Just been diagnosed with GCA - some help please - PMRGCAuk

PMRGCAuk
10,985 members19,991 posts

Just been diagnosed with GCA - some help please

fairy100
fairy100

I have had PMR since November 2018 and had been on 5mg Pred for three weeks when the telltale pains in shoulder and neck returned. Was deciding whether to bother GP when last Saturday had a visual disturbance followed by what I thought was a migraine but it was only painful on the left hand side of my face. Sunday I just felt shattered but had pain in my left jaw joint. Monday and the pain the jaw was still there and the headache and then I was getting visual disturbances every 10 mins or so. I suspected GCA and immediately telephoned GP who confirmed and sent me down to our local A&E. Long couple of days short, I have had GCA confirmed just on symptoms, tenderness on temples and 60mg of Pred I was described on Monday having reduced symptoms by half. Thankfully no damage to eyes. I have been given 60mg Pred for 2 weeks and then 40mg plus stomach and bone protecting tablets. My blood inflammation indicators do not show any rise but I understand that can happen.

There is talk of me having a temporal artery biopsy which from what was explained to me yesterday does not seem to add anything that outweighs the cons of what can go wrong also because of the current situation it goes on the emergency op list which to me should be for more life threatening traumas etc. I understand that there is now an alternative scan and indeed the rhuemy yesterday was talking about a whole body scan to see if any other damage had been done. What have other people experienced re biopsy v scan on the NHS?

Sorry a couple of more questions for you lovely people.

How long were you on high does of pred for GCA?

Does GCA come back? or is it simply a complication of PMR which goes as PMR burns out?

As the days go on I may have more but do not want to bombard them with you now.

Thanks.

19 Replies
oldestnewest

Just a couple of swift answers, a request and a question.

Dorset Lady will be along soon.

1) It is too late for a biopsy, they do not work after 5 days on high doses of pred.

2) A scan - if the Rheumy suggest a whole body scan this is fine, but if the waiting list is going to be a long one, ask him about an Ultrasound, in case they have a machine and a trained operator (Tabul study refers).

3) What sort of bone protection - is it AA?

4) Please update your profile and add UK. Yes, I know from your use of GP that you are in UK, but where is also helpful.

PS: I have sent you a PM.

Passion4cars
Passion4cars
in reply to jinasc

Sorry to jump in but in reply to your biopsy answer.

My dad had his biopsy a little over a month after starting on 60mg and 3 transfusions. And his results came back diagnosed that he had GCA

Things are a little different at moment with operation lists due to Covid. As I presented with classic GCA symptoms that have responded so well on Pred. , the doctors consider I have GCA even though the scan was inconclusive. To have a biopsy would mean bumping someone else off the emergency op list, something my conscious will not let me do.

PMRpro
PMRproModerator
in reply to Passion4cars

He was very lucky - the TAB is only postive in about 40% of cases even when done in a timely manner. Add pred for more than a couple of weeks and every few days reduces the likelihood of a positive by 10%.

I say lucky because no-one can tell him it wasn't GCA.

DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi,

Sorry about GCA, but good that sight is okay - that’s the main thing.

jinasc has made comments I would have, but just another couple of points -

please check if AA necessary - DEXA scan - although that may not be easy at moment- unless you know your scores.

My initial regime as follows - slightly different circumstances - 80mg - 2 weeks

60mg - 8 weeks

55mg - 2 weeks

50mg - 3 weeks

40mg - 2 weeks

30mg - 3 weeks

25mg - 4 weeks

20mg - 5 weeks

17.5mg - 4 weeks

15mg - 6 weeks (Xmas period)

GCA rarely returns, and although it’s associated with PMR - it’s a separate illness rather than a complication. Some patients have both, some have one or the other. Sure jinasc will have covered that.

fairy100
fairy100
in reply to DorsetLady

Hi

My Drex scan back in January 2019 showed that I was at the upper end of bone density. I have been give AA just as a precaution for one month at moment.

Hidden
HiddenModerator
in reply to fairy100

What drs call upper end and the reality of actually needing AA is often very different. I hope you feel better soon. 🌻

What Your T-score Means. According to the World Health Organization (WHO):

A T-score of -1.0 or above is normal bone density. Examples are 0.9, 0 and -0.9.

A T-score between -1.0 and -2.5 means you have low bone density or osteopenia. Examples are T-scores of -1.1, -1.6 and -2.4.

Up to here I wouldn't take AA...below..I probably would but I would have a go at diet and exercise approach at less severe end.

A T-score of -2.5 or below is a diagnosis of osteoporosis. Examples are T-scores of -2.6, -3.3 and -3.9.

My whole body MRI PET scan failed to detect Giant Cell Arteritis. However, the specialised Scan on my temporal Arteries did detect large cells in the peripheral arteries ( arm pit) and I was diagnosed with GCA shortly thereafter. I was put on 40 mgs of Prednisalone ( not quite mopped up all the pain) and am awaiting blood test results in case they indicate that I require more Pred. I am not expecting much if anything to show up after 3 weeks at these doses. I am hoping to decrease by 5 mgs after one more week. I will play my reductions by ear. I have not experienced visual disturbance or jaw claudication.

Welcome to the site fairy100. The combined knowledge and experience on here helps so much.

