Hi everyone, just thought I'd let you know have managed to get the result of biopsy I had two weeks ago, it shows "no active inflammation". Not sure if this suggests there is evidence of previous inflammation, guess I will have to wait till I see Rheumy on the 20th November. I was clinging on to the small chance it may find something, the symptoms continue, and the right temple burns worse since biopsy, I thought it may ease off after they cut away a section. Have had a problem with a small section of the scar healing, a small section split open on Sunday leaving a 2 inch piece of suture hanging :-?. Also since having the biopsy have managed to develop a stress fracture of the ankle (distal fibula), so I am wearing a walking boot. This allows me to take it off for driving, so I can still go to work, although getting a few funny looks from my patients. Occupational Health have given approval to me working, just find at end of 12.5 hr shift ankle is pretty swollen. Will let you know what outcome with Rheumy visit is in 2 weeks, I'm hoping she will let me increase steroids to see if all these GCA type symptoms settle. Take care everyone. Best wishes Runrig
Update on Temporal Artery Biopsy: Hi everyone, just... - PMRGCAuk
The biopsy was always going to be a bit of a double edged sword. Great if it was positive and gave you a diagnosis, but I hope your rheumy doesn't use the negative result against you.
Hopefully they will give you a trial of high dose steroids to see if your symptoms improve.
I agree with Keyes - such a relief to learn of an all clear biopsy on the one hand but on the other it still leaves you searching for an answer for your continuing pain. Plus it is impossible to feel reassured by the biopsy results when we are aware that a negative biopsy doesn't mean that we don't have GCA because the large cells that they are looking for might just escape the tiny portion removed. It does seem as though a trial of higher dose steroids is the way to go at the moment, unless, of course, there is any chance of you getting your rheumy to arrange a PET/CT scan for you at your forthcoming appointment. You must be one very strong lady to be able to continue with your work through all this suffering - do take care.
Thanks Celtic for your kind words. My Rheumy organised a CT scan in May but radiologist disagreed with the use of contrast to look at blood vessels. So had non contrast CT which was clear. I still have my second opinion From another Rheumy on 29th Nov, so hopefully one of them will agree to trial of high dose steroids. I have very strong work ethics and do not like to be off sick if I can help it. Hope you are well, cheers Runrig x
"My Rheumy organised a CT scan in May but radiologist disagreed with the use of contrast to look at blood vessels." Have you thought about complaining about this?
Personally, it may be worth asking why specialist's order to have CT with contrast was refused. I would, personally.
I had a temporal biopsy last year just prior to Christmas with a negative result , I was told that they expected it to negative as I had been on steroids on and off for 5 years and constantly for 3 months prior to the op . So I was increased on pred to 60mg in case, I have spent many days wondering why they did the op if they were going to give me the dreaded steroids . I had a bad reaction to the pills and had to reduce very quickly, pain came back immediately and a consultant had to prescribe morphine. I still struggle and am now seeing the pain clinic and immunology. Hope you have more success but don't worry too much about a negative biopsy. Well done also for continuing to work I had to give up in January and do miss it. Take care and best wishes for a speedy solution to pain relief.
" I had two weeks ago, it shows "no active inflammation". Not sure if this suggests there is evidence of previous inflammation, guess I will have to wait till I see Rheumy on the 20th November."
It sounds extremely dismissive to me and "no active inflammation" doesn't really help the patient AT ALL. I've heard this before myself. If this result were so so reliable, they wouldn't have considered to keep you on steroid. Doctors know these things aren't always clear-cut.
I'm not sure if this type of test can actually reveal 100 % as to what's active and what isn't. I suspect, no biopsy/or any lab tests are 100 % reliable.
The biopsy is positive in about half or less of patients with clinical symptoms of GCA - and is even less likely to be positive if the patient has been on steroids before the biopsy. The cells aren't present continuously in the tissue - there can be areas with none anyway and the pred reduces the number. Bad biopsy technique, poor technical ability in the lab, all sorts of things make it a dodgy test. But it has been all they have. A new technique using ultrasound has been developed and trialed, now all that needs to be done is find some money and train enough technicians.
The docs are told biopsy is the "gold standard" test for GCA - in the sense that if you do find the cells it is 100% sure, that is true. They often DON'T realise the shortcomings of any test - biopsy or blood test. And you are right - nothing is 100% reliable, especially if only done once. If you are surprised at a result - ask to do it again if possible. Apparently, however, doing a TAB on both sides doesn't improve the results.
Thanks for the feedback PMRPRO. I feel it would be best to leave the other temple artery in case 10-20 years down the line this all recurs.
I have a new Rheumy now who although skeptical won't dismiss it. I'm waiting for an MRI to see if that shows inflammation, and to have nerve conduction studies of my tongue to see why it spasms all night. To see a neurologist in case it is MS. However I'm convinced the tongue is vascular as clots appear when the spasms start. Jaw cramping continues. I'm due to start Azathiprine soon, just waiting on blood test results first. One day they will have an answer