contradictory information!

[charlie444]

New and confused 85 yr old retired female. Very fit until sudden onset of PMR 3 years

ago. immediate relief from pain distress and tiredness with moderate dose of steroids. After a few weeks worrying symptoms of GCA but nothing showing in bloods. I was convinced that my impaired vision, headaches, sore jaw indicated GCA but rhumatologist prescribed visit to optician and paracetamol for tension headaches! New specs and painkillers not having desired relief.

3 years later am still struggling on steroids...dose7 prednosilone......still problems with

failing eyesight, headaches, sore jaw. After eventually asking for biopsy informed that "probable incident of GCA in past" but now quiet ....

.probably contaminated by long period of steroids. Being advised to get steroids down but unhappy with consequences when I try to reduce...get very weak and tired ,sore head and eyes. Still nothing showing in bloods.

Anyone with similar experience? Any advice?

Sincerely Charlie444

. 3 years later am still struggling with eyesight and after insisting on biopsy was told "probable incident of GCA but now quiet" .....trouble is that results now contaminated by 3 years of taking prednosilone . Dosage now 7 Being advised to cut down steroids but still have bad symptoms of tiredness,poor balance, poor

Eyesight,persistent headaches (not migraine) sore jaw. ...feeling fed up!!

[PMRpro Ambassador]

I do know someone with a similar story - PMR, then what really did appear to be GCA but the local rheumy in Kent wouldn't have it. It's a long story - but eventually she saw Prof Dasgupta who said what you have been told, probably was GCA but gone now and just symptom management. Except the only thing that managed the symptoms was a higher dose of pred than they would allow. Eventually she went to Leeds to a different rheumy who was most upset she couldn't get things under control for the patient. Until the patient happened to mention she had night time back pain, at about 1-2am. This is not typical of PMR but it is typical of another rheumatic disorder - ankylosing spondylitis. That was what it turned out to be - and the neck inflammation and problems associated with that had interfered with the blood flow to her head and caused symptoms more typical of GCA although they were unusual. So - despite the symptoms, it wasn't GCA.

I don't think that it is AS you have (though nothing is impossible) - but my suspicion would be that you DO still have GCA but it is affecting cranial arteries other than the temporal artery - which is perfectly possible. Some 20% of GCA patients do not have raised blood markers, and even more when they are on some pred, even a low dose.

Where are you? Is a private second opinion an option?

[SheffieldJane]

I wouldn’t reduce if I felt that bad and there was any chance that some form of Vasculitis was present. I would want to be on a dose that settled my symptoms. This disease lasts around 6 years on average and you really are quite symptomatic. We don’t seem to have the definitive diagnostic tests offered to us like an ultra- sound. I wonder if an MRI would show anything? As you say it is partially controlled by Pred at present. The best case scenario is that you have somehow come through the worst of GCA without massive doses of steroid, but I would be alert to any worsening of symptoms and take enough Pred to relieve the ones I had, for as long as necessary. Second opinion maybe? Where are you?

[Mombeck67]

I'm sorry you are hurting! Have you had any lab work recently? It would be good to see what your inflammation labs show, such as a Sed Rate and CRP. Even on Prednisone, my CRP reads high when I need to increase my Prednisone because the inflammation is high. If you had labs, please share your results is you are comfortable sharing. If no labs were done, your doctor isn't doing his job and should order them! I hope you get some answers.

[PMRpro Ambassador in reply to Mombeck67]

Charlie says twice that "nothing showing in bloods" - hence her problem I suspect.

[Jackoh]

I have no significant blood markers Charlie and yet have cranial GCA and PMR and if I come down too far or too quickly then I have the headaches, ear ache and pain at the back of the skull. It could possibly be that the dose of steoid that you are on is not enough. Maybe seek a second opinion? 3 years seems an eternity when you are suffering with these conditions but in the scheme of things it isn't - for many it can be up to 6 years. I was first diagnosed 3and half years ago and am still on 15 mg.