Hi everyone, I'm in North Yorkshire, close to Cum... - PMRGCAuk
Hi everyone, I'm in North Yorkshire, close to Cumbria and Lancashire! Are there any groups for PMA and GCA that we can attend in person? x
yes there is. PMR&GCA UK North East support meet in both Gateshead and Middlesbrough. You have just missed a Middlebrough meeting but Gateshead meeing will be held on Monday 27th January at Gatesehead Library. pmr-gca-northeast.org.uk/ne...
Hope to see you there
Hi. Thanks for the posting the info about the Gateshead meeting Pam. Also if you are close enough to get over the Pennines, and it's not too far south, there's a group in the Greater Manchester area (meet in Leigh). Next meeting will be a little while to wait, but 11 March, at Sporting Lodge Inns Greyhound Hotel, Warrington Road, Leigh WN7 3XQ, at 1 pm. All welcome!
Hi
This is too far away from me, I live north west Yorkshire, near to the Cumbria border, going towards Kendal. How could I get a group going in my area?
Helen
Hi heli13 I live in Cumbria and would also like to go to a group meeting but feel I amout on a limb.
Hi chullerman
Where in Cumbria are you? It would be helpful if we could get a group of people together in this area. Do you have PMR and GCA? I have both and can't get below 40mg steroids, due to go on methoxatrate injection soon, but worried about side effects.
Hi - please see my reply to the original post - may see you at a North Cumbria meeting?
venezia1
Hi someone just told me there is a meeting in Penrith, but I don't know when or how often! Helen
Hi - this is a bit late - only just read your post. I live in South Lakes where there is no group, so I go to the North Cumbria's group which usually meets in Penrith or Carlisle. Don't know when the next meeting is - there are only about two a year. Hope this helps.
venezia1
Hi Penrith sounds ok to get to. How do we find out when the meetings are? Do you have PMR and GCA? Its a difficult condition to cope with and nobody I know has heard of it! Helen
Hi - the meetings are announced on the NRAS website or in the newsletter. I've had RA for nearly five years and GCA for nearly two. Unfortunately I also badly need two hip replacements but the surgeons don't want to operate until I am down to 10mg steroids - at present am on 17.5 and 15mg alternating days - can't seem to get below 15mg without the GCA symptoms flaring. The pain is dreadful - am on a huge amount of medication including morphine which doesn't really help unless I take enough to knock out a donkey.....and have all the usual steroid side effects, like moon face, thin skin and bruising, hair loss, swollen abdomen etc. Like many others on the forum I sometimes feel that the steroids are worse than the disease, but at least I won't go blind!
See you at the next meeting, I hope.
V
keep messing up sending replies!
still messed up reply!
I just typed a long message and messed up sending it! It's an awful condition to have, very scary and you never hear of anyone local who has it! I'm on 40mg steroids which I'm having trouble reducing, but going to try reducing by 1mg every fortnight and do it very slowly as they want to put me on methotrexate injections which I don't want to do as the side effects sound awful! let me know if you hear about the meeting and maybe we'll meet up there. Take care, Helen x
Hi Helen - I started on 80mg when first diagnosed - consultant being very careful! I got down to 15mg by 2.5 drops, and had a bad flare when I tried to 12.5. Accepted wisdom is as slow as possible but I still had a flare when i tried 1mg - but matbe I wasn't ready then, so am going to try again alternate days. A fortnight is still on the quick side - many recommend a month.
Re Methotrexate - I've been on it for years apart from the period when I was on 80mg steroids. I've never had any bad effects from it except fatigue, which gradually wore off a bit, and so I recommend it! But I know some people react badly to it, so my advice is suck it and see!
All the best - try that long message again?
Vx
