Have you had Ultrasound scanning as part of PMR diagnosis?

[Polywotsit]

Hello!

I'd love to hear from anyone who has had experience of your rheumatologist using ultrasound to confirm a diagnosis of PMR. This could become a patient story in the new edition of the PMRGCA book. Please write to me (you can do it here in the chat or at [e-mail]) with your story.

What country are you in? How old were you?

How long had you been unwell with PMR before being sent for the US tests?

Can you remember what dose of steroids you were on when the scans were taken?

Were your ESR and CRP counts particularly high? (No worries if you're not sure about this)

How did it feel having the ultrasound scan? Were any parts of it uncomfortable? (some say that it's uncomfortable having your hips scanned).

Did your rheumy share any of the images/results with you?

About 150-200 words would be brilliant! Thanks in anticipation!

Kate

[oscarandchloe]

Hi Kate, I had 4 sessions at Oxford Teaching hospital with students being taught! I'll send you the details later today. Love your book my Bible for 4 years.

[PatB1948]

Hi Kate, I have had PMR for nearly eight years. I have had many flares whilst trying to reduce prednisolone. About a year go, I had a very bad headache on right temple, I was worried that I might have GCA. I got an emergency appointment with GP who sent me along to the eye clinic at Ninewells Hospital. There they checked my eyes and they were fine. They then sent me to see a rheumatologist who did an ultrasound scan on my right temple, part of my skull, my shoulders, neck and upper arms. He said there was no sign of inflammation anywhere in these areas. He said that he did not think that I had PMR or GCA but as I had had an MRI scan a few years ago on my C Spine which showed wear and tear, he said he thought my shoulder pain was coming from that. At that time I think I was on 15mg Pred. The rheumatologist then prescribed Naproxen and said to reduce the Pred slowly to get off them completely. I have stomach problems and cannot take anti-inflammatory medication. I did not know that is what Naproxen is and after taking it for a week, I had a GI bleed which my GP was very concerned about and phoned the hospital. He got advice from them and treated it without me having to go to hospital. The fact I was on blood thinners did not help matters and hospital said to stop taking them for a few days. I have been reducing the Pred slowly and am now at 9mg. I still have neck and shoulder pain but it does not get any worse as I reduce. I take co-codamol for the pain and it seems to work. This makes me think that I don’t have PMR anymore.

I hope this is helpful to you and sorry it’s so long winded.

Pat

[Thelmarina in reply to PatB1948]

The thing that blares out is that you were on Pred, recommended Naproxen by the rheumatologist, with no warning about the possible impact of Naproxen for those on Pred, especially as you’re on a blood thinner! Just a reminder not to give our carers blind trust. It’s worth reading those boring leaflets that come with the drugs even though they are like Terms and Conditions on websites 😂

[piglette in reply to Thelmarina]

Sadly a lot of doctors are really not up to speed on drugs. It is not something that is really taught that well at med school. Also many never really read the information on new drugs. Having worked with the drug industry for many years, doctors’ knowledge of drugs was a standing joke.

[PatB1948]

Kate, With reference to my post, I realised that I had not stated the following information.

I am in Scotland. I was 76 years old when I had Ultrasound scan.

My blood tests show that ESR and CRP have never been high apart from when I was first diagnosed.

Scan was not uncomfortable it was on the upper parts of my body, they did not do my hips.

Pat

[Rugger]

For two years I have been a 'subject' on an Ultrasound training day, so not for the purpose of diagnosis. It was painless, but the only discomfort was when they scanned over my clavicle for the subclavian artery - having very little flesh over the collar bone made it feel as if I would be bruised, but afterwards there was no bruising! The other arteries that were scanned are also more associated with GCA, rather than PMR - the carotids and cranial arteries. Scanning my neck for the carotids was uncomfortable, but not painful.

I would prefer US any day, to being exposed to radiation or a surgical procedure, in the case of TAB.

Looking forward to reading your next edition!

PMR: 2016

GCA-LVV: 2019