PMR/GCA

[Lollybygolly]

Such a relief: doctor called and my ESR well below average as were other inflammation markers. Panic over, back to 5mgs a day and hopefully a lull in headaches and eye pain. Very relieved. Thank you everyone for the super support snd guidance. Have a good day!

[SheffieldJane]

Needless to say, continue to be mindful of potential GCA symptoms. 🌻

[PMRpro Ambassador]

Please don't take that as 100% certainty - Snazzy has a story about normal blood markers and GCA. Up to 1 in 5 GCA patients have normal range markers.

[Lollybygolly in reply to PMRpro]

Thank you. I was so relieved I forgot to ask him what about the symptoms...the eye pain and headaches and sore artery by my ear...

[PMRpro Ambassador in reply to Lollybygolly]

Do you still have them? Are they the same?

[Lollybygolly in reply to PMRpro]

Not so much today: I had 60mgs of pred yesterday at 4pm so I have very small headache and eye is heavy but not too bad.

[PMRpro Ambassador in reply to Lollybygolly]

If it gets worse again - try 111 or A&E and tell them the whole story. And if you have ANY visual symptoms at all - straight to A&E.

[Lollybygolly in reply to PMRpro]

Thank you so much. After my initial relief I must admit I’m a little confused as the same applies as before.. worsening headaches, brow, temple snd ear pain plus night sweats and disturbed vision mostly at night also. My eye is still cloudy/unfocused even with new 3x teading glasses

[PMRpro Ambassador in reply to Lollybygolly]

A&E please ...

[Lollybygolly in reply to PMRpro]

Hi - following 60mgs Pred:felt better till today when symptoms returned so took myself off to A&E. she was baffled but did full check up and was about to send me away when I asked her if I was definitely not going to lose my sight. She called registrar snd they decided I should get back on 60mgPred till a biopsy. She was miffed that I stuck to my guns, blood pressure through the roof, despite my usual 90/55-60. I’m home and exhausted but feel I’ve done the right thing asking for the GCA biopsy. Will feel foolish if it’s not that now!

[PMRpro Ambassador in reply to Lollybygolly]

When might a biopsy be done? Did they say?

[Lollybygolly in reply to PMRpro]

Hopefully this week. I don’t want to get stuck on high dose Prednisolone.. any ideas if I can come off quickly if it’s just a few days?

[PMRpro Ambassador in reply to Lollybygolly]

Just bear in mind that a negative biopsy does NOT mean it isn't GCA, it means they didn't find what they were looking for. There are several reasons for that including that the GCA doesn't affect arteries evenly, it forms what are called skip lesions and they can be easy to miss, or that the GCA hasn't got to that section of artery. Plus even a week of high dose pred reduces the chances of seeing the inflammation in the biopsy. The symptoms are also a very important bit of evidence,

And yes, up to about 10-14 days you can reduce the dose very quickly, it may be a bit uncomfortable but there are no risks with it,

[Lollybygolly in reply to PMRpro]

Thank you! That’s good to know!

[Lollybygolly in reply to PMRpro]

Lordy what a messa to make-a!Thurs: doc put me on 60pred

Friday: bloods ok take 5mg

Saturday A&E take 60mg

Sunday took 30mg

Mon doc says 5mg

Tuesday: collapse - into A&E with grazes from shingle and socking headache, nausea, fainting. So now my Rhemy phones as I’m about to have CT scan telling me to go for scan at his hospital, prior to biopsy.

I’m still on 5mgs. Feels like I’m in an altered reality

[Lollybygolly in reply to Lollybygolly]

CT scan showed nothing sinister but that was my brain and the houseman said I’d need a whatchemajig scan cos that shows soft tissue and arteries

[PMRpro Ambassador in reply to Lollybygolly]

Just CT or a PET-CT? I don't think plain CT for brain is much use - but it would show large vessel vasculitis in the trunk.

[Lollybygolly in reply to PMRpro]

It was CT. I guess they were checking for tumour: clear. I’m pretty sure if I hadn’t fainted I would have ended up having my ultrasound soon anyway.

[HeronNS in reply to Lollybygolly]

What dose of pred are you on today?

[Lollybygolly in reply to HeronNS]

5mgs. Feels wrong but I’m following the latest order.

[HeronNS in reply to Lollybygolly]

Look after yourself, lots of rest. 👸Just looked at your profile. "If I'd known I'd live this long I'd have taken better care of myself." Probably wouldn't have made any difference! Look after yourself now. 😉

[Lollybygolly in reply to HeronNS]

I like to joke but having 5 younger brothers I guess I didn’t ever treat myself like a girl, more like a work horse. Still love to be (over) active when I can get away with it.

[SnazzyD in reply to Lollybygolly]

Well done you for putting the question of the eyesight out there. I think it brings things closer to home if questions are a bit more blunt to break through the cloud of hoping for the best and a diagnostic easier life. Re the biopsy, bear in mind a negative biopsy doesn’t mean you’re necessarily in the clear. This is because the giant cells can be in other places to the particular piece of artery taken out. They are sometimes spread irregularly, called skip lesions. The surgeon needs to get out at least 1cm length. Lastly, as soon as you are on high dose steroids it can change the cells. Opinion does seem to vary as to when it is too late to be useful and I’ve read from 4 days to six weeks as they say in my hospital. For this reason a negative result is normally ignored if the symptom history is compelling and there was a good response to a high enough dose of Pred. However, a positive result is highly indicative of GCA and everyone breathes a sigh of relief because the patient has been put on high dose steroids for definitely the right reason. So don’t hang onto the biopsy as the bringer of all answers.

My biopsy was negative after 8 days of mostly 60mg and my blood tests pre-diagnosis were all in normal range (thought not for me personally). I was still treated as GCA because of my symptoms and I had a great response to 60mg within hours. The tests made no difference to my management because of the potential risk to my sight.