Hello, Recently joined this forum having been diagnosed with PMR in April. I am 68 years old. My first symptoms were L sided headache stretching down to ear and neck which I attributed to sinusitis, although I hadn’t had a recent cold or nasal congestion. I didn't feel well generally. As well as this I was very sore and stiff - shoulders and pelvic area. I phoned my GP and described these symptoms. She prescribed antibiotics and a decongestant. I also took regular ibuprofen. I became stiffer and unable to reach my feet, had difficulty getting out of bed etc. Eventually self diagnosed as PMR. Blood tests showed raised CRP 27, normal ESR. My GP agreed it was PMR and prescribed 15mg Pred. Nearly all pain and stiffness gone within 48hrs! Recent blood test showed CRP now 6.7
I had always understood that GCA was characterised mainly by a crushingly severe new headache but this forum has shown me otherwise. Now realise I may have/have had some GCA symptoms. 1. My initial one sided headache/earache, no longer so severe but am generally headachey and have sore neck and back of head, 2. Have tender outer ears and around the ear area, most noticeable when lying on my pillow but ears feel strange generally. 3. Had two incidents of jaw pain when eating before starting Pred but didn’t know what it was at the time. Haven’t had it recently. 4. Have slightly noticeable veins on L temple. I’m due to go to Mallorca for a week on 31 May and am wondering what to do. Can anyone advise if the Pred I am taking (now 13.5mg) could be ‘dampening down’ GCA symptoms meaning I still have underlying GCA? I have worked as an artist over the years and my eyesight is precious to me - sorry, that sounds stupid - I know it is precious to everyone!
Most of the good rheumatologists mentioned here are in England or Scotland. Could anyone recommend someone in N.Ireland? I might try and see someone privately before my holiday. Sorry for this long winded explanation. My anxiety is getting the better of me and I can’t seem to think of anything else. I appreciate that many of you have serious health problems and still find the time to help and reassure others. You are wonderful people and I am very thankful for your kindness and that this forum exists.
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Rache
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Welcome to the forum. Sorry you are having all these worries. I only have pmr but I am sure our members with GCA will be along to advise shortly. Take care
My impressions from other NI patients is less that you look for a recommended rheumy as a rheumy at all!! On the NHS the waiting time was something IRO 18 months, could be longer by now. There is said to be a very good one in Dublin at the Sports surgery clinic - but that was a few years ago - and I know a few have travelled there for private appointments.
The basic test is "are all the symptoms resolved on x mg pred?" Were all your niggles gone with your starting dose? While jaw pain is concerning, visual symptoms are the most worrying and the high doses are needed for that to reduce the risk of visual loss as quickly as possible. In the absence of those symptoms many doctors feel that 15-20mg is enough. I had jaw pain and scalp pain for a month or two - they went away but have never returned since I have been on pred despite never being above 15mg.
Many thanks for your prompt reply. I find it very reassuring that your jaw and scalp pain never recurred after the first 2 months despite not going over 15 mg. Apart from sore neck and tender ear area and a generalised headachy-ness, I am much better than I was before Pred. I suppose I will just carry on with a ‘wait and see’ approach. I will make sure to take enough Pred with me for any emergency on holiday. I had contacted Caroline re Lisburn group but last meeting was postponed due to an illness in her close family. Northern Ireland really is a backwater in so many ways 🙁
no it's not a backwater. i have had sterling service from nhs since1998 when PMR appeared. My GP managed my PMR but then RA developed in 2015 at age 72 and RVH , then Musgrave have really helped. get yr GP to refer you; i'm told BCH and D'donald are good too... depends where you are.
BTW you do know to go get yr eyes tested annually .... it's a good 2nd level check up ; ours was the first to detect glaucoma and several years later developing cataract in husband. An independent optometrist in BT8 7HL if you are near there. :}
Thanks again GranAmie, I do have annual check ups. My next is due soon. It’s with Specsavers. Think they have all the up to date technology hopefully 🤔
My last comment was about the lack of rheumatologists and other facilities generally, not anything to do with the local PMR-GCA group - in case of any misunderstanding
I saw Dr Riddell, she operates out of a clinic in Hillsborough and the Ulster Clinic. She diagnosed my PMR in minutes, despite me being “not old enough’” to have it and bloods that weren’t very elevated either.
I hope you are lucky like me and don't have GCA - however do be very careful not to wait if symptoms get worse - prompt action can be a sight saver. They drummed it into me even when I was on the initial 60 of pred - that the slightest change and I was to present at ER! It turns out they panicked more than a bit - but I know my brother was very lucky to take notice of his eyesight changes and he didn't have any pain. These diseases seem to have a host of different symptoms for different people!
There are 2 private clinics in Hillsborough with Rheumatologists who I’m sure you could get to see before your trip to Mallorca to make you feel more at ease. Most of my care from 2014 has been under Neurology in the Royal and that’s were I was diagnosed with GCA and PMR. However this year I have seen a new Rheumatologist Dr M McHenry in the Royal who has been very thorough and sending me for endless more investigations. I also saw Dr G Meenagh some years ago at the Orthroderm clinic in Hillsborough and was impressed with his knowledge of GCA and PMR. Hopefully you can get to see someone to reassure you as the NHS waiting list for me in 2014 was 18 months and I’m sure it’s unfortunately a lot longer now.
Thanks, Caroline. It’s good to hear from people in my part of the world. Will look into seeing Dr Meenagh although I was reassured by PMRpro’s post and am not quite so anxious at the moment. The waiting list is dreadful!
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