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.
"I have not had the IL-6 plasma blood test yet and no doctor ever suggested it to me, which is just unacceptable."
Don't get too hung up on an article suggesting "the IL-6 plasma level is perhaps the most sensitive blood test that would indicate GCA in untreated GCA sufferers like myself."
IL-6 is raised in many many illnesses:
"Besides being an immune protein, it is also a pyrogen, and is responsible for fever in autoimmune, infectious or non-infectious disease. It is produced in the body, wherever there is inflammation, either acute or chronic. This includes situations such as trauma, burns, cancers and infection. It interacts with interleukin-6 receptor alpha, to induce transcription of inflammatory gene products.
Interleukin-6 is implicated in a host of chronic disease conditions associated with inflammation. Interleukin-6 is also suspected to cause increased susceptibility to diabetes mellitus, and to the systemic form of juvenile rheumatoid arthritis.
Interleukin-6 is released by monocytes and macrophages in response to other inflammatory cytokines which include interleukin-11, and tumor necrosis factor (TNF)-beta. The IL-6 receptor is present on normal T-lymphocytes in the resting phase, normal activated B-cells, and cells in the myeloid and hepatic cell lines. It is also found on B cells modified by the Epstein-Barr virus."
Finding a raised IL-6 is not really going to diagnose GCA any more accurately even if it might increase the suspicion whatever that article suggests. Sensitivity is one thing, specificity is another unfortunately. Far more useful probably would be the routine use of TAUS - temporal artery ultrasound which is as good if not better than TAB in diagnosing arteritis where the temporal artery is involved. But GCA presents in a whole range of ways and doctors aren't always able to recognise it in the same way they recognise chicken pox.
You are an extremely atypical patient with an illness that is rare anyway even amongst the older generation where it is more usually found, it has orphan disease status. It really isn't surprising that your doctors haven't put GCA to the fore as a possible diagnosis - and that is the point, more than whether another blood test would tell them. Educating them as to the signs and symptoms, that 1 in 5 patients don't have raised ESR/CRP, that it does appear in patients younger than 50, perhaps less often but less often isn't never, is what has to be done. But you cannot blame doctors for not recognising something that is perhaps 1 presentation in hundreds of thousands.
Like you, I do hope that the TAB does show giant cells - because that is the only sure answer for anyone. If it is positive, what you really can achieve that will be a great help to those of us in the charities who form an interface to the medics doing some of the research is persuade your doctors to write a paper about you and get it published in a rheumatology journal that is widely read. It must be brought out into the public domain that YOUNG PEOPLE CAN DEVELOP GCA - there is a media report about a 37-year old in the UK where it was established at autopsy but things like that are not in the journals that doctors read. It isn't the textbooks that need updating - it is the publications in rheumatology journals because they are published every year, textbooks are re-edited every x years.
Thanks again for your contributory response as always. I like to see the perspective of others in understanding what options we have for diagnosing illness. For me at least, the very fact that my ESR and CRP were normal, that every scan I had was normal, and that I was such an atypical patient outside of a normal age range for GCA, made it very difficult to convince doctors to help treat me properly. I kept telling them again and again that their regular headache medications were not working and that I was feeling sicker and sicker with each passing day. Even in the hospital I went to I was told I had a psychiatric problem because no doctor could figure out what was wrong with me. I was literally told "according to our tests, you are not sick, and we are going to discharge you and give you a referral to a ment health hospital." I was absolutely stunned and frustrated beyond all belief, and meanwhile suffering physical pain like no other without any relief. I asked them to give me prednisone and they refused to give me any saying that there was no way I had any autoimmune condition from my blood work. It just pissed me off frankly. Doctors go through more than 8 years of school to be able to diagnose conditions, and honestly, they should not take this power lightly. I do blame doctors for being unable to help me because it is their very job to do so, end of story. I don't care if it's a rare condition. I honestly had every symptom of GCA and explained this to the physicians at the hospital I went to. A doctor, especially at a renowned research hospital in NYC where I went, needs to cover all bases when trying to find the cause of an illness, especially after completing all of the standard tests and finding no visible indications of illness. At the very least, they should have treated me with more respect and not brush off my condition as something trivial. Sorry for the vent but it is just unfair for anyone to have to go what I endured. I literally had to treat myself by begging for steroids and then begging a surgeon to perform a temporal artery biopsy. That should never happen in a world where a doctor can think outside the box.
In addition, as to the IL-6 use in blood tests, I have been tested (negative of course) for many, many infectious agents that could elevate IL-6 plasma level. I do not have arthritis or any systemic autoimmune illness (confirmed by blood test). I don't have cancer and I don't have any rashes or burns. The point of the blood test would be to steer doctors in the right direction towards confirming a diagnosis. If everything else is negative (and believe me I have had almost 20 different blood tests in the past 8 months ruling out all kinds of possible ailments), then the one positive result would at least tell a doctor I have an inflammatory problem and point them in the right direction instead of them just saying that I have a headache condition and should go to a headache clinic. Information is power and the more a doctor knows, the more he or she can help you.
Hi Devin. I can begin to understand your frustration and I only had 4 months of tests and scans before GCA was diagnosed. Like you I suffered from severe headpains. Biopsy was clear, ESR low but CRP raised. Was given Pred which stopped the pain but as tests were negative they put me on Pregabalin and once I had tapered down on Prednisolone the pains returned. The Pregabalin had no effect on the pain just zombiefied me! So I begged my Rheumy for more tests. He did a colour ultrasound scan of my head,neck and armpits and found something. He sent me for a PETCT Scan and found inflammation in the Aorta Arch and Subclavian Arteries. They can't detect Giant Cells without a biopsy but the inflammation was good enough for them to diagnose GCA. So a definite diagnosis for me was with the PETCT scan,they could actually see it, so far better than any blood markers. Good luck. Hope you get a diagnosis and the right treatment soon
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