Diagnosed with GCA two and a half years ago. Off Prednisolone and now take 10mgs. Methotrexate weekly. I continue to have head pains and some days I have overwhelming fatigue, helps if I rest briefly and then carry on, but blood results are normal and I am afraid I may be considered malingering, although I continue to have a normal life. Keep plodding on.
Tomasina
You can have GCA without it being reflected in the blood, in fact you can have practically any auto-immune condition without raised markers, I have never had any raised inflammation markers whatsoever but I have both PMR and GCA.
The current thinking is that Methotrexate, while being useful in some PMR cases as a steroid sparing agent, has little or no effect on GCA. I would suggest you go back to your doctor or rheumatologist and ask for a review. I always worry in cases such as this as it is your eyesight which is endangered if the GCA is present in the temporal arteries and once gone it is final.
Thank you for your comments. I did have very high ESR and CRP prior to my diagnosis and with Prednisolone and then Methotrexate the results returned to normal. I am due to see Optician and will book that asap and will be seeing Rheumatologist in July.
Tomasina
tomasina
Have you read and downloaded the BSR Guidelines on Diagnosis and Treatment of GCA. If not I suggest you do so.
Read the whole thing and see if you have been offered all the checks and tests.
Methotextrate is a steroid sparing agent and does not cure or control GCA.
I am surprised that they went on blood tests only, as they are guidelines the clinical symptoms must be taken into account.
The word "normal" upsets me. Too often I see, "My blood tests were normal" and it means nothing. What are the numbers? The numbers? For ESR the "normal" for the population means nothing. What matters is the value when the patient is health: the normal for that particular person. Correct treatment of GCA depends on knowing the PATIENT's normal and this can only by guessed as the lowest value seen with high prednisone.
Get the numbers and keep a careful record. Question the doctor who uses the word "normal".
The GCA treatment problems -- controversies -- are described in detail here:
frontal-lobe.info/gca/gca.html
where there is the long web page, a book available (free or bound), and a 20 minute video. Please message me if you see any error..
Thank you for your comments. I can understand the blood results are significant in my particular case as they were exceptionally high when I was diagnosed with GCA, and very gradually the results have returned to "normal" for the population.
I saw an optician yesterday and all seemed ok.
Head pains persist. I have also noticed recently that I have "white fingers" if I am cold, usually the two middle fingers. I think this is probably related and will report it to my Rheumatologist when I see him. Have any others experienced this white finger situation. Never had it before, and we are in the "summer" now!
Tomasina
Symptoms of Temporal arteritis but blood tests normal
fatigue at 3.5mg but cortisol and synacthen in normal range
What if I have normal ESR and CRP?
Neck and Back Head pains
Flare up but normal blood test levels
