Worried I have Temporal Arteritis

[Megchi]

Hello! At this point, I've lost a lot of faith in my doctors, so I'm coming here for advice. A little backstory: I have no known medical conditions. However, I've been sick since the beginning of March with extreme abdominal pains, dizziness, fatigue, general malaise, nausea, and sometimes a mild fever. I've been in and out of Emergency rooms and doctors offices with no definitive diagnosis. Anyway, about a month ago, I started to get jaw pain with a weird tingling sensation across the left side of my head. This eventually progressed into a headache, jaw pain, pain and pressure behind the eyes and a tender spot over my left temple over the vein there (though it does not look bigger, I can feel this vein whereas on the right side, I cannot). A few weeks ago, my vision blurred and I went to the eye doc. Sure enough, the prescription in my left eye changed and it had only been three months since my last eye checkup. When I described my symptoms, his first thought was temporal arteritis. He quickly backed up though and said I couldn't possibly have that because I'm only 27, but said he could order blood work if I wanted. As he has told me it was life threatening, I said I don't care about the odds, order the test! I believe it was the c reactive protein test, and it was negative for inflammation. Fast forward, I went to a neurologist who ran an MRI and found no evidence of what could be causing the pain or my eyesight difficulties (even with the new prescription, I still feel that I cannot focus). As of today, the headache has gotten worse. I get this immense pressure and pulling sensation in my temples when I lay down. The scalp tenderness is now also on my forehead (where a vein is located) and sometimes on the side of my head above my ear and towards the left occipital area. My jaw hurts, my neck hurts, and the spot on my temple has gotten extremely painful. I'm afraid to even touch it. It also feels as if my right side is beginning to develop it. Every time I mention TA to one of my doctors they kind of laugh it off and then move on; but when I ask what else it could be, they don't have an answer. My neurologist is now referring me to a different neurologist. In the meantime, I've been terrified! The other night I woke up unable to move or speak, with a tight squeezing sensation on the left side of my head. I'm not sure if it was real or a dream, but the left side of my face felt tight and weird for the rest of the day. I also just felt "off". Does it sound like I could have temporal arteritis? If not, what else could it be? Also, I have a prescription from a month back, of prednisone (20mg) that I was given with antibiotics for a possible sinus infection; I took one and it seemed to help but the pain gets worse after it wears off. Should I not have taken it? Does it mean I do have TA because it actually helped alleviate the symptoms? Should I keep taking it until my doctors can get with it? I truly apologize for the length of this. Thank you to whoever got to the end!

[Hidden]

Hi Megchi,

At age 46 I developed symptoms suggestive of GCA, also known as temporal arteritis ( jaw claudication, headache, blurry vision, bilateral hip and shoulder pain, weight loss and fatigue etc ). Low dose prednisolone really helped my joint pain but high dose prednisolone wasn't a wonder cure for my other symptoms.

3 years down the line I have just received a ( tentative ) diagnosis of Behcets Syndrome, a rare type of vasculitis. Like you I saw lots of different Dr's and had to travel all over the UK to eventually get some answers.

My experience is that all auto immune diseases share symptoms to a certain extent. Jaw pain/ claudication doesn't have to be caused by GCA. My headaches and visual disturbances turned out to be migraines, I now need reading glasses which I didn't before. Just because your CRP is negative doesn't mean anything ( mine was only intermitently raised.

Have you seen a Rheumatologist? Have they ran an auto immune screen ( ANCA, ANA, rheumatoid factor etc ). You mentioned sinus troubles, they are a fairly common occurrence with small vessel vasculitis.

There is a type of Vasculitis called Takayasu's Arteritis. It can cause similar symptoms to GCA but is prevalent in younger females. My only advice is keep asking questions and pushing for answers. Don't give up or be fobbed off. You could take the prednisolone for a week and see if it makes a difference but I would be cautious about taking prednisolone long term until you have a diagnosis as it can mask symptoms.

Above all good luck and I hope you get answers soon.

PS I hope they have done routine bloods ( FBC, U&E's, LFT's etc )

[Megchi in reply to Hidden]

Thank you for your response! I have not seen a rheumatologist yet, but after all I've learned and observance of my symptoms over time, I'm starting to think I need to do that. Im actually in the process of getting a new primary care physician, as the last one is so difficult to get an appointment with and when I do, is very dismissive and unconcerned. It's so hard to find good doctors in the US! I will ask this new doctor if they can run those rheumatoid tests on me.

Thank you for the suggestion of Takayasu's Arteritis. I had never heard of it. Reading about it, it makes some sense of the systemic pain and symptoms I've been having for the last couple of months. I've had things going on all over my body, so it would make sense if my veins in general were just not functioning properly and inflamed. I will definitely mention this to the doc and see if I can possibly get an MRA.

I really appreciate you taking the time to read my post and respond. Let's hope these doctor's can be as helpful! I'm just tired of being sick and not knowing why...it's terrifying.

[Hidden in reply to Megchi]

Megchi,

What you have to understand about Dr's is that they are taught, " if you hear hoofbeats think horses not zebras ", which causes all sorts of problems if you are a zebra!

If it's GCA then the inflamation will show at the back of your eye. Have you seen an opthamologist? The definitive test for vascular involvement of the eye is a fluorescein angiography, they inject a special dye into your bloodstream and it lights up all the small vessels in the eye.

I am not saying it's not GCA, just that they may have to cast the net a bit wider. Many types of vasculitis and connective tissue disease can potentially cause your symptoms. The past 3 years has shown me how complex this all can be.

[DorsetLady PMRGCAuk volunteer]

Hi Megchi,

Certainly a lot of your symptoms - fatigue, scalp tenderness, jaw claudication are indicative of GCA/TA. However, you do not mention. extreme pain or stiffness in your shoulders which I would expect, having been there. At your age it would certainly be unusual which is obviously why it was dismissed, but there's always the exception to the rule. There are also many people on this forum who didn't/haven't got raised markers but still have PMRGCA.

You say 20mgs helps the pain, which would also indicate it could be TA, but that dose will not be enough to save your sight if it is that.

You really need to get an answer soonest whether that be with your doctor or in emergency (from those terms I guess you're not in the UK).

From someone who has been there, and unfortunately lost sight in one eye, you must get it checked out. It may be something else, but better safe than sorry.

[Megchi in reply to DorsetLady]

Thank you for replying! I do actually have shoulder pain at times, on the left side, including neck pain. I also get pain in my left leg at times. In addition to the pain, it's sometimes just a tingling/numbness sensation. I even had one night where it felt as if my entire body was going to go numb.

I need to mention, though, that I also have a few bulging discs at the base of my skull, presumably from an auto accident I had 5 years ago. It is likely this could be the cause the neck and shoulder pain as well. I'm also thinking it could be something with my nerves...I'm just a hot mess, aren't I!?

You are correct, I am in the US! And let me tell you, the ERs here are terrible, at least from my experience. Every time I've gone, I feel as though I'm not taken seriously. They quickly screen you and send you on your way if nothing obvious and life threatening is going on. As for my doctors, they shrug off the mention of TA (except for the one eye doc who first told me about it).

I'm so sorry to hear you lost vision in one of your eyes! Did you have any warning signals of this, or was it just abruptly gone? Also, what strength of prednisone should one be on to prevent this?

[DorsetLady PMRGCAuk volunteer in reply to Megchi]

Hi Megchi,

Long story, but I'll try and summarise it. More if you read my profile.

Started with pains in shoulders, tested for PMR, came back as satisfactory. Dr decided frozen shoulder, treated for that for 18 months. Progressed to head pains as you described for about 6 weeks, then blurring in bottom of right eye started in evening. Three days later in AE when blurring covered complete eye, GCA diagnosed, started on 80mg to preserve other eye, then dropped to 60mg after two weeks.

Most people diagnosed, start on at least 40mg, which I why I say 20mg will not save your sight if your symptoms are GCA.

Difficult as it may be, I really think you need to go back to doctors and convey your worries about your sight.. Sorry can't be more help. DL

[Anna135]

I'm only 32 and I've been being treated for suspected GCA for the last year, so it's not impossible at all. My initial blood tests did not show raised inflammatory markers, so although my GP initially suspected GCA based on my symptoms, the idea was dismissed and it wasn't adressed again until 4 months later when my symptoms suddenly became extremely bad while I was travelling in Japan, and I went to a hospital there where I was placed on 50mg of Prednisone which I increased to 60mg about 2 weeks later.

[PMRpro Ambassador]

There is a version of GCA that is found in young people so do go back and push a bit harder - you need someone who knows rather more than the ER, a vasculitis or autoimmune specialist would be best. Is a Mayo or Cleveland Clinic consultation an option?

Keyes and the others have said most of it - but someone on one of the forums last week said she was diagnosed with Takayasu's arteritis in her 30s/40s but now she is over 50 the label has been changed to GCA. She asked her rheumy who said they were the same but they used different names at different ages (nuts or what?).

Take these references to your optician - one is about GCA in a 17-year old - he seems to be your best bet since he recognised the symptoms but it was age that changed his mind:

ncbi.nlm.nih.gov/pubmed/166...

There is also this about a 37 year old who died of a stroke - and had GCA

walesonline.co.uk/news/wale...

It is all horrible for you and I hate giving you such depressing links but you need it for a practical approach. If the pred helped so much it is a suggestion it is some form of inflammation causing it and pred is the standard medication for GCA.

You don't have to have the PMR stiffness symptoms DL mentioned in GCA - it is one symptom but I know a lot of people with GCA who never had any stiffness. The signs in the eyes Keyes mentions are also only present once the blood flow to the optic nerve is slowed/stopped and that sometimes doesn't happen in early stages.

But do please keep us informed how you get on.

[chockybuttons]

Hi, I get annoyed when doctors say patients can't possibly have certain illnesses cos of age! I'm 48 and have GCA, diagnosed in January this year, luckily my doc didn't say straight away what some docs may say, that it's only over 50's that get it'. I've heard of people my age having it, and of your age. Am on 9mg pred, head is getting better. Do feel 'off' a lot. Can understand you taking the pred you have, but it may cover up symptoms in blood tests etc and you may not get the right help (eventually!). As someone else said, don't get fobbed off, if you not satisfied, keep asking etc, good luck, sorry not much help to you, keep us informed

[reh2]

Have any of them heard of takayasu's arteritis? It's another derivative of GCA but classically presents in younger women of Asian descent and is also known as pulseless disease as it frequently affects other large arteries as well. Can read up on that. Another possibility is that you simply have a lot of tension in the muscles of your neck and suboccipital area that are putting strain on the neurovasculature that runs between the muscles (this is what causes tension headaches for example). Perhaps from stress, bad posture or even bruxism. Maybe having someone massage the back of your neck or do myofascial release techniques to relieve muscle tension will give you some temporary relief. Would need to be done regularly in order to allow the muscles to attain a more relaxed "muscle memory". Either way, something is irritating your temporal artery, whether it be some variant of arteritis or a structural problem.

[ashie1234]

did you eventually find out a diagnosis?