Hi. I had a temporal artery biopsy on Friday, results in 3 weeks.
My esr and crp were both normal
My doctor is convinced I don't have gca and I think the biopsy will be negative ( 4 weeks of prednisolone 50mg now)
The problem is that my symptoms return when I try to reduce the dose, even by a minimal 5mg .
Does anyone have similar experiences?
The biopsy will almost certainly be negative. And about 1 in 5 of patients have a normal ESR and CRP - or they may be raised for you but still "within normal range" for a large population. Why does the doctor think it ISN'T GCA? What else does he think it is?
It is possible that the 50mg is barely enough to combat the daily inflammation boost - and as soon as you lower it the residual inflammation is enough to break through. Some people need as much as 80mg to clear things out.
What are your symptoms?
Doctor feels I'm too young at 58.
I've had overwhelming fatigue, some eye pain and tenderness radiating to my scalp, and recently when trying to reduce the dose I began to have pain in my upper jaw.
Im also suffering with quite debilitating cramp in both calves and feet.
Dr can offer no alternative diagnosis and referred me to a rheumatologist 4 weeks ago, but am still waiting to be seen. The waiting list is a minimum of 3 months
You are not too young!
Your “head” symptoms and fatigue (although maybe not the calves/feet issue??) point to GCA in my book.
The cramps may be helped by magnesium supplement.
Thank you for that. I did wonder if the crap could be attributable to prednisolone?
* cramp, not crap. (Although now I think about it......😉)
Mmmm....I think we’ve all thought that over the years! 🤦🏻♀️
Let’s call a spade a ♠️. The entire disease is crap!
Well yes. You have a point. But even crap can become useful in the form of manure ...
We do most days! CRP = CR-P!😂😂
Well your doctor is WRONG! The age quoted in all up-to-date guidelines is over 50. And that doesn't mean it doesn't happen in younger patients, just that it is not common. There are plenty of reports in the medical literature and warning not to miss a diagnosis because you are too fixated on the age of the patient.
If there is any question of GCA it is a medical emergency - not urgent or routine. Would he accept 3 months for a patient he thought was having a stroke or heart attack? Same level of urgency.
Thank you for your reply.
To clarify, my GP started me on 60mg prednisolone as soon as I presented with my symptoms. She referred me to an ophthalmologist who immediately discounted gca and reduced the prednisolone to 40mg.
Incidentally he performed the biopsy on Friday.
I couldn't function on 40mg so we increased to 45mg but was still experiencing symptoms so grudgingly he's increased dose to 50mg.
I do feel as though I've been 'parked' . Just hanging around in Limbo and in the meantime the steroids march on....
Hi Linda,
When you say my doctor doesn’t think I have GCA are you referring to the ophthalmologist? Sounds like the GP did because they initially put you on prednisone. Your symptoms are pretty classic I think. Welcome to the forum.
Hi and thanks for replying.
Yes, the sticking point seems to be the ophthalmologist who says I'm too young and my optic disc isn't affected.
I'm concerned that when I eventually get the biopsy results I'll have been on prednisolone 50mg (which I think is the bare minimum treatment dose for me) for 7 weeks.
I'm so glad that I found my way to this forum. I've been feeling pretty list and abandoned these last few weeks.
Strange - they are usually far more risk-adverse than rheumies as they are so much more aware of what sight loss is like to live with. I'm glad the optic disc looks fine - but that doesn't mean it isn't GCA, it means they got there first ...
Well, there are many of us on this forum who have GCA but are thankful our optic nerve has not been affected. If a doc waits for that before they are willing to diagnose you they have it all backwards.
Can you check in with your GP and explain all this and your concern? He/She May be willing to follow you until you see a rheumatologist.
Thanks. I think that should be my next move.
The ophthalmologist seems to be on a mission to prove its not gca.
He actually said that he'd eat his hat if the biopsy was positive ......
Recipes anyone???
My ophthalmologist was the same very insistent it was third nerve palsy that gave me terrible headaches and double vision and not GCA. The predisolone did ease the symptoms.
Hi not sure if you are in the uk but my biopsy results were available in 8 days, I did have to chase them as no one seemed to know who was dealing with it
I also had an oddly 'resistant' ophthalmologist soon after a dx of GCA - made in conjunction with my GP - based on clinical symptoms as I had been on Pred for a few weeks prior for PMR. WHAT is their deal ??!!! Mine also said my optic nerves were then fine (forgetting I had possibly 'saved' them with the Pred I had been taking ). I think they regard GCA as 'so rare' they think we could not possibly have it - and the irony is then that they dismiss genuine cases so don't even realise they might have 'inadvertently' seen a few. Sad thing though is the loss of eyesight and quality of life for many - induced by such ignorance - my mother most certainly lost much of her vision and was never diagnosed in time to also prevent a series of small strokes which followed and which were also never sufficiently 'explained' .
I don’t have GCA just PMR but I had very painful foot and leg cramps in the early days of the condition. I am sure it was the condition and not the pred as they began prior to diagnosis. They have greatly diminished in frequency 16 months down the track. I do take magnesium and inflammation markers are back to normal which I assume was the cause - originally ESR 70, CRP 29.
I do hope it is all sorted for you very soon. Marea 🌻
The TAB will more than likely be negative, mine was but had positive Ultra Sound. I only waited a week for the biopsy results (in the UK).
As others have said if you're symptoms return as you reduce it's likely you have the AI.
Thanks Telian.
It's always helpful to hear from others who have been through it.
Will certainly bear the ultrasound in mind.
I was lucky as my hospital is a teaching hospital - apparently not all hospitals provide US - they don’t have doctors qualified to carry out the procedure - I understand it takes around six months to train them.
Best wishes.
Not even all teaching hospitals - the doctors trained to do it were working at the units participating in the study.
Suppose I’ll notice a difference when we move....
My husband rushed me to hospital at 9pm after my jaw ached to eat or speak, my scalp was very tender and my cheek bone and ear were hurting. A & E took bloods immediately and gave me 60 mgs pred. (Was already on 20) . They and I were convinced it was GCA. I went home at 4 am. (You don’t choose this as a way to have fun). Several months later I had the biopsy which I am glad to say was clear. Two and 3/4 years later I am still on 15 mgs pred. Since that time I have now been diagnosed with RA, sjogrens, lupus on top of PMR. And prednisolone induced insulin dependent diabetes! It’s a great like if you don’t weaken :). I say you can’t be too careful.
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