Just noticed this site is based in the UK!

[twriller]

I came upon this support group by accident when I was looking to see if tumeric would help with inflammation for GCA. Never realized it was based in the UK till just now. I hope it's okay that I'm in the US and on this site I didn't bother to look at to see if there was one here. Just wanted to let all the UK people know that my husband and I literally the day before this pain and everything started returned from a 14-day trip to the UK. At age 70 I had never been there and my mother was born in Scotland however adopted by an Irish couple so I didn't know any relatives but just really felt I would love to go there. Our first trip across the pond ever and we spent 14 days in England, Scotland, Northern Ireland and Ireland and it was spectacular!

[SheffieldJane]

Welcome to the site! We have a number of Americans here who are active members and other nationalities too. The only Brits awake are insomniacs like me. Hence the quiet.

I love that you loved it here. Places can feel like roots and family too. I look forward to hearing more about you and your health concerns.

I incorporate turmeric into recipes, this appeals more than supplements.

[Yellowbluebell]

Welcome to the forum. Could you please give us a few more details about yourself such as when you were diagnosed and what dose of prednisolone are you on? Our expert on gca, Dorsetlady will no doubt be along later in the morning to give you some advice.

I am not certain about turmeric and if it interacts with your pred but others will know and will reply later. Please feel free to ask any questions you have. YBB

[PMRpro Ambassador]

No - not xenophobic here! There are 3 forums for PMR and GCA, all of them based in the UK! The original one was patient.info, set up as Patient.uk by two doctors in the north of England in 1996 as a group of medical authors to produce a resource for medical staff and their patients, delivered directly into GP practices via healthcare software provider EMIS. Patient forums were added, first separate and then a joint PMRGCA forum where 5 women met and started the movement that became the seeds of the national charity PMRGCAuk and started a charity in the NE of England which also had a forum, there was already one in Scotland. All are international though!

There was an attempt to get a sister site up and running in the USA which failed - you need a critical mass of members for it to be alive and relevant and you also need "resident" anchors who maintain the standard of information. So - here we are for everyone. As Jane says - most activity is during European daytime, except for the insomniacs! And that is why it is important for the profile to tell us your details - especially country because things vary quite a bit in terms of services. Only the diseases are the same both sides of the Atlantic - though apparently there are doctors in the US who think they are different!

[DorsetLady PMRGCAuk volunteer]

Hi,

We have no boundaries on here! All are welcome.

We all suffer from the same problems wherever we are - and although it may be predominately UK we give the same advice - the names of medication may change slightly and spellings and phrases may be different but that’s all.

It’s always good to know from someone’s profile where they live so we can amend our advice accordingly.

As for turmeric - it is recognised as being good for inflammation- especially if used in cooking, but if you intend to take supplements you need to check with pharmacist it’s okay to take with other medication.

[Hidden]

Along with knowledgeable advise and a warm sense of belonging, ( this is my pmr

comfort place ), you’ll learn some great British slang. 😁

[Blurry62]

Welcome fellow American!

The UK is way ahead of the curve on GCA. You are in the right place for information and support. It took me a year and a half to find a doctor who understands the disease however, when I did he said "the UK is ahead of us." He has been very open to the information I've carried to him from this site. Previous doctors were not-- at all. I can't encourage you enough, stress enough- be your own advocate . ..There is a huge amount of inexperience treating GCA. Patients and medical professionals are partners , it's YOUR life .

[twriller in reply to Blurry62]

Thank you for the welcome. Didn't know the difference between the US and the UK in this matter. Good to know. I don't think my rheumatologist is very knowledgeable in this, she's already said maybe I should see someone else. When I see her on Wednesday I'm going to say please find me someone that is experienced in this and that may have had a patient that wasn't" typical"! She is in a practice at one of the most prestigious hospitals on the East Coast so I'm sure there's someone in there with more experience than her. There are not many rheumatologists around especially in my area. When I first got Sjogren's syndrome 11 years ago I didn't react typically to that medication either and the doctor I had at the time kind of got mad at me and I'm like it's not my fault what can I tell you. Seems like the same thing is happening here because even 60 mg and even 80 I still have pain in my temple. She I think is leaning towards will maybe you also have something else because my biopsy was positive so they cannot argue with that! However, when I was diagnosed with PMR 20mg took care of it although I'm still on five till this new GCA five and a half years later I could never get below five.