I am currently waiting for the results of a temporal artery biopsy after severe headaches, neck and shoulder pain, jaw pain, no appetite, and extreme fatigue. I was started on 60 mg of prednisone once a day, with the hopes of avoiding ocular issues, pending biopsy results. My neck pain and shoulder pain is much better after a week on the prednisone, but I still have head pressure and, quite a lot of pressure above and on the sides of right and left temples. Also having jaw soreness, difficulty opening my mouth, and swollen and sore salivary glands about five minutes into eating. Is this typical symptoms after just a week on prednisone? Does the head pressure in temples ever go away? Do these symptoms get better over time, and if so, how long of a full dose of 60 mg of prednisone effect any improvement? Please forgive me, but I know very little of this disease and before struck with this recently, I was a very active 65 year old female university professor. Any kindness in your various replies will be much treasured with gratitude.
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I too have GCA diagnosed Dec 17 I have had most of the symptoms you describe and was on 60mg Pred For Just over 6 weeks and have tapered down to 6mg a day. I would say the first two months were the worst for fatigue and pain above my eye. However it has all gradually improved still get tired but just did 8 hours today at our church Flower Festival baking etc. I was told by others on this site to take care of myself and just take it easy. I am so thankful that I am still progressing and pray it will continue. Just be kind to yourself and take small steps forward. X
You are such an angel for your response. I do so appreciate hearing you are doing better. I would love to hear your story, how you were diagnosed (biopsy?) and how your treatment care went. Right now I am seeing a neurologist and opthamalogist but not a rheumatologist, so hopefully they will refer me to one. Any other information that you feel might prove helpful wouod be greatly appreciated and thank you for your compassion. I am awaiting temporal biopsy results and MRI with and without contrast, but because I had been experiencing symptoms for four weeks before I saw a doctor (was chalking it up to horrendous migraines) when they heard my symptoms they diagnosed GCA even before biopsy. Thank you again!
Sorry to hear you have GCA, but good that you have started Pred and some symptoms are receding. Hopefully the rest should reduce within the next week or so, but if they don’t significantly then you need to contact doctor - you may need a slightly higher dose.
Did you have the biopsy before or after you started Pred? Whichever, it may come back as negative, although that doesn’t mean you don’t have GCA, it just means the sample they tested didn’t have an GCA cells - not the same thing at all!
Have a look at this for a bit more info, and although I had GCA only it does cover both GCA and PMR, and hopefully not too scary!
Please come back with any further questions you may have, you’ll always get a reply, and let us know how you progress.
Thank you so much. I started the prednisone on Thursday of last week and had a biopsy four days later. My opthamalogist insisted I take the prednisone straight away, as he said I could be up to two weeks on prednisone and still get a positive biopsy result and wasn’t willing for me to risk the blindness issue with all the symptoms I was having. We are awaiting biopsy results but he is insisting on a biopsy on the other side too, in case the first one comes back negative. I will talk to my neurologist on Monday about upping the prednisone (the neurologist made the initial diagnosis) and I do not as yet have a rheumatologist. How did you handle the first weeks/months. All I feel like I can do is rest in bed. What protocol did you follow for recovery and are you sufficiently recovered? Thank you for the information which I will thoroughly study! I appreciate your kindness greatly.
I have GCA and PMR followed. I had lots of visual disturbance and migraines. I had a good GP who knew about GCA and as I got worse and lost the sight in one eye, which fortunately came back, he fast tracked me to Rheumatology and I was diagnosed within 24 hours and put on 50mg prednisolone, all GCA symptoms disappeared. I had a negative TAB but had a positive Ultra Sound - as DL says a negative result doesn't mean you haven't got it, just they didn't get enough of the inflamed 'bit'.
Don't know if I'd have a second biopsy - not necessary in my book, ask if you can have US? Although not everywhere do those it they haven't the specially trained staff.
If the symptoms aren't improving it probably means you're not on a high enough dose. You need to keep your Rheumatologist, (I note you say Neurologist, they do not treat GCA?) updated with all your symptoms. I'm afraid all you can do is rest and listen to your body, you can't rush through it I'm afraid. Take heart the symptoms will improve over time as you reduce the steroids, but it's a slow journey so patience is needed. ATB.
What are your blood inflammatory markers now, ESR & CRP? They should rapidly come down to the normal values. You may be a candidate for pulse dose prednisone due to jaw claudication, 1000mg/d x3d, per BSR guidelines.
