G C A/ Temporal artery biopsy

[Oscardoggy]

Good morning all,I was diagnosed with RA, PMR, and ILD in January 2021 and have had 5 bouts of pneumonia requiring hospital treatment since then, the last one in April of this year.

I am taking 7mgs prednisolone and using DL's DSNS method.

Just to add to my misery I have recently had symptoms of GCA. My rheumy has ordered an urgent TA biopsy and increased the pred to 60mgs. Depeding on the results of the biopsy, how quickly can I reduce from 60mgs and how painful/unpleasant is the biopsy procedure.

Thank you

[SnazzyD]

Sounds like you have had a bit of a run of it! You have a local anaesthetic which stings for the first few seconds. After that people feel nothing at all or sometimes a bit of discomfort and some tugging. I felt uncomfortable at times at the back of my skull which the surgeon was surprised at. I’ve had a few procedures in my time and this isn’t one that gets anywhere near the top 10 of painful ones.

I don’t know if they said but this test can give false negatives, especially if you are already on a decent dose of Pred. They don’t have many arteries to choose from for this so this limited choice can mean they don’t get an artery piece that has the giant cells in it. The Giant cells aren’t evenly distributed throughout. It is vital that the doc removes a piece that is at least 1cm long.

So, a positive result is very reliable but a negative one doesn’t rule GCA out 100%. Mine was negative after 8 days on 60mg but they treated me anyway because my symptoms that also so well responded well to Pred. I was then reduced to 40mg because my sight was ok and stayed there for 6 weeks. The standard protocol was then prescribed. Every case is different and this isn’t your first go so they might say differently. You might qualify for Actemra now.

[Oscardoggy in reply to SnazzyD]

Thank you for your quick response. My rheumy discussed Actemra but the MDT deemed it insuitable because of my lung problems. Thanks for the useful info.

[DorsetLady PMRGCAuk volunteer]

Sorry to hear you have GCA symptoms…. and it’s impossible to say how quickly you can reduce Pred. It depends on many things, most importantly how serious your symptoms are, and what your Rheumy considers the appropriate course.

Cannot give info on TAB, my GCA was so obvious it wasn’t required, but for most people it’s uncomfortable more than painful.

Just be aware, a negative result isn’t always 100% accurate, especially if you are already on a high dose of Pred or that particular part of artery isn’t affected, whereas a positive result is just that - positive.

Good luck…

[Oscardoggy in reply to DorsetLady]

Thank you for your rapid response and very useful information. I have been yo-yoing with pred for a long time and was very reluctant to increase to 60mgs. But I suppose I have no choice but to ride the storm and start all over again. Thanks again.

[DorsetLady PMRGCAuk volunteer in reply to Oscardoggy]

I can understand that - but you have to say to yourself - if this saves my sight then I can do it.

But you could do without it after all you’ve been through 🌸

[PMRpro Ambassador]

Sorry to hear that on top of all the rest - you do have to feel it is really unfair,

[Sharitone]

My rheumy said the norm, barring flares, was 4 weeks each on 60mg, 50mg, 40mg, 30mg, 25mg, 20mg, then more slowly.

[Carrollee]

Hi. I felt no pain. Everyone was very friendly and explained each step of the process. Was given food and a cuppa afterwards. I was encouraged to take paracetamol for any pain I might experience after the anaesthetic wore off but I didn’t experience any at all so didn’t take any. All the very best 🤗

[Oscardoggy in reply to Carrollee]

Thank you

[kalgoorlie]

When I had my TAB I laid down on my side in a chair a bit like a dentist's chair. I was made to feel very comfortable and they talked me through the whole thing. They were really nice to me the whole time. The anaesthetic injections will sting but once you're past that you won't feel a thing except for a bit of tugging, which is not painful at all. As with all these type of things, you just have to go with the flow, don't worry, just let them get on with it and treat yourself to something afterwards.

They give you some ointment to put on it for the next few days and you mustn't wash your hair for a week so make sure you wash it before the procedure.

I started on 40mg in feb this year, am now on 10mg in July.

Hope this helps.

[Oscardoggy in reply to kalgoorlie]

Yes, thank you.