I was prescribed 60mg/day of prednisone when it was suspected I had GCA, over two months ago. When the biopsy proved negative, I was told to reduce the dosage by 10mg/day every 2 weeks. After another two weeks I felt awful and spoke to the pharmacist who suggested I reduce by 20mg/day every 2 weeks. I let my doctor know I had done this but called her two weeks later to let her know I wasn't feeling well. She attributed this to a slight change in my thyroxin level (!) After another two weeks I called her again and told her all my symptoms (classic side effects of prednisone). She has ordered more blood work, and asked that I stay on the 20mg/day I am currently on.
I think I weaned off too quickly, and thought someone in your group might have had a similar experience and could help me; I do hope so!!
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thornburyg
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I think that even if your biopsy came back negative doesn’t mean that everything is ok.
I luckily haven’t had GCA , but I do remember someone posting here about it.
I’m sure one of our ladies can reply.
In the meanwhile take a glance at this below. 👇👇
Results Despite visual symptoms TAB may result negative. Rate of negative TAB varies from 7% to 40% in pat suspected of GCA. TAB should be done 2 to 6 weeks after commencement of treatment, and at least 1 cm. Contralateral biopsy is controversies, usually it increases the rate of GCA diagnosis of only 5%.
Conclusion If TAB is still however negative, but clinical suspicion high or Ultra‐Sound suggests GCA or complications typical of GCA, like anterior ischemic optic neuropathy, patient should be treat as biopsy‐positive GCA patient. If the clinical suspicion is low, features considered atypical or alternative explanations available, rapid glucocorticoid therapy should be tapered.
So appreciate your getting back to me - I was feeling quite isolated since my 'real' GP hasn't been available since March (working at the hospital during COVID) but THANKFULLY I have a friend who, unfortunately, has had GCA and she put me on to your website.
Don't want to complain but I don't understand everything you wrote such as TAB, contralateral biopsy, anterior ischemic optic neuropathy and rapid glucocorticoid therapy.
I don't like the idea that I really may have GCA, but understand that can be the case even with a negative biopsy.
I will complete my profile and hope that is helpful.
TAB, Temporal Artery Biopsy - biopsy of the temporal artery to identify the typical giant cells
contralateral biopsy, if the biopsy on one side is negative, the other side is sometimes biopsied but rarely addds much information
anterior ischemic optic neuropathy, lack of blood flow to the optic nerve causes ischaemia, lack of oxygen, and that affects the appearance of the optic nerve at the retina
rapid glucocorticoid therapy - if GCA is suspected then high dose steroid therapy should be started. If the results above suggest that it is not GCA after all, then the dose should be reduced quickly
Well, things have moved along a bit since I last wrote. Firstly I actually got a real
appointment with the doctor, as a result of which I now have a virtual appointment with a Rhuematologist on Tuesday! I also saw an Optomotrist who unlike my Opthamologist, said I needed cataract surgery. I have cut back to 15mg/day of prednisone, and will confirm that is where I should be when I speak to the Rheumatologist .
I still get more tired than I feel I should be, but I can always nap.
What symptoms did you have leading doctors to believe you might have GCA? ....
...and what are your symptoms now? Are you sure they are side effects of Pred, or could they be GCA?
As Yulik says - just because biopsy was negative - doesn’t mean you don’t have GCA.
I think that needs to be ascertained before any further reduction.
Unfortunately as you’ve been on Pred for 4 weeks or more - your blood markers may be okay - they do have a tendency to lag behind the symptoms of your illness - if that’s what your issue is - and not just steroid withdrawal.
When you say you feel awful - how do you feel awful? How long had you been on 60mg pred before the biopsy? What were your symptoms that led them to suspect GCA in the first place?
I am unsure how to reply to you all, but will do my best. My initial symptoms were that I had elevated sed rate as long ago as last December, which hadn't changed when more blood work was done in June. I went to the doctor late June as I had a chronic, albeit mild headache, something I rarely, if ever, get. A biopsy was booked for two weeks later, but was prescribed 60mg/day of prednisone immediately. The biopsy was found to be negative, and I was told to reduce the dosage by 10mg every two weeks. After another two weeks I began to feel exhausted, sleeping again shortly after getting up, experiencing joint and
muscle pain, along with feeling weak and very depressed.
These symptoms continued through August, but my doctor didn't change anything. I haven't been referred to a Rheumatologist and there really isn't one within a two hour drive of where I live, and don't really think I could drive that far.
I hope this answers the questions you asked, and will look forward to hearing back from you.
Quick answer - tap your avatar (picture ) top right of screen - new page -you can then update profile.
Longer answer - just because your TAB was negative doesn't mean you don’t have GCA - just means the tiny piece of tissue taken did not have any rogue cells in it - not the same thing.
Your symptoms are the main thing - and they sound suspiciously like GCA - and did the initial dose help?
Think your doctor needs to re-evaluate his thoughts. .... and if it is GCA you do need to see a Rheumy.
You might like to impress upon your doctor that if you have GCA and it’s not treated correctly you are in danger of sight loss - and is he prepared to have that on his conscience?
"You might like to impress upon your doctor that if you have GCA and it’s not treated correctly you are in danger of sight loss - and is he prepared to have that on his conscience?"
... Or stroke or heart attack.
You really do need an expert to provide some input - at least someone who realises that after 2 weeks at 60mg pred they were very unlikely to find anything with histology.
The medical term for looking through a microscope for anomalies (je GCA cells in our case) in the sample of artery (or any tissue) taken during a biopsy.
"Histology is the study of the microanatomy of cells, tissues, and organs as seen through a microscope. It examines the correlation between structure and function."
Hope this will be my final message to you all. I did see the doctor, and got her to refer me to a Rheumatologist. Amazingly got a 'virtual' appointment within days. Am now being monitored on a weaning dose of prednisone. Hopefully things will improve. Thanks for all your advice and support.
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