Nice guidelines for GCA treatment

[Suzita76]

Hi folks,

I thought those of you who don’t mind reading scientific stuff might like to look at the NICE guidelines (recommended for GPS/ consultants to follow in the U.K.). Here is the link cks.nice.org.uk/giant-cell-... Best wishes,

[DorsetLady PMRGCAuk volunteer]

There’s a lot of sensible advice in there - unfortunately not all being followed if you read some of the posts on here.

I think it’s some doctors that need to be educated rather than patients!

Thanks for posting.

[Primarose in reply to DorsetLady]

I quite agree, I actually followed the advice as I had no other information except a tapering schedule, which didn't really work for me.

[dchandler7]

I am 42 yr old, living in toronto who is desperate to get info so I can get diagnosed. I have had the normal blood tests to check twice ESR and creatine and they 2 doctors say I am to young to have it, but I have all the symptoms and nothing shows on brain MRI. Current symptoms after a bad virus they don't know what was, tension headaches on temples gradually getting worse over the past couples and more frequent (few times a day), and sometimes they are followed by TIA symptoms such as weakness of numbness in leg, arm, hands, pins and needles in finger tips, little vision problems, now my jaw and neck are getting quite stiff are times, like cracking and popping, but the usual tension is on temples both sides, extreme fatigue, nauseous, light headed at times. I was very active person before this all 3 months ago, but now if i do anything with a little exertion i get tension headaches followed by TIA (stroke)symptoms.. doctors treating it like a joke cause of age and nothing shows on normal blood tests. Has someone gone through this where it hows normal on blood tests? I am scared to death to try to do do anything active now, and any info I would grateful as you might save my life. So I can go back to doctors to force them to test more.

[Nuff1]

Thanks for the link.

I see that the article was produced in 2014 and no updates since - wonder if there are any more recent findings or guidelines in the pipeline as it looks as though OH's GP is moe or less following this.

[Primarose in reply to Nuff1]

Exactly, 2014 and still no further forward!

[PMRpro Ambassador in reply to Nuff1]

The newest international guidelines are in the process of ratification - they were drawn up in 2016 but the final process is long and slow...

You can read a lot about them here:

keepandshare.com/doc/819279...

a presentation given at the Glasgow PMRGCA conference in 2016 by Prof Dasgupta.

The NICE stuff is fairly useless IMHO... Not that I can read it as it is only available in the UK.

[jinasc in reply to PMRpro]

With a bit of luck and a fair wind, early 2019.

Then BSR will issue to Rheumatologists and they will be available on the NHS website, Patient.info and hopefully PMR GCA UK.

NICE Clearance and then down to GPs who knows?????

[PMRpro Ambassador in reply to jinasc]

Hey - what world are you in? A parallel universe? That's like the signs on the motorway roadworks saying it will be finished in Summer and it is now November...

Is it too much to hope for early 2019??????????????/

[jinasc in reply to PMRpro]

No and I have altered the date. I was away with the fairies.................xxx

[PMRpro Ambassador in reply to jinasc]

You're allowed xxxxx