Could i have GCA?

[Runrig01]

Hi, I am new to this group. I am 47 years old and have had neck, shoulder and pelvic pain and stiffness for 15 months. It came on 4 days after having flu vaccine, my GP has said from outset I have classic polymyalgia symptoms. He referred me to Rheumatologist who was sceptical because of my age and normal bloods. However after lots of tests she started me on Prednisolone 5 weeks ago, and I was virtually pain free after 4 hours. Since Sunday I have had a low grade ache in my Temple areas of my head and lots of tenderness in the temple region. I also have had blurriness of my vision on and off for the past few months which I put down to my Amitrtiptyline tablets. I am due to see my Rheumatologist on Wednesday, but am I worrying unnecessarily.

[ritter]

Hi no you are not worrying unduly,it sounds like you could have temporal arteritis , it is also know as giant cell arteritis,what mg of prednisolone are you on at the moment?you must let the Rheumy know about your temples and vision,and if you get any headaches,I have struggled with this disease for almost a year with no support until I found this site a week ago.if I can be of any further help just let me know.ritter.take care runrig01

[2watsons]

If worrying ,please ring Dr or Rheumatolgist .I had GCA had PMR some years ago then though had cold and neck pain left it to late would like to know how get on .

Number one try hard to do stop worrying

[Runrig01]

Thanks Ritter, I was on 15mgs for 2 weeks then reduced to 10mgs for 3 weeks. The prednisolone has worked wonders for the stiffness, and I only have niggling pains and some tenderness in the muscles of my bottom and shoulders. It has taken 6 months of visits to Rheumy to accept that I may be an "atypical case" , my ESR at its highest is 15.

[Celtic PMRGCAuk volunteer]

Hi runnig

You have reduced too soon from 15mgs and the drop was too steep - far too fast to really get on top of the inflammation. If the dose of Prednisolone isn't high enough to get and keep control of the inflammation then you are at greater risk of developing the linked condition GCA. Reducing from 15mgs to 12.5 would have been preferable.

I have had both PMR and GCA, and, if it was me, I would be hot-footing it to my GP or even to A&E if I had any problems with pain in my head, temple area or any eye problems whatsoever. Once diagnosed with PMR, you cannot ignore the symptoms you are describing. If you have had blurring of your vision on and off for the past few months, have you had your eyes checked by an optician during that time? I'm sure no-one will feel you are being a nuisance if you are suffering from PMR and present with head pain and eye problems. Better safe than sorry, as once our vision is gone it is unlikely to return. Good luck and do let us know how you get on.

[Runrig01]

Had eyes tested 15 month ago, but in view of all your helpful comments have booked an eye test for tomorrow morning. Think it might be useful to have eye test before seeing Rheumy on Wednesday. Thanks to everyone, this is a wonderful site, as I don't know anyone with PMR for support locally.

[pamb in reply to Runrig01]

One of the classic symptoms for GCA which I had not linked to other symptoms was pain in jaw to such an extent could not eat properly. Agree re level of steroids, I started off nearly a year ago on a very high dose (now down to 8 mg) and am having a textbook recovery. Lucky to have a good GP and this site has enabled me to have confidence in the way he has treated the condition (regular blood tests and routine GP appts).

[Celtic PMRGCAuk volunteer]

runnig

"I don't know anyone with PMR for support locally."

Whereabouts are you? There might be a support group near you.

[Runrig01]

I live in East Kent, near Dover. Thanks for everyone's help This is a great support group.

[pamb in reply to Runrig01]

Hi, I am not aware of support group either, but I live in Dover. Would be interesting to know if there are other sufferers in the area.

[Polywotsit PMRGCAuk team member]

Dear Runrig

We can put you in touch with PMRGCAuk members in Kent if you would be interested. Send us an email at [e-mail]. You may find that the optician says that your eyes are fine. This would not be surprising even if you do have GCA symptoms, because the problem doesn't show up in the eyes themselves, because the problem is in the arteries that are providing the blood supply to the eyes. So in a way if the optician says eyes are ok, that's a signal to get yourself round to the doctor!

[Celtic PMRGCAuk volunteer]

Hello again runrig

Unfortunately, there isn't a support group that meets in the Kent area at the moment - the nearest ones to you are in Surrey and Sussex. However, there is a lady who offers telephone support to those in the East Sussex and Kent area if ever you wish to talk to anyone on the phone. All the details are available on PMRGCAuk's website, under Resources/News & Events.

[Celtic PMRGCAuk volunteer]

Oops! I see I was posting at the same time as Kate but she pipped me to the post!

[angeholder]

i was 46 when i was diagnosed with pmr but that diagnosis came through because i had such severe pains in my temples i couldnt even put my head on the pillow i had been sleeping sitting up for 2 weeks then my vision started to go so i went to the doc who immediately said i have gca and tests then showed i had pmr and gca, dont wait until you see your rheumatologist ring your gp today as you definately sound like you have gca good luck hun x

[Runrig01]

Just returned from eye test, the optometrist was lovely and very thorough. She took some photos of the blood vessels behind my eye which were all normal. In the 15 months since my last visit my long sightedness has increased and the reading vision in my right eye has changed quite a lot. She examined my temples, which show no signs of bulging. She feels the dull persistent ache in the temples is probably due to eye strain, as a result of the changes, but told me to mention to my Rheumy tomorrow. Feel more reassured that vessels are OK at the moment. The temples are only tender when I press, she tells me they would be extremely tender to light touch. Thanks for all the support. x

[Hidden]

runrig01,

No you are right to be concerned. I had serious flare last year whilst on holiday in Wales. A very experienced GP at the local A&E department put my dose up to 30mg and the probs with pains in my head and, eyes that were very sensitive to light, were solved, and I was OK to continue with my hols.

I hope you are OK and the problem will be sorted on wenesday.

Good luck,

Pats.

[Runrig01]

Hi folks, thanks for the support. Seen my Rheumatologist yesterday, bloods still near normal. She thinks the tenderness is from Isometric exercises I have been doing recently that physio gave me. so no GCA phew .... To reduce steroids by 1mg per month all going well. I have a slipped disc in my neck from all the muscle spasms, it has pulled my cervical spine straight, does anyone else have similar problem. If so any tips on how to manage pain when severe spasms kick in? I still work and have found some shifts extremely difficult - the irony I am a nurse LOL.