Finally getting my temporal artery biopsy Monday. I’m hopeful that it’s negative so I can cut down on my prednisone, but having symptoms so still may have to stay where I am….grrrr.
Biopsy Monday!: Finally getting my temporal artery... - PMRGCAuk
Biopsy Monday!
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Stickgal316
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Thanks. A bit nervous because I forgot to tell surgeon I might need steroid.
Won’t the surgeon be expecting that? I’d have thought most people having a temporal artery biopsy would be on steroids?
They will in any case check all your details and meds before they do it 😊
I didn’t have a biopsy as my hospital uses ultrasound scans instead, so I can’t speak from direct experience, but from everything I’ve read, it’ll be fine. Good luck 😊xx
I will def make some noise about it Monday when I get there
Surely the result will probably be negative if you are taking prednisone??
Probably but that’s the fault of the health care system. I tried to get it sooner. I’m still having occasional headaches and almost constant blurry and double vision so I’m hoping that if it it is gca, it will show up.
Hi again Stickgal 😊
What dose of prednisolone are you on? If it’s sufficient for you, your biopsy may well be negative. I’d been on 40mg before I got my ultrasound, and was largely diagnosed on symptoms and history as test results were inconclusive.
If it is GCA, it does sound as though you may urgently need an increased dose. Can you speak to a medic before Monday? Blurred and double vision really shouldn’t be left unassessed even for a couple of days.
Do please look after yourself and seek urgent advice if you’re concerned x
I tried that early on. The ER ran some tests but couldn’t do the biopsy so I’ve been waiting. I went to my doc, urgent care and ER and no one seemed to feel the urgency. I’m on 35 a day. Started on 40 but doc lowered it last week. Since then, I’m having back, hip and shoulder pain. Yesterday out of nowhere, my left leg started feeling weak in the upper thigh and was painful and I got a brief but severe headache in my left temple, so I took 40 this morning. Weakness is gone, headache had already resolved, but pmr symptoms are still there. Don’t know what’s going on, but am frustrated with running to Er and urgent care for nothing. Figure I’ll be alright till Monday.
But thanks so much for the concern. I’m worried too
Glad you’ve upped your dose to 40mg Stickgal 😊
Take care and let us know how you get on.
All the best
Nextoneplease x
PS It’s 2.30am in the UK so more posters may be around in a few hours 😊
Good luck!Unfortunately symptoms do rule. Even a negative biopsy doesn’t seem to be definitive, they need to check the right portion of artery and of course the Prednisalone will diminish the inflammatory signs. I wish that the ultrasound scan was widely available. Let us know the outcome.
You'll be fine. I had mine a couple of weeks ago. The waiting is the worst bit. Take your phone fully charged and something to read. They made me really comfortable on the operating table and I was able to chat to the surgeon while he was working. He said I have beautiful arteries and that he had never done it so fast - it took 20 minutes. The worst bit was the local anaesthetic which feels like a wasp sting but only for a second, but they give you lots of little ones. Cup of tea and biscuits afterwards before driving home.
PS re pred, I am on 40mg and was not told to take any extra for the biopsy.
Great! I know it’s really minor but it’s a little freaky
Yes, I described it as surreal.
Hi Stickgal
All the best for Monday but remember a negative result doesn’t mean you haven’t got GCA. Symptoms rule. Mine was negative but Ultrasound positive. If your vision worsens go straight to ER.
Like many others I had negative biopsy four weeks after being on 25 MG’s Prednisolone. Rheumy told me I didn’t have GCA. Did some research and changed doctors. Definitely DO have GCA and PMR based on symptoms and bloods. Very important to treat for eyesight disturbances. Look at British Rheumatology Guidelines. Can’t rely on TAB to rule out GCA.
Have you been seen by Opthamology ? Very important they check the eyes re GCA. I was also told that biopsy was not definitive and 50 pc chance of false negative - esp on steroids for more than a few days . It all depends on what section of the artery they get - it’s very easy to miss as the GCA can be patchy on the artery ..
You will be fine for the procedure - it will be over before you know . I’d imagine the 40 of pred would be enough to cover procedure. ?
Good luck .
