Just an update on my current situation. I finally have a temporal artery biopsy scheduled for December 1, 2015 and am happy to know that I can start prednisone afterwards so my head pain and tenderness can begin to go away. I know it may sound odd, but I hope the biopsy shows I have arteritis since I cannot understand what else could be causing my temporal artery pain and want doctors to take me seriously and help me get better as quickly as possible. Out of curiousity and the fact that my blood tests for ESR and CRP have always been negative (causing much confusion among doctors listening to me describe my symptoms and much personal frustration since I had to convince doctors to treat me for a vascular problem), I was doing some research into more sophisticated blood tests that could be used to possibly indicate the presence of vasculitis (in partcicular GCA), and found an an article describing the usefulness of a blood test for plasma levels of interleukin-6 (IL-6), a type of pro-inflammatory protein that is produced in excess when someone has GCA:
The article states that 76% of untreated GCA patients have an elevated ESR and 92% have an elevated IL-6 plasma level. Additionally, the article states that, among those GCA patients undergoing prednisone therapy and had flares of GCA during treatment, 58% of them had an elevated ESR while 89% had elevated IL-6 plasma level. This article goes on to state that the IL-6 plasma level is perhaps the most sensitive blood test that would indicate GCA in untreated GCA sufferers like myself. Tocilizumab is one medication being researched in clinical trials and studies that suppresses the inflammatory effects of IL-6, and has been shown to accelerate the process of tapering steroids and ultimately, inducing remission
I just wanted to arm others with useful medical information that they can bring to their primary care doctors and rheumatologists in case they are suffering with being unable to get a GCA diagnosis when they are experiencing all of the clinical symptoms (as what has happened to me) without the positive results of any blood test or scan to explain to doctors what your illness could be. From my experience, seeing numerous doctors (close to 20), going to hospitals, losing my first job as a young man due to illness, losing friends and the support of family, losing a girlfriend, and being unable to get a proper medical diagnosis for MONTHS and YEARS at a time while suffering from fatigue and constant physically debilitating pain as a result of the illness is probably the most lonely and depressing thing one can go through in this world. Many of us share this experience and it is heart-breaking. If this information can help at least one person get the proper diagnosis faster to save your eye sight or even your life (or job if you are still working), I will be incredibly happy. To doctors, our bodies have to show something quantitative through testing to warrant a diagnosis, and any patient experiencing symptoms with normal blood work indicators (ESR and CRP), please request an IL-6 plasma level blood test as well as a temporal artery biopsy from your doctor in order to help steer him or her in the right direction, regardless of age (I am 23), sex (I am male), or ethnicity. The medical textbooks for this illness need to be updated to reflect the latest studies for the sake of helping patients with an exceptional or unusual presentation of the GCA illness.
I have not had the IL-6 plasma blood test yet and no doctor ever suggested it to me, which is just unacceptable. I need to have this test done to help doctors treat the illness, and the doctors I have seen are just not educated enough about this illness to know how to manage patients with unusual presentations of the disease. I will urgently request my primary care doctor to order this test for me, and I suggest everyone else does the same for the sake of educating doctors and providing clinical evidence in the medical research journals to help diagnose others in the future.