Hi - I am rather new to all this and long story short - 2 weeks ago tomorrow I started investigations for suspected GLA. 60 prednisolone. My sister has recently been diagnosed and my brother a couple of years ago. I also have Auto Immune Thyroiditis and my CRP markers have been a little above the range at 5.6 for well over a year. Erythrocytes were measured last week and are well within the normal range. Pred sent my Blood Pressure rocketing and so I was given meds for that. Then I waited and waited hoping for a fast track Biopsy. The date has been set for Friday this week. Another blood test has confirmed CRP back to 2 so the Pred is clearly doing it's job.
My question is having read up what I can - is it really worth doing at this stage it seems it could be too late for it to be a reliable marker? I have tapered down to 30 Pred as I feel it could be somewhat of a false alarm. Not that I am not taking it seriously but I did do quite an amount of physical stuff I am not used to which could account for the headache symptoms. Which weren't all that bad anyway. Would an ultra-sound do the same job without the risks/unpleasant stuff? About three weeks ago I had an ultrasound on my carotid arteries and have been called in for a day appointment for that but no details. I instigated that after a Thermography session indicated there might be a blockage there. I use Thermography as an alternative to mammograms.
Thank you
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Pippah45
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Even though the high dose pred will have reduced any inflammation considerably in the best part of 3 weeks, there are likely to be some residual signs of its presence which the histology should find. If there is then there are far more grounds to continue with the high dose pred. Ideal would have been within a few days of the presumed diagnosis but obviously that wasn't possible - I assume because Easter got in the way.
On the other hand - one question to ask the rheumatology specialist (have you seen one yet?) is whether the result will influence how you are managed. More than half of temporal artery biopsies show no giant cells and there are many reasons for that including the GCA is affecting other arteries but hasn't reached that bit yet so the symptoms and clinical suspicion form a significant part of the diagnosis. If the biopsy is negative - will they rely more on the clinical side? Will they continue the pred? At what sort of dose?
Thank you for the speedy reply. Yes you are correct it was Easter that got in the way. No I haven't seen rheumatology yet. What bothers me is that I have felt a LOT worse - since starting medications. Virtually wiped out over Easter and kind of existing since - where as before the panic button was hit I was about to set off on a touring holiday in my caravan. Obviously plans need to be made - it is just trying to make the right choices!
High dose pred does often make you feel rough - but you have to hold on to the fact that it is protecting your sight which is why it isn't left until after the biopsy is done to start the pred. Without the TAB the rheumatologist will now have very little to go on since the pred relieved the symptoms quickly.
If it were me I would probably have the biopsy done - though I don't really know. It would be interesting to know why you have this appointment for the carotid result - did the scan show inflammation or blockage? I wonder if your GP can access the result.
Hi Pippa, I had the TAB 3 days after diagnosis of GCA and it was negative, not enough of the inflamed bit - I did have an Ultra Sound on the day of diagnosis and it was positive. My Rheumie doesn't seem to do the TABs and relies on US but he has a full service and trains his doctors to do it. It is a specialist service and not all hospitals have the trained staff.
I'm interested in Thermography - would you PM me with details if you can. Thank you.
Hi Telian - Thank you for your reply. I would much rather do Ultrasound and am trying to get my head round how to by pass the Biopsy and get to see a rheumy.
I haven't figured out how to use PM if you could enlighten me. It looks as though you are in the right part of the country to see the same lady I saw. She is the second thermographer I have seen and MUCH more knowledgeable than the previous one - who has disappeared! Results are sent on to a Professor for interpretation but her input was very useful.
Well you managed the PM! Very grateful. Your GP should refer you to see a Rheumie if only to get a correct diagnosis then he/she can manage you. You have a right to be referred. Personally I wouldn’t have the TAB knowing what I know now as long as you can get an US. Where are you? I live in Essex and we have marvellous facilities.
I am right in the sticks of Lincolnshire somewhat remote with Lincoln hospital having been slated widely. I am going to call a halt on the biopsy as soon as I can get hold of the surgery and hope not to blot my copy book any more! I already self treat the hypo thyroidism because levothyroxine feels like poison to me. I have a little private health cover which might get me to a Rheumy. Thank you for the help.
Personally I would not have agreed to having a temporal artery biopsy If I had known what I know now. It is a very invasive procedure & symptoms of GCA are treated as such anyway.
Thank you Janstr now I have to figure out how to stop the train without upsetting the powers that be! My brother also warned against so I think he will be my excuse. :).
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