
There are potential severe adverse effects with tcz or any other biologic, but there are risks in using any immunosuppressant drug including methotrexate and leflunomide. But there are potentially fatal adverse effects associated with paracetamol which is easily available in any supermarket in the UK and USA.
This seems to be part of the UK GCA Consortium and my Rheumatologist enrolled me onto that when she started me on TCZ. I see that the email address is at Leeds University, which is where my Rheumatologist is!
(Biobank is something different, I believe, as I've been a 'subject' in that for many years.)
I believe this is a new ( Tocilizumab-specific) Biobank. I too have been part of the main Biobank since it started. I’ll have to re-read all the specifics to be sure.
In the link you gave, in the penultimate paragraph, it mentions a 'national biobank' with a small 'b', rather than 'B'. I assume they are just referring to a pool of data etc in the generic sense, rather than Biobank the organisation. Maybe? Whatever, thank you for raising this, as the evidence needs to be collected.
I started TCZ in March 2020, so any extension for me will be only a matter of a few weeks, but I've not heard anything yet and have only one dose left!
I'm still on 5mg pred, as my symptoms returned during the weeks I reduced to 3, 2 and 1mg. I'm seeing my Rheumatologist in 2 weeks!
Best of luck , Rugger. I haven’t had any face to face appointments for nearly 2 years, but I’m fine with that. My lovely GP is going to push my case (she mentioned an “ Individual Patient funding” request), plus I shall be writing to my MP, to Matt Hancock, and to Woman’s Hour- got to try everything now... supergluing myself to the NICE headquarters ‘ railings will be the very last resort.
On a brighter note, a number of pharmaceutical companies have been developing generic versions of Tocilizumab (so-called Biosimilars, which should bring the price down and so make them more available) since the Roche licence/ patent expired a number of years ago.
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