I am being investigated for suspected GCA been waiting over 4 weeks for TAB is this normal?

[Helliwelli12]

How long does it take to be diagnosed with GC A

[DorsetLady PMRGCAuk volunteer]

That’s a bit like ‘how long is a piece of string ’ question….. but if you have symptoms that indicate you might have GCA you shouldn’t be left in the lurch….and it certainly should be quicker than 4 weeks… a lot can happen in that time.

What symptoms do you have? Are you on Pred ? And where are you?

[Helliwelli12 in reply to DorsetLady]

I have abnormal blood results, still gave occasional twinges in my head. Just tapered down to 20 mg of prednisolone. It's hard to know if the prednisolone is making me feel spaced out or the condition. I also have fever, reduced appetite and fatigue. I am in Leicester and going to chase result again tomorrow

[DorsetLady PMRGCAuk volunteer in reply to Helliwelli12]

Please do, but it sounds very GCAish to me..

If you’ve reduced to 20mg does that mean you started on 40mg -and how long ago? If only 4weeks then I’d say taper is much too quick if GCA

Just seen your reply to PMRpro - and that you’ve had the TAB - your original question didn’t make that clear.. but still chase result

[Helliwelli12 in reply to DorsetLady]

I started on 40 mg Nov 3rd then a month later tapered to 30 mg so now 20 I shall discuss dosage tomorrow but think I've followed instructions correctly

[DorsetLady PMRGCAuk volunteer in reply to Helliwelli12]

Not disputing that you have followed instructions correctly -but in my view as someone who had GCA the instructions are too quick…

[PMRpro Ambassador]

Hi and welcome! It would be really helpful to have far more info about your symptoms and whether you are on prednisolone to be able to help you. What country you live in is also fairly critical.

For fairly obvious reasons there is a waiting list in most hospitals to have a biopsy done - but how long you wait very much depends on the hospital. Some rheumatology departments have a set-up for an ultrasound to be done, others have to rely on a biopsy but it is important that the biopsy is done quickly if the patient is started on high dose pred because once you are on pred, the inflammation should resolve very quickly and so the biopsy may not show anything at all if there is a considerable delay. The biopsy is often negative anyway - not because the patient doesn't have GCA but because they didn't find the giant cells they were looking for and there is a range of reasons for that. If you are on high dose pred - then 4 weeks if too long for a reliable biopsy, insofar as it is reliable anyway.

The diagnosis is really a clinical one - on the basis of signs and symptoms. The biopsy is really icing on the cake but when it is positive it IS 100% certainty.

[Helliwelli12 in reply to PMRpro]

I had an ultrasound done quickly which was non conclusive and a biopsy within two weeks if starting prednisolone just waiting for result frustrating. Going to see if GP can chase up result tomorrow

[PMRpro Ambassador in reply to Helliwelli12]

Oh right - so you have HAD the biopsy, It can take a couple of weeks for the biopsy to be reported unless it was requested as an emergency. Were you told to cut the dose from 40mg to 20mg by the rheumatologists? That is a massive change in dose - if your symptoms return don't hesitate to get medical advice immediately because if it IS GCA you are likely to need more than 20mg.

[SnazzyD]

I was diagnosed within 30 minutes and started on 60mg Pred based on symptoms and the fact that the Pred helped within a few of hours. The biopsy was done 8 days later and even though it was negative I was still treated as GCA because the risk of false negative is too great to rely on it. Depending on the dose, steroids will reduce the giant cells too.

What dose did you start on and why were you started on it? How long have you been on steroids for?

[Helliwelli12 in reply to SnazzyD]

I was started on 40 mg Nov 3rd , then reduced to 30 mg for 2 weeks, so now just changed to 20 mg. This was as a precaution for suspected GCA. I have been unable to work not sure if the prednisolone is making me spaced out dizzy or if its the condition

[SnazzyD in reply to Helliwelli12]

Pred can make one feel quite odd at these doses. My head felt wafty, buzzy, foggy and yet racing at the same time. My eyesight focussing was always changing which didn’t help the spaced out feeling. These symptoms started with the Pred for me. As the dose drops, so did these feelings, but that was well below 20mg.

[KASHMIRI1 in reply to SnazzyD]

This was exactly my experience Snazzy in the May of 2020 following a blood test. my GP was almost frantic to get me started on the 60mg dose.

[DogAgilityObsessed]

You’ve got good advice from others already but just to say my TAB was done Friday 8/12 (at Exeter) and the rheumatologist rang with results on Wednesday 13/12. I’d been on high dose pred for one week by the time the TAB was done. I think I’d want to chase for the results if I was you. I felt so much in limbo while waiting so I sympathise with you.

[random901]

Hi Helliwelli12! Fortunately for me my GP put me on 30mg pred immediately as she suspected GCA. Was seen by Rheumatology within 2 weeks and put on 40 mg. Swiftly followed by biopsy which positively confirmed GCA. I believe I only waited another 2 weeks to receive the full written report. It was the Rheum dept who pointed out that my blood tests had been abnormal for 10 years! So now I chase up and query things more.