I asked Dr Hughes about the Leeds research , evidently the Dr. Is still doing the compilation.
I have been told that there was an article in the Mail on 21 st. on PMR GCA mentioning that Tocilizumab may be available in the near future, I have yet to look it up. We must be optimistic !
I don't wish to burst anyone's bubble, but tocilizumab may only be available for GCA steroid-resistant cases and isn't likely to be available for PMR anytime soon. The cost is exorbitant! I'm sure PMRPro will be along soon to give out the facts and figures.
As I said I haven't read the article , I did think it unlikely though my friend who read the article did say that NICE had approved it. I seem to remember PMRPRO quoting £12,000 . At least it is a beginning !
In his speech at last year's AGM, Professor Dasgupta included latest information about Toxilizumab in the treatment of GCA, saying that during this year we should have licensed new medication for GCA - I would like to think he was referring to Toxilizumab especially as trials have shown that it works. Apparently a large multi-centre study was due to report on the drug last November. He added that there are other trials going on, including a new trial in treating PMR. So, Mourneriver, certainly cause for optimism!
Hi Mourneriver
Here's a link to the article in the Mail OnLine
dailymail.co.uk/health/arti...
Always good to read it for yourself!
Best Wishes
Mrs N 💅🏼
Thanks I was going to , but today has been a day of fog , well, you know the feeling ! But, if it is in the Mail it must be true !!
There was a consultation last summer about using TCZ for Takayashu's arteritis (almost identical to GCA but in younger patients and more rare) and GCA (in over 50s). The decision was it could be used for Takayashu's but there wasn't adequate evidence to justify its use in GCA. They would however reconsider if further evidence was presented. Given this was done just a few months before it was known the GIACTA study would report it seemed a bit pointless to me. However - they do seem to be reconsidering, there is a further consultation.
There are pilot studies in the US and I know a few patients with PMR who have been given it. It seems to work. But there are not yet longterm studies to show how long a remission will be sustained without further doses of TCZ - at once a month it costs about £12,000 per year. If they merely have to give a few doses and a sustained result is achieved then maybe it will be approved even in PMR for patients who are unable to get off pred. But the cost ratio is not encouraging and even TCZ has some significant side effects. If it turns out that it will be much the same as in RA, that continuing use is required, I honestly find it difficult to believe the NHS will offer it. It is skint. And pred is known to work for most patients and is CHEAP.
TCZ is relatively new - there are no records about the long term adverse effects. Just like alendronic acid or omeprazole, it may be that with time it too will show it has feet of clay. At least after 60 years you know exactly where you are with pred!
GCA Training in Scanning at Leeds 
Research data that may be of interest - Comorbidity data PMR and GCA 
Thyroxine/PMR/Steroids/AA
Immune disorders new research
