Worried

[Pennypip]

hi, I have joined this group for some advice please.

I was 65 in August and a few weeks later started with painful hips, eye aches and occasional sharp fleeting pains in my temple area. They aren’t constant and some days very few.

I was due to go on holiday abroad so GP did some blood tests. ESR was 10 so reassured me everything ok.

I have had mild lupus for nearly 30 years but Rheumatology discharged me in 2021 because bloods were negative.

I have a GP appointment tomorrow my cholesterol was 7.6 so I think it’s to discuss statins which I have resisted until now.

I’m still getting these painful hips, eye aches and sharp pains in my temples, feeling more fatigued and regular night sweats.

I was thinking of asking for some steroids which I had a low dose years back during a Lupus flare.

I was also going to ask for a referral to private Rheumatologist. I did ring my local rheumatology department and was told by a nurse that my ESR would be off the scale if I had PMR GCA

Any advice would be helpful. Though it’s frightening when you read about this disease and hope I don’t have it. My gut instinct is something is wrong.

Thanks for any advice 😊

[PMRpro Ambassador]

Hi - and welcome, so glad you have ventured over here.

Well, I can tell you now - the nurse in wrong! SnazzyD had stubbornly normal blood markers while her sight was shutting down in the ED! I only have PMR (as far as we know) but it has lasted a long time, My ESR never got out of range, it bumbled along at 16-18 during a dreadful flare where I could hardly move - my personal normal is low single figures. And the only time my CRP was raised was a day where I had a bad atrial fibrillation episode and was back to normal the next week.

Discuss it with your GP and see if he can get you referred back to a rheumy - though sometimes GPs are more use than rheumies! So it will depend a bit on the rheumy, even private. Where are you in the UK - maybe we can recommend one with their head screwed on the right way!

[Pennypip in reply to PMRpro]

Thanks for your reply.

I live in the Merseyside area, and would pay for a consultation for a specialist in this disease. It’s scary what can happen to you with this disease if not treated. Thanks again.

[PMRpro Ambassador in reply to Pennypip]

Put up another post asking for rheumy recommendations and saying how far you would/could travel to see a good one.

[Pennypip in reply to PMRpro]

Hi, thanks for your reply.

I saw my GP today he doesn’t want to prescribe steroids without me seeing a Rheumatologist first but he’s referred me for an MRI on my head and neck and gave me a form to have bloods done again.

He is going to write to the last rheumatologist that I saw in January 21 but that could be 3-4 months before appointment so I’m going to try and do as you suggest and post for a private rheumatologist in my area.

I’ve had a few twinges of pain in my eyes and temples today, not too bad really. Though I have some numbness around my right ear and temple but otherwise feel ok.

Thanks 🙏

[DorsetLady PMRGCAuk volunteer in reply to Pennypip]

I think you need to be seen more quickly than 3-4 months, so looks like the private route…

.. ears can be affected by GCA…

[Pennypip in reply to DorsetLady]

Thanks for replying, posted for recommendations of rheum in Merseyside area 😊

[PMRpro Ambassador in reply to Pennypip]

If there is ANY possibility of GCA, the referral needs to be expedited as an emergency. Hope someone can help with a recommendation. I believe there are some good ones at Oswestry - not sure who do private work though.

[GOOD_GRIEF in reply to PMRpro]

There's something I don't understand about the UK.

When something like this is going on, why don't you go directly to the emergency room at the hospital?

[PMRpro Ambassador in reply to GOOD_GRIEF]

You can if it is an emergency - but you won't necessarily see a rheumatologist as a result and it may be beyond the on-duty staff to recognise. Their job is to deal with life-threatening situations and they don't have access to all the imaging you require onsite because not all hospitals have the relevant department. For example, where my daughter works has a protocol for query GCA - but it means you might be sent to the main unit which is an hour away. The ED has CT and other imaging - but none that can diagnose GCA.

You still have to get into the system for that and that requires a referral from the GP.

[GOOD_GRIEF in reply to PMRpro]

Here in the US, the emergency room doctors can refer a patient to whatever service they believe is needed, even if the personnel/facility/equipment is elsewhere.

[DorsetLady PMRGCAuk volunteer]

Hi,

Your gut instinct is correct - and something is wrong whether it’s PMR or GCA remains to be seen…and a trial of steroids would be a sensible option.

.. and although reading about PMR and/or GCA might be scary- provided you are diagnosed and then treated in a timely matter it’s not that bad.

In case you have either maybe have a read of this- so you know what you need to,look for, and as PMRpro says you may need to,see a Rheumy ismGP isn't sure-

healthunlocked.com/pmrgcauk...

[Pennypip in reply to DorsetLady]

Thanks for information. Will update date post when seen GP tomorrow 🙏

[piglette]

I read about PMR before I was diagnosed and was really worried I might have it. In fact if you are diagnosed with PMR steroids are a wonder drug. Goodness knows where some of the medical profession get their information. Up to around 20% never show increased inflammation levels, which can make the diagnosis more difficult. I went to see a private rheumatologist fir a diagnosis. My GP kept saying it was a virus. A long term virus!!!

[Pennypip in reply to piglette]

Thank you hope doctor is understanding tomorrow. He’s new to me. Will update post after go visit 🙏

[piglette in reply to Pennypip]

Good luck

[SnazzyD]

guidelines say you should treat first ask questions later. I was diagnosed with GCA on the basis of symptoms and quick response to 60mg Pred. My bloods were all within normal limits as was my temporal artery biopsy.

[Grammy80]

You are very brave and your instincts are 'on the money', you definitely need to be checked out by a specialist. As the others have said...you can have normal markers and still in need of treatment and the proper medication.

I was diagnosed back in 2019 and with the help of this forum have managed the disease~! It is so much easier if you can start sooner than months down the road. You are very wise in your thinking and have the support of all here....my best to you💞

[SnazzyD]

My GCA was diagnosed on the basis of symptoms and their magical response to 60mg Pred Including pain and my eyesight that in the end was like looking down a loo roll tube and getting smaller. My bloods were all within normal range and my biopsy 8 days later was negative. My eyes were checked 3 hours later and found to be normal but it wasn’t thorough I’d say. Googling something like GCA with normal ESR/CRP brings up case studies so I wasn’t the first on the planet!

[Lenore58]

Well, based on these testimonies, you’re now well aware that the nurse was flat out wrong! I am another of the 20ish % that had normal inflammatory markers, but I indeed had PMR. The diagnosis is then made through symptoms and quick resolution via prednisone.

[Pollyanna16]

I spoke to my optician yesterday after my annual glocoma eye test about how often he sees GCA symptoms. He showed me how they might recognise it on the optic nerve photo for instance as it turns from red to white. He said opticians would red flag this & send the patient straight up to A&E. Just thought I’d mention it as another way of diagnosis. My best wishes for a quick diagnosis x

[PMRpro Ambassador in reply to Pollyanna16]

While it is a very useful fall-back and we often suggest it, it isn't reliable - you can have GCA that doesn't affect the relevant artery enough to cause the change in appearance. My optician did that - I had a long wait one morning while he dealt with an emergency patient, phoning and writing a letter to the eye department at the local large hospital.