Just wondering how many have had negative temporal artery biopsy?

[RiviS7]

Hello,

I just got my results from temporal artery biopsy for suspected GCA and it says that it was negative. I will still be going to the Cleveland Clinic in October to talk with a rheumatologist there since I have had so much damage from 8 years ago, but wondering if anyone got a negative biopsy result and then was confirmed later on? I will go off prednisone until I get a definite diagnosis, which if it's anything like the last time will not happen. I will always be wondering, FMD or vasculitis?

[SnazzyD]

I didn’t have a positive biopsy and there was no opportunity to confirm later. The only confirmation for me was that Pred worked on my symptoms including my failing sight, and when I didn’t absorb it properly for a time, they came back.

I know occasionally someone here has had a biopsy on both sides. Perhaps a specialist ultrasound on the other temple? Still far from a guarantee though, GCA isn’t necessarily where they are able to look.

[RiviS7 in reply to SnazzyD]

Hi Snazzy, my presenting symptom was mostly jaw pain, a little blurry sight, but I had optic nerve swelling from 8 years ago too. My eyes are always troubling me. Jaw pain did get better but not completely. I will have blood work checked again on Friday. The damage from last time was concentrated in my intestinal arteries and liver artery. This stuff is just crazy!

[Grammy80 in reply to RiviS7]

I wonder if Cleveland Clinic would have a neuro-opthalmologist? Mine has for sure been the window into my eye. My best💞

[RiviS7 in reply to Grammy80]

I will definitely look into that Grammy80, thank you.

[DorsetLady PMRGCAuk volunteer]

As SnazzyD has said a negative biopsy doesn’t necessarily mean you don’t have GCA - just men’s no evidence in the sample taken.

Have to say I’m a bit concerned re your statement - I will go off prednisone until I get a definite diagnosis.

What dose are you on? And you shouldn’t be stopping Pred whilst there is a possibility of GCA.

There’s a heck of lot of things that can happened between now and October…

[RiviS7 in reply to DorsetLady]

Hi DorsetLady, Yeah, I talked with my primary. She recommends I stay on it and taper slowly down until Cleveland Clinic. I'm on 50 mg, but having a lot of symptoms from using the med: dizzy, off balance, low heart rate, and extremely tired. I have fatty liver and my numbers have been elevated last few months. Not sure if high crp and esr is from fatty liver.

[SnazzyD in reply to RiviS7]

I recognise those side effects. I was so wobbly when it was at its peak each day I had to take it at bedtime to sleep through the worst before waking at the crack of dawn when the jitters bit started. It did feel questionable at times that I was taking such a powerful drug for something that wasn’t proven.

Awful though this feels, I wouldn’t stop Pred if it is helping the symptoms albeit adding in a load of others. If you have been on it more than 3 weeks, it is also dangerous to just stop because of induced adrenal insufficiency.

[DorsetLady PMRGCAuk volunteer in reply to RiviS7]

Can understand how you feel…but until you know for sure, you do need to take the reductions sensibly. Best of luck

[Manihiki]

I did seven years ago but my rheumatologist stuck with me on symptoms. At that time my kidneys were affected. Just had a bad flare and a scan showed my face arteries were seventy five percent inflamed so twenty five percent five percent. Definitely GCA and was preceded by problems with kidneys again. Kidney specialist predicted grumbling GCA and he was right!

[JaiSea]

I had temporal biopsy both sides but the outcome was negative. However my positive response to steroid treatment, the return of symptoms after tapering, convinced my Rheumy it could only be GCA. My diagnosis is still ‘suspected’, as the gold standard of actual evidence wasnt achieved. I’ve not been offered any other form of assessment, although I’ve been through multiple scans to check it isnt another medical issue creating similar symptoms.

[RiviS7 in reply to JaiSea]

Thanks JaiSea it is so frustrating when you can't get a definite diagnosis. Looking back at my notes from 8 years ago I had all the classic things: low grade fever for 4 months, esr 68, dizzy, headaches, stomach pain, pain in hips and shoulders, optic nerve swelling. It's just all those symptoms came at different times over i think a couple year time span, and so doctors just couldn't make the connections. The angiogram and catscans are what revealed all the damage after the fact. But, still I ask myself, should I have been on medicine for 8 years on the off chance this would happen again? It didn't come up until now. It's just hard to know what to do to prevent it.

[Caloo650]

I had 2 negative biopsies but as I had started on prednisone it was no wonder. The specialists who did my second one suspected it would be negative as she said she can usually feel the giant cells in the arteries before she starts the cut. It was still a positive diagnosis according to rheumie because of the symptoms of blurred vision and severe headache. I'm on 3mg prednisone with no further symptoms, hopefully for the future

[PMRpro Ambassador in reply to Caloo650]

Frankly - I hope you misheard your specialist because I would be seriously suspicious of the knowledge of someone who claimed to be able to "feel the giant cells". They can only be seen in histological specimens under a microscope!!! And just because the biopsy is negative doesn't mean it isn't GCA. All it means is they didn't find the cells and that can be for a whole range of reasons. Not least because the GCA isn't present in that bit of artery - it might be there half an inch either side or in a whole load of other arteries though.

That bit of artery is used because it is superficial and easy to get at and you can manage without the blood supply from it as there are lots of other local options.

[Caloo650 in reply to PMRpro]

She definitely claims to have felt them in some people before the biopsy. Interestingly rheumie often used to feel my temples at a visit. Maybe because the artery is so superficial it is possible to detect swelling? Of course I don't have a lot of medical knowledge and can only record what I was told. I studied medical science, not medicine.

[PMRpro Ambassador in reply to Caloo650]

You can feel swelling, the other reason for checking the artery is to see if there is a pulse, If there is a strong normal pulse it reduces the likelihood of GCA affecting that artery as the narrowing tends to reduce the blood flow and so the pulse. But just because there is a good pulse and no obvious swelling doesn't mean you haven't got CCA and far too much reliance is often put on such things.

Me being picky maybe - you may be able to feel EFFECTS, you can't feel the CELLS.

[Caloo650 in reply to PMRpro]

Aahh I see what you mean. I thought perhaps rheumie was just getting close and personal but unlikely at my age!! I've always been treated for both GCA and P MR that appeared 2 weeks after GCA. Rheumie was keen to get me on actrema but couldn't because of the indefinite diagnosis

[Broseley]

My biopsy was negative but it was a week after starting pred. They still diagnosed GCA due to my symptoms and bloods.

The biopsy site was tender for over a year afterwards though!

[RiviS7 in reply to Broseley]

Thanks Broseley, my biopsy site is very painful right now. I see doctor tomorrow about it.

[Telian]

Hi, a negative biopsy doesn’t mean you don’t have GCA. I had the same negative result but did have a positive Ultrasound. I do know Ultrasounds aren’t always available. I would still be cautious and continue with the steroids. I too suffer withdrawal symptoms but would not risk sight loss.

Wishing you all the very best in this bumpy journey. 🌺

[RiviS7 in reply to Telian]

Thank you Telian

[Moaningxcat]

I had head splitting pain, went to the ER and was diagnosed with GCA. Inflammation markers were very high. I did have a biopsy while in the hospital and was negative. I am currently being treated for GCA on 30 mg of prednisone daily and 15 mg methotrexate weekly. I’m having some difficulty tapering from that, however.

Good luck with your Cleveland Clinic visit.

[RiviS7 in reply to Moaningxcat]

Thank you Moaningxcat. How high were your numbers? I have to wait to get further testing at the Cleveland Clinic in October.

[Moaningxcat in reply to RiviS7]

I don’t know the numbers from the ER, only that someone told me they were sky high…. Broesley mentioned a sore biopsy site a year after the biopsy. My biopsy is still sore from April. I wonder if I have something else going on besides GCA as I have had a productive cough, chest heaviness, and a bronchitis kind of feeling. Seeing a pulmonologist in November. Sorry I don’t have specific numbers for you…