" The BSR guidelines advise prednisolone 40 to 60 mg (at least 0.75 mg/kg) daily until the resolution of symptoms and laboratory abnormalities for patients with uncomplicated GCA (without visual loss or jaw claudication); 500 mg to 1 g of intravenous methylprednisolone per day for 3 d for patients with visual loss or a history of amaurosis fugax; and at least 60 mg prednisolone daily for patients with established visual loss."
In my case I suffered some visual loss and was offered 80mg/d oral pred or 1000mg by infusion. I chose 80mg. The CRP blood factor only came down a small amount in following 2 weeks. 20 days after the vision loss I suffered a stroke caused by the GCA. I was then given 1000mg x3 days pred and CRP finally returned to normal.
I recommend expediting a visit to a rheumatologist as well as closely following CRP ESR blood test results.
It depends on the country/avaialability of specialists. It is quite common for opthalmologists to diagnose GCA - and often a good thing as they do tend to be rather more proactive about using high dose steroids as they are so aware of the risk to vision. Neurologists tend to be involved for differential diagnoses but don't seem generally to then continue with care. The main thing is that you got a high dose of pred - and although the pulse therapy is recommended it really doesn't seem to be used a lot. If a patient already has visual symptoms it would be advisable but otherwise immediate high dose oral pred probably suffices. What is most important is that you have a doctor who is confident in their diagnosis and who won't try to rush you off pred - that just leads to tears.
My best two tips are: listen to PMRpro and DorsetLady. There are other wise people on here too - you will find them as you go along.
How fortunate you were that your (suspected) GCA was treated in time to save your eyesight. A "Proper" Doctor ! I was not quite so lucky.
My symptoms were somewhat similar to yours - dreadful jaw pain when trying to eat, and beastly scalp pain. I did not have most of the others you describe. However - they all went away within about three days of 1000 mg intravenous steroids followed by 60mg prednisolone - but all too late to save my right eye.
So - am not certain that you have GCA - but it's s strong probability. The correct action is to put you on steroids - JUST IN CASE IT'S GCA. - and they have - Good!
Let's see that the TAB comes up with
You may be in for a REALLY rough ride People1, including osteoporosis and diabetes 2 as steroid side-effects - But do stay in touch with all us prednisolone zombies as you go along
Thank you so much Arthur463! I so appreciate your input. I am still awaiting biopsy results. My ESR and CRP were normal but my scalp tenderness, jaw issues, severe headache and neck/shoulder pain with fatigue and no appetite were so bad, my neurologist put me in 60 mg immediately especially since this had been going on for a month while I was out of town working on a PhD dissertation. If my TAB comes back negative the opthamalogist wants to biopsy the other side. Not crazy about that idea, but not sure what else to do, under the circumstances. When I began the 60 mg prednisone the horrendous neck, shoulder and intense headaches got better within 48 hours, but once all that pain subsided I felt a lot of pressure in my temple areas and above my ears, which I still have and huge fatigue. I am not sure if that is just part of the process or not. At any rate, I also had an MRI with and without contrast (not sure exactly how diagnostic that will be for GCA) and I will get the results of that tomorrow. Thank you so much for your kindness in your response. At the moment, an opthamalogist (did the TAB) and my neurologist (diagnosed and prescribed prednisone pending biopsy report) are handling my case, and I am assuming they will refer me to a rheumatologist at some point.
I'm sure somewhere that there was a study that concluded that doing the contralateral side didn't significantly increase the chances of getting a positive biopsy. If the symptoms say GCA it is a fair bet it IS GCA.
"It has been advocated that to improve the diagnostic sensitivity for GCA, bilateral temporal artery biopsies should be performed. A positive biopsy specimen was found in 5% of those who had a normal temporal artery biopsy from the opposite side. ...
The diagnosis of GCA is clinical. It is reinforced with temporal artery biopsy. By using the American College of Rheumatology scoring system to aid in the clinical diagnosis of GCA, the number of temporal artery biopsies needing to be performed can be reduced thus allowing earlier treatment and preventing associated morbidity from a temporal artery biopsy. Temporal artery biopsy should be reserved for those with an ACR score of 2, that is those in whom the biopsy result will truly affect the patient’s management."
Will the TAB result change your doctor's decision to treat? The second side has only a 1 in 20 chance of being positive if the first was negative - but a negative result DOES NOT MEAN IT IS NOT GCA. It means they didn't find what they were looking for. Not at all the same thing.
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