PMRpro
PMRproModerator

A scan is not just a scan. The option that supplants the biopsy for looking for GCA in the temporal artery or brachial artery (in your arm pit) is duplex ultrasound and not yet available everywhere for the temporal artery. It is also not very sensitive in very early GCA.

The whole body scan being mentioned is a PET-CT where you are given an injection of radioactive-labelled glucose into a vein and then they do a special form of CT scan of the whole body to see if any areas have taken up more than others. If other arteries are involved they will show up on the scan image. I'm not sure how valuable it would be with you on such high doses of pred unless you can have it in the next few days. I had one in early March and reduced my dose from 12mg down to 7mg by the time it was done in the hope that would be enough - even 10mg of pred is felt to affect the result. There is usually a wait time - PET-CT is primarily used to diagnose cancer and obviously cancer patients get priority. But it does seem to be a very good option for GCA diagnosis and does show clearly whether what you have is "just" cranial GCA (only in the head) or more widespread large vessel vasculitis, LVV - same thing but they haven't seen the giant cells that give the disorder its name.

fairy100
fairy100
in reply to PMRpro

I have a PET scan next Wednesday. Fingers crossed.

Sorry about the GCA and you’ve had answers I would give and more - you do seem organised with all the scans etc.

Best wishes.

fairy100
fairy100
in reply to Telian

Thank you. It is the lovely Rheumatology Dept not forgetting Victoria in Opthamology at the Royal Free I have to thank for the prompt diagnosis following a quick call to my GP who sent me to A&E when she agreed with what I thought. I shall clapping extra hard tonight at 8pm.

Telian
Telian
in reply to fairy100

It is all about awareness of the illness as not everyone is as on the ball as you experienced.

I too had a wonderful GP at the time who knew about GCA and fast tracked me to Rheumie and my sight was restored.

I get emotional each week we do the clapping for the NHS. We’ll never be able to repay them enough will we....

fairy100
fairy100
in reply to Telian

No, when there is an emergency it is comforting to know the NHS is there for us no matter how much it costs.

TGerard
TGerard
in reply to fairy100

Like Fairy 100 I am under Royal Free. Having got used to PMR and pred over a 12 month period I went to doc to be checked for possible GCA. She arranged for me to be seen at Barnet Hospital next day. They decided I probably didn't have GCA but to come back if I was concerned. I did that two months later after having some eye disturbance and was given a thorough check - probable GCA; report to ophthalmology at Royal Free next day. 5 hours of checks there (eyes OK) ended with a session with rheumatologist - 60mg pred for 2 weeks; 40mg for 2 weeks then down to 20mg for 6 weeks, then lowering by 2.5mg per month. Temporal artery biopsy at Royal Free 5 days after the first visit and full body scan within two weeks of that. GCA confirmed but no other vasculitis.

With the high dose of pred I realised that various little niggly aches and pains that I had put down to old age (71 now) had evaporated! Now down to 12.5mg pred and feeling fine still, getting out to walk 10 miles with no problem.

fairy100
fairy100
in reply to TGerard

Nice to hear from you. Like you I was putting down my pains in my neck and shoulder down to osteoarthritis. I now know they weren't. I was offered a biopsy but voiced my concern that it would be at the expense of someone else on the emergency operating list which is how things are done at moment. I felt this was not right and the body scan was then mentioned as a possibility it was going to be the Consultant's decision. I have to admit I was quite shocked when Nuclear Medicine called with the appointment for the scan. Rheumatology and Ophthalmology admit they are not busy at the moment so I count myself lucky. This might not have been the case if things were "normal".

Your progress is an inspiration to me, as you can imagine I feel that I have gone back to the beginning and then some and there is a long road ahead.

PMRpro
PMRproModerator
in reply to TGerard

Does the Royal Free have a fast-track GCA set-up? Or are they just good? Someone was looking for a good GCA option in London.

fairy100
fairy100
in reply to PMRpro

Not that I am aware. I went to Barnet A&E the night before as GP had advised me to and was told the next morning to report to Royal Free A&E where I was sent to Ophthalmology and then when eyes were clear referred to Rheumatology. It appeared that the Royal Free A&E did know a protocol once they looked at what Barnet A&E had put on system.

TGerard
TGerard
in reply to fairy100

I should have said at the end of my earlier post that I have been very impressed with Royal Free. Rheumy even phoned me out of the blue after my early April appointment was cancelled because of Covid, just to see how I was doing.

It might be helpful for some if I go back to my PMR experience. I felt the onset just 5 days after getting back from a mountain walking trip to the Pyrenees - long walks with plenty of ascent, including reaching a summit over 3,000m above sea level. I went straight to my osteopath with terrible neck pain. She very soon suggested it was PMR and told me to go to my doc and ask for a blood test. It took 4 weeks to be put on pred (15mg/day), by which time I was really struggling - hobbling and in pain. Pred started to make a difference straight away but it took about five weeks for me to feel that I was back in reasonable shape (the old "normal" referred to in some recent posts?). I then risked going to the Lakes to try some hill walking and found I had really got my form back! A couple of 10 milers with around 3,000 feet (nearly 1,000m) of ascent. Felt absolutely brilliant. Tapering was OK till getting down to 7mg after 11 months, then a flare-up. Doc said go back up 1mg - not enough, so I struggled for a few weeks before GCA came into the equation. Again it was osteopath who suggested it might be GCA! She has to be worth every penny of her fees!

You may also like...