Adjusting to life with temporal arteritis

Welcome back to Connect, @masonc. According to Mayo Clinic: "The best way to confirm a diagnosis of giant cell arteritis is by taking a small sample (biopsy) of the temporal artery." The article goes on to say " It's possible to have giant cell arteritis and still have a negative biopsy result. If the results aren't clear, your doctor may advise another temporal artery biopsy on the other side of your head." --confirming what you say.
https://www.mayoclinic.org/diseases-conditions/giant-cell-arteritis/diagnosis-treatment/drc-20372764
Diagnosis is usually made up of several tests as described in the article.

You've been living with GCA for while now. How are you doing? What symptoms or side effects do you find a challenge to manage?

My experience is described in detail, with charts, etc at :::
http://frontal-lobe.info/gca/gca.html I will update it, but with nothing important. I am now at 5 mg prednisone and GCA is not a problem.

Hello, I read your comment and I am 42 similar age as you, and I am desperate for answers as doctors aren't being to helpful. Here's my situation I got some type of awful virus they don't know of for a couple months and all kinds of horrible symptoms. NOW past 2 months I have had tension headaches right at the temple gradually getting worse over the past couple months. I have been not active at all furing this 3 month period (was in great shape before), but now if i try to do anything like walk 5 blocks or do anything little active i get tension headaches followed by TIA symptoms. (weakness in leg or arm, numbness in parts f the body), also I am experiencing jaw and neck very stiffness alot, and of course i have been very fatigued all the time, I have slight vision problems, nausea disoriented, etc. Now here's the problem all the doctors i seen say can't happen cause my age and the blood tests come back normal 2 times over 2 month period. I am quite positive it is this. I am wondering how you got diagnosed, I am desperate for info as my symptoms are BAD, any info would be grateful and might save my life

I am 42 yr old, living in toronto who is desperate to get info so I can get diagnosed. I have had the normal blood tests to check twice ESR and creatine and they 2 doctors say I am to young to have it, but I have all the symptoms and nothing shows on brain