Hi there, it’s not uncommon to have to wait a bit and even if you got it next day without Pred in the system it can still be a false negative. What’s the point? Well, if it is positive it really is. It can be negative because the giant cells just aren’t in that 1cm bit of artery they took out because they aren’t always everywhere. The sample might not be big enough; the skill of the surgeon is essential and they need to be experienced, ideally a maxillofacial one. The Pred can influence the result but docs are advised not to withhold Pred before a biopsy because of the risk to sight. In the absence of a negative test they still have to go on symptoms and your response to the correct dose of Pred. That’s what they did with me.You should also have your eyes properly tested though GCA doesn’t necessarily always affect the arteries supplying the eyes either.
I can't understand why you are having the biopsy. My surgeon agreed that it was very unlikely after taking steroids for such a long period that the result would be negative and that finding a section with the active cells was very uncertain and that he agreed with me that I was right to reject the Biopsy. He would have done the same in my place. He did point out that the procedure carried risks to nerve damage but he had never in all his years had a problem. He thought the scan was a more reliable procedure especially since I was still on a high dose. I will certainly be very interested in your result if you go ahead. I told the surgeon that I didn't need one because there was no doubt that the symptoms I suffered before pred. were completely consistent with GCA and after 3 months on 40 mg it was just a box ticking exercise and a pointless waste of his time and the NHS budget.
Oh I wish I would have rejected the biopsy which was done on both sides. It costs me a lot of money, was on 40 mg of prednisone anyway, wasn’t pleasant procedure and still feel pain in that area and it’s been months later. I came out negative but still worry I have it. What is the point of having this done ? Didn’t know I could do ultrasound at the time. The rheumatologist told me after biopsy that my sed rate went down fast after taking prednisone so that was good indication I didn’t have gca so if that was an indication I didn’t have it, why not just rule that out first? Well, they got their money out of me!
so sorry to hear this OonaSt. I just don't understand why they can't get their act together. I'm still expecting my Rheumatologist to have a hissy fit because I rejected the Biopsy but I have told him already that this is a partnership and he has to work with me. It is my body and I won't do anything or take anything unless it can be explained or makes sense.
Where in the US do you live? I'm in NY and understand that ultrasound isn't used here for determining GCA. I was on 10 mg of prednisone when I had my biopsy in 8/2019 and my rheumatologist prescribed 40 mg more for me to take with me at the time of my biopsy and to take all 50 mg immediately when it was over as a precaution since I too was having eye problems. I took the 50 for two more days when she called with a positive result. I remained on 50 for 3 weeks , I was very grateful to her for saving my sight but felt I wanted a doctor with more experience with GCA. I changed doctors and now 2 years later am at 2.5 mg of prednisone and a weekly shot of Actemra. I am fortunate to have good insurance. Good luck Monday. Keep in touch!
I’m in Alabama. I have great insurance and I’m so grateful for that. I see a new rheumy next month so we will see what he says. I fired my old one prior to diagnosis so I haven’t seen a rheumatologist for the pmr or possible gca. My PA from my prior GP diagnosed the pmr and my new GP agreed. So, we shall see what my test brings and what the new rheumy says. Basically trying to keep calm and take it all in stride. The pred helped a lot more in the beginning but every time I try to start the smallest taper it all comes roaring back.
My GCA symptoms were non stop headache in temple area, neck pain into the shoulder and painful jaw not just when chewing. The only thing that helps is an ice pack. I bought a really small one in Dollar Tree and it is the best! I am only recently beginning to see improvement, because tapering caused withdrawal (awful) and secondary adrenal gland insufficiency. My doctor wants me off Prednisone. I guess I will still be giving myself weekly Actemra shots if I'm not affected by the shortage. Again, good luck tomorrow!❤️
If PMRGCAUK were thinking about a national campaign, encouraging more areas to set up ultrasound could be a good one. One of the consultants I consulted told me only around 50 per cent of the country do these. My area of Somerset does not. I think it's in the NICE guidance that it is encouraged.
Trouble is it costs quite a bit of money to train staff and unfortunately the NHS does not have a bottomless pit or a money tree.
Symptoms rule with either Ultrasound or Biopsy. The Ultrasound was introduced after a long trial. It was started to see if the invasive surgery biopsy could be replaced.
Neither are a replacement for symptoms.
Yes to symptoms ruling but ...
Some people have a range of similar conditions or ambiguous diagnoses so it would be good to have more evidence to rule things in or out by a non invasive method.
Around 50 per cent of departments have gone down the route of ultrasound so decided they should afford it... I think it probably depends on how proactive departments are at pushing for resources. Then up to provider management/commissioners (more or less same thing from next April) to prioritise...
Improving the poor state of diagnostics is a big thing in the NHS so I still think this could be a useful area. Something to think about anyway.
Afraid like most things it all down to resources….
Very recent news from my local hospital -
Friends of Dorset County Hospital have raised an incredible £20,000 to purchase a new ultrasound machine for the Rheumatology Department.
But the staff still need training etc…
Really good news that they've got so far, though. I guess it will be harder than usual to get staff training at the moment, but eventually it will come...
Well done The Friends of Dorset County Hospital x
If you are having a procedure check if you need to observe the sick day rules when on steroids. Good luck
Thanks all! I will do the sick day rules for sure if they don’t think I need surgery coverage. I’m doing the biopsy because I still have some worriesome symptoms. I am due for my annual eye exam but was waiting to see what the biopsy shows. There’s a chance that the Pred has caused my low grade cataracts to excellerate and that’s causing some of the symptoms. I do know the biopsy result is dicey but it’s worth the chance that I may get the truth either way. That’s just me personally.
If and when you get to see your optician, ask for your glasses if you wear them to be changed to re-actolite rapide. Pred+Sunshine can and does cause existing ones to grow and, if you do not already have them to start up.
My optician immediately changed mine and I had the start of cataracts - they have never moved since the lens where changed.
If you do not wear glasses, make sure you have a good pair of sunglasses and wear them when the sun shines. I wish it was shining today on this dark grey, black clouds and North East Wind.
I’ll def ask
understand and good luck. Hope the results are the ones you are expecting.
You could be spot on about cataracts Stickgal - mine have developed quickly since I’ve been on pred and in fact I’m going for a pre op next week to get the first one sorted. Good advice from jinasc about sunglasses 😎
…and after operation….
Yes?
Hi. I had a negative biopsy but have been treated due to my symptoms. Interesting procedure, everyone very chatty and pleasant in theatre and I was given a cuppa and a lunch box after and had a little rest before going home. My rheumatologist at the time said that even if all the giant cells had gone in that area there should still be scarring or inflammation showing if it had ever been there 🤷🏼♀️
My hospital now do ultra sounds and i have had them every 6 months until covid.
It’s a very straight forward procedure so don’t worry. All the best 🤗
🤞🍀Xx
All the best on Monday.🤞
If you have symptoms even after the biopsy they won't be able to reduce your pred. A negative result doesn't mean a negative, it just may not be in that portion of artery they look at. I was on 60mg for 10 days before biopsy and it was negative, it has always been my contention, as my rhumy went with the negative result, so none of contention between us, I find a new rhumy! Sorry to say but I found the op very unpleasant, didn't hurt but surgeon had to dig around and go deeper, he said pred causes the arteries to shrink and harder to get at. I continued to get bursts of headache for years afterwards, always freaking me out that I'd GCA returning. Best of luck for Monday!
Biopsy done! Easy Peasy. Slept through the whole thing. Results in a week.
Great news! Well done 😊x
Forgot to mention, when the anesthesiologist came in, he said I noticed you’re on prednisone. We will be giving you an IV dose during surgery. I didn’t even have to tell him. Rural hospital but really in the ball.
Good to hear….
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Having a negative biopsy does NOT mean you don't have GCA - having a positive one is 100% certainty it is GCA, neegative just means they didn't find what they were looking for, Then symptoms rule.
How did the Biopsy go, think I am headed that way.
Sorry. Life got hectic. Biopsy was super easy. Slept through the whole thing. Negative and doc ruled out GCA with consult from eye doc. Blurry and double vision was caused by worsening of my astigmatism and my eyesight in general. Have started the tapering process and doing fine.
Absolutely brilliant am delighted for you. Best from Jersey Blomps
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