Good morning everyone, I have a few questions. . This is the first one though and it will all become clear once I post another later. .
Can as many people as possible tell me how their GCA was " confirmed"
I noticed a comment from Celtic that hers was confirmed in the end by the ophthalmologist . .
How many of you actually had a POSITIVE from a biopsy and how long had you been on Pred at the time if biopsy.
I'm interested to know how many actually get a firm diagnosis. ?
Thank you Lisa x
Lisa, no my GCA wasn't confirmed by an ophthalmologist. Although I had the classic symptoms (and a previous year with what I later learned had been undiagnosed, therefore untreated, Polymyalgia) three GPs failed to diagnose me when all the classic symptoms of GCA arrived on the scene (head/jaw/eye pain, facial swelling, blurred vision, nausea, vomiting and high ESR and CRP inflammatory markers). GCA was, in fact, suggested by a wonderful pharmacist who was aware of my prevous year's experience of being bedbound for several months with a then undiagnosed illness. Finally a fourth GP considered GCA, started me on 40mg of steroids with urgent referral to a rheumatologist who confirmed the diagnosis of both GCA and PMR, simply from the classic symptoms. The total resolution of most of the GCA symptoms within hours felt like nothing short of a miracle at the time.
Biopsy remains the most common test carried out on suspected GCA sufferers but it isn't 100% reliable in that the large cells they are looking for can escape the tiny portion of artery removed. Because of the risk to eyesight, steroid treatment for suspected GCA should not be held up whilst waiting for a biopsy appointment, although the biopsy should be carried out within a few weeks of the starting dose - any longer and it is likely that any enlarged cells will have resolved with the treatment.
Temporal artery ultrasound is a more recent test but is available at very few centres, with Bristol and Southend being two such areas.
TAUS is also available at Leeds I think - but there is one consultant rheumatologist who can do it! I was going to say it will be available at any of the centres which participated in the study, but of course the person who did it for the study may have moved to another hospital.
Morning Lisa, my biopsy was 3weeks after starting pred result was inconclusive saying that the consultant who is our area goto guy . I was very lucky never went through a fraction of problems the majority have Saturday morning called shropdoc sent to out of hours surgery for scrip so 3 hours from call to treatment.
Yes I know all about the biopsy not being conclusive which is why I'm going to decline the offer of a biopsy on Friday. .
Brief history again for you. .
I started with occipital headache and ear ache which the right ear constantly bubbled and I had sore glands in the neck, no jaw pain, and no temparal headache, thei was back in oct, I eventually had a blood test on the 5th Nov which showed up CRP of 113 I was started on 40mg of Pred within one week the CRP was 11! Saw Rheumy and she said come straight off Pred she didn't think it was GCA afterall and it was as virus maybe . . Within 4 days my CRP was again 86 had a phone a call from Rheumy saying get back on Pred you do have the symptoms!! Take 40mg for 2 weeks, 30mg for 2 weeks the 20mg for 2 weeks. . Heard nothing for her since . . Classic reduction . . . Not. . By the way I hVe followed your advice here every step of the way, taken no notice of them
So my situation now is . . . I'm now on 35mg and cutting down to 30 this week, my CRP levels have stabilised at 8 . . . Nothing else is right with my blood. . . That's another story I will post all that in another thread . .as I need you guys to do some detective work for me. .
I have now been on Pred since the 5th Nov with just 4 days gap, if I go ahead with the biopsy I feel it's going to change nothing. . .
Negative. ... They will keep me on Pred and reduce it . .. Just as I am. .
Positive. . . . Nothing changes. . .
The changes of getting one of these "giant cells" is remote anyway . . Hoping that one is passing just as they cut into my artery.
At my pre op appt the nurse said she could understand my concerns and that she would get the Rheumy to call me to discuss options . . She even said about stopping Pred for a few days before hand. . Have to say I'm not happy with that option now, that would mess things up in all areas. . My poor body . .
And A and E the opthalmogist said to me unfortunately it was a "box" that needs ticking . . . I'm sorry that's not good enough for me
My GP (who shows little interest) in my case, can't even get an appt to see her for more Pred. . . Said she can understand that is seems pointless doing a biopsy after the Pred has got into my system and reducing inflammation. .
I'm feeling quite angry that no one has bothered to contact me as promised I know they are busy people and I'm not the only poorly person and all my reassurance has come from you lovely people who have been there got the T Shirt. . .
So I'm off to phone the hospital to say I won't be coming in. . . X x
Good for you Lisa630!
The question is if your biopsy was negative or positive would it change your treatment, if the answer is no then there is no point in doing it.
You can always quote the guidelines to them ( I think they say no point if been on pred for more that 2 weeks).
A patient with an informed opinion, they won't know what hit them.
Thank you Keyes
This is my point exactly, nothing is going to change except putting extra strain on my artery . . Not to mention the stress of being cut about !
It's stressing me out and that in itself is not good. ..
They will hate a patient like me I know but that's not my problem it's about time we stood up and did what's right for us. . .
If the biopsy were to be more "conclusive" I won't have it like a shot. .
But it's a bit washy washy. . . . Really isn't it . . X x x
Totally wishy washy, unfortunately it's the best they have.
Prof Dsagupta in Southend was trialling a same day or next day approach to biopsies to try and stop the " oh yes she does, oh no she doesn't " uncertainty around diagnosis.
If they could only find a specific bio marker for GCA then life would be a little easier! I suspect that many people with a negative biopsy result, under similar circumstances, have viewed it as a big stick the medical profession has used to beat them with.
Good luck with it all and your ongoing treatment.
I didn't have a biopsy as I was diagnosed with GCA 5 years after the initial PMR diagnosis. However I will stress that I haven't got TA - no temporal artery involvement, it affects the medium arteries instead.
I was diagnosed on clinical signs and symptoms and really the diagnosis came as no surprise to me.
That's very interesting Polkadotcom.
I don't have any and never had any pain that directly relates to GCA
Only ever had headache at back of head, right ear bubbly and cracking constantly and still does! And sore glands down the neck not anywhere near the jaw, no jaw pain. But I did have very high CRP 113 which went down to 8 in a wk on Pred.
Having no pain in temparal area made me question the biopsy even more.
I phoned the hospital to explain my concerns and wanted to speak to someone. .ie Rheumy . . Nothing I've heard nothing. .
The giant cells aren't "passing by" as such - they grow in the wall of the artery. I don't see the nurses point about stopping the pred before the biopsy though - that won't make a lot of difference.
Like polkadotcom I also almost certainly have "GCA" - and it was a rheumy who said it a couple of years into pred on the basis of symptoms. But what a lot of doctors, even specialists, seem unaware of is that you can have GCA without it affecting the temporal artery, which is the only one they look at. No patient who has it extracranially is likely to have a positive biopsy. GCA is also classified as a Large Vessel Vasculitis (LVV) and that can happen without any giant cells, it is a different sort of inflammation which looks different at biopsy - but the same applies: it may be affecting arteries in the chest, arms, abdomen and legs but they don't look at those.
I still believe cases should be referred to a vasculitis specialist, not a rheumy.
Hi Lisa - I was diagnosed with GCA abaout two and a half years ago, and immediately put on 80mg steroids.
I had been attending a routine check-up of my rheumatoid arthritis, and told my specialist nurse that I'd been feeling very unwell, with bad pain in my left temple, a stiff jaw and awful headaches. Also pain in my calves, I think. She rushed next door to the consultant, who gave me a thorough examination and told me he thought I had GCA, and there was no point in doing the biopsy as it would already be affected by the steroids I was starting. I was cross about that at the time, but think it was probably a good thing. ceratinly the pains disappeared miraculously once on the pred. Of course, it's been a long road trying to reduce them - I'm currently down to 12 and a half mg. - and a way to go yet, I think.
I do so sympathise with your predicament. Stick to your guns....
venezia1
Hello Lisa, my PMR/GSA started with pains in my upper arms and head, doctor injected me with hydrocortisone in my shoulder, but that did nothing for me, and my sight in my left eye had become blurred, I went back to the doctors, and saw a student doctor, who immediately said she knew what it was, it's PMR, after talking to a senior doctor they put me on steroids, and sent me to the hospital, where I had many tests, eye tests, blood tests, and saw the Rheumatologist I spent most of the day at the hospital going from one department to another, then it was confirmed it was PMR/GSA and have now been on steroids for over a year, slowly reducing from 60mg am now on 6mg, but that sometimes goes up during a flare up, I have also had a DVT in last 6 months, which the doctor said could have been caused by the steroids, then was injecting myself with clexane then put on warfarin tablets, I had a temperal biopsey which came back negative,
Hope this helps you,,,Jan
Mine was positive after emergency admission to BEH with one sight loss. It showed the Giant Cell they claimed but you would need to be an expert to be sure I hear! Two years on now in Club Zero for us ex-pred users and driving again and almost pain free, but maybe its just old age (78)? Good luck with your survey and please post the result!
raymck
Hi GCA and polymyalgia 
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