Update..it’s not GCA!

[BadDancer]

Hi, as requested from my post last week I’m letting you know the outcome.

I had a CRP blood test and Temporal Artery ultrasound scan (done yesterday). Both were thankfully normal. I have been on 40mg for the past week ( up from 4.5 mg) which cured the scalp tenderness in 48 hours (and helped the PMR) but unfortunately the jaw pain on chewing has increased and is now more constant, general and painful. My blurry vision not really improved ( but have now been diagnosed with a moderate cataract). A dental examination and XRay was normal. Still no appetite and have lost 10 lbs in 6 weeks - perhaps unsurprisingly!

My Rheumatologist said it was not worth doing a biopsy in these circumstances and has ruled out GCA. He has told me to now reduce to 5 mg and return in a month.

He has also referred me to a neurologist and prescribed amitriptyline until I see him. Hope it helps the pain and I get a diagnosis. Onwards and upwards…

Thanks for your help and advice. I am of course at least relieved it is not GCA.

[DorsetLady PMRGCAuk volunteer]

hmm.. hope Rheumy is correct, but the jaw claudication is still a matter of concern… please keep us updated ..

[BadDancer in reply to DorsetLady]

Thanks for your advice DL. I confess I was surprised given the improvement in the scalp and the radiologist saying if it was a more minor artery elsewhere then the scan wouldn’t necessarily reveal anything.

But my Rheumy said the increased steroids would have improved the jaw claudication and yet it has got worse and there is now not only pain on chewing but at other times too….

[PMRpro Ambassador]

Like DL - given the webinar I attended this afternoon, I'm not as convinced as your rheumy!

If your symptoms worsen or you have ANY visual symptoms, please go to the ED/A&E.

[BadDancer in reply to PMRpro]

Thanks PMRpro. I will follow your advice and plan to listen to the webinar which sadly clashed with my appointment.

[PMRpro Ambassador in reply to BadDancer]

It's likely to be a hard listen - the sound may not be ideal, but they hope to sort out a transcription.

He may be right about the jaw pain - and I hope he is. But maybe not.

[BadDancer]

Thanks. I much appreciate your help and will proceed with care…

[AmberGamble]

I agree with previous comments - GCA is too serious to entirely disregard based on what you’ve had tested. Although I had very high inflammation markers, an ultrasound revealed nothing. I was told afterwards it was a waste of time given the high dosage of Prednisolone I’d been on for over 2 weeks.

Then an Opthalmologist insisted I had another, weeks after I’d been on Prednisolone. I did question him but to no avail. Surprise, surprise that was negative too! What a waste of NHS resources😣

I’m afraid I’ve learned that unless you are very lucky, you have to been your own advocate for treatment with these diseases. It’s very tough to push when you feel so bewildered but it’s the only way.

If you continue to have concerns, please seek help!

[BadDancer in reply to AmberGamble]

Thank you for your message AmberGamble. I do so agree although I think my rheumy is good My dear husband and wonderful daughter are taking care of me …and .at least I finally got some sleep last night aided by medication. I have retired to bed for the day - my dance class will have to wait!