How many here have positive temporal biopsies?
Posted , 8 users are following.
I have been wondering.... I had bilateral temporal artery biopsies a few weeks ago, which were negative. My St. Louis doctor still thinks that I have GCA. I am currently at the Mayo clinic in Minnesota getting a second opinion. The rheumatologist I saw here today told me that the sudden onset of symptoms I came down with in July are not at all indicative of GCA and he is checking more things.
Has anyone on this list had a negative temporal artery biopsy but whose doctor still diagnosed you with GCA? Based on my symptoms, my St. Louis Rheumy still put me on 60 mg. Prednisone to alleviate symptoms. I've been on this dose for almost three weeks and a Sed Rate taken today came back normal (because of being on Prednisone).
This is very frustrating because I seem to have all the symptoms and yet I am getting mixed messages.
One more thing: I have had persistent, very tender scalp pain on the top of my head which also includes sores which bleed and are scabbing over. The scalp has been like this since before I was on the Prednisone. Tender scalp is one of the symptoms of GCA, so I think I probably do have it. Any thoughts here?
0 likes, 11 replies
kathy61958 pam48607
Posted
Oh my stars! I am so sorry you're getting such mixed messages. I would definitely stay on the higher dose of Prednisone until it is completely sorted out. Isn't it frustrating when the dang doctors can't even agree?
Please keep me updated on your progress??🙏🏻
stanley36717 pam48607
Posted
I had a temporal artery biopsy that was negative and my pred dose was reduced. A few weeks later I lost some vision in my left eye. The eye Dr said I should have had another biopsy on the other side before reducing dosage. I understand that around 35% are false negatives. Anyway as soon as that damage was done to optic nervy they increased my dosage to 100mg per day for a week and then brought it back down. My sep rate was normal at the time because I was taking 10mg. The vision never returned and I'm on 4mg now. This all happened a couple of years ago.
Reeceregan pam48607
Posted
Hi Pam,
It is very possible to have a negative biopsy result and still have GCA. And if you dr suspects GCA then go with it because it's not worth the risk. I was diagnosed with PMR in May this year by my GP, who luckily is very aware of this disease given he has Parkinson's and his daughter has Lupus. ( These are in the same autoimmune family as PMR and GCA as you probably know). He must have been suspicious of me having GCA as well after my answers as he started me on 50mg prednisone immediately as we waited for the results of the blood tests coming back the next day. I had extremely high inflammation rate and first available rheumatologist appointment was made (6 weeks later. 😩
. Once I saw the rheumy he was also positive I had GCA, and immediately organised eye specialist and vascular surgeon and the temporal biopsy was done the next day. Problem was I'd been On 50mg pred for 6 weeks by the time I had the biopsy so he warned me that although he hoped for something to show up he was well aware that it was highly likely it would come back negative. It did, but he is confident I have GCA and is treating me as GCA positive with PMR as well. A month ago the rheumatologist started to reduce my dose in stages which I've struggled with but stuck to. Tomorrow I have another drop, from 25 which I'm on now to 20, so we'll see how I go. For the record, my GCA symptoms were the permanent headache which I hadn't experienced before, droopy eyelid, blurred vision, intermittent loss off periferal vision, a silver streak in my eye when looking to the left, tender scalp, weight loss, fever..the only symptom I didn't have was the jaw pain. Then there was the PMR symptoms, the horrendous pain and immobility. All I can say is bless the GP, if he hadn't hit me with the large starting dose I'd hate to think what damage may have been done.
Anhaga Reeceregan
Posted
If your symptoms worsen at the lowering dose, please slow down the taper. I think to get as low as 20 mg after only three months with a diagnosis of GCA is a bit fast. You absolutely need to keep the inflammation under control. As Eileen has said, it isn't slow if it works, and although the higher doses of pred do have more risk of side effects nothing can be as bad as vision loss, and a slower taper is likely to be more successful and ultimately result in a lower lifetime intake of pred.
The Bristol paper, listed here, outlines a suggested reduction plan for GCA:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
"60 mg daily for four weeks, or until remission induction, then • 50 mg daily for four weeks, then • 40 mg daily for four weeks, then • 30 mg daily for four weeks, then • 20 mg daily for four weeks, then • As per PMR regimen for 104 weeks"
lodgerUK_NE pam48607
Posted
I never had a biopsy because it was delayed and I had been on 60mg of pred for 3 days and it would not have showed anything. Luckily my GP and Rhemamologist took no chances..........so unlike other people my sight was saved. .
Go to the British Society of Rheumatologists website and read the Diagnosis and Treatment of GCA.
The Mayo clinic and other major research centres around the world, collaborate through EULUR and ARC to produce those guidelines and they have just finished working on updated ones.
I would feel safe with the Mayo, but I would insist.....no chances with my eyesight so stick to the pred.
EileenH pam48607
Posted
A negative TAB does not mean you do not have GCA - it just means they didn't find the giant cells they were looking for and there are many reasons for that.
Scalp pain and necrosis - and it could be that the scabs are a sign of early such problems - are part of the range of GCA symptoms.
"The rheumatologist I saw here today told me that the sudden onset of symptoms I came down with in July are not at all indicative of GCA " - what were the symptoms?
It is thought that less than half of patients with GCA do get a positive biopsy - and the diagnosis should always be a clinical one, i.e. on the basis of the symptoms.
Never mind the sed rate - did the 60mg deal with the symptoms?
pam48607 EileenH
Posted
Eileen,
my sudden onset of symptoms were: severe leg (thigh) pain which got so bad I couldn't walk up stairs without assistance. I also had to pick up my legs to put them in bed at times. The fevers began about five days after the leg pain started and gradually increased to over 102 degrees, with terrible night sweats and scalp tenderness. All of these symptoms landed me in the hospital for six days, for which they tested me for every known infection to man, but came up with nothing. That is when one doctor on discharge advised me to consider "GCA) and to see a rheumatologist. The Mayo doctor said usually the symptoms of GCA do not come on suddenly and do not typically have high fevers as a symptom. This week at Mayo I also had an MRI of the vessels in my chest area to see if they are inflamed; turns out they are not.
But, as you say, the Prednisone has helped to relieve all of these symptoms over the past three weeks, so what else could this be?
lodgerUK_NE pam48607
Posted
Oops, wrong, "The Mayo doctor said usually the symptoms of GCA do not come on suddenly and do not typically have high fevers as a symptom. "
They can and do: folliinw is an extract from the Diagnosis and Treatment of GCA http://www.pmr-gca-northeast.org.uk/assets/pmr_resource_39.pdf
Symptoms
.
Abrupt-onset headache (usually unilateral in the tem-
poral area and occasionally diffuse or bilateral).
.
Scalp pain (diffuse or localized), difficulty in combing
hair.
.
Jaw and tongue claudication.
.
Visual symptoms (amaurosis fugax, blurring and
diplopia).
.
Systemic symptoms of fever, weight loss, loss of
appetite, depression and tiredness.
.
Polymyalgic symptoms.
.
Limb claudication.
.
Fever, weight loss and other constitutional symptoms.
And what is more those guidelines and the new ones due out early next year, are compiled by a Eular/Arc committee (46 strong) with Patients Reps and world renowned researchers including the Mayo clinic research department.
I suggest you tell him this fact.
EileenH pam48607
Posted
If you are on high dose pred the MRI may well show nothing - especially if it was a PET-MRI where any dose of pred above 10mg will interfere with the result.
pam48607 EileenH
Posted
Lodger UK, thanks for the link to the article; it was very informative for me.
koen1 pam48607
Posted
Pam, I had a negative biopsy too. First very slow onset of PMR with at first very good response on lower dose of Prednisone. But then gradually worsening fever (low) and terrible night sweats, headache and 2 episodes with my right eye. First Scintillating scotoma and later black out for a couple of minutes. Diagnosed GCA. Then put on 60mg followed 8 days later with biopsy, that was negative. My rheum said that often the pred may already have cleared up the arteries. I am now one year later at 15mg prednisone with very minimal side effects. I am following Eileen's DSNS method with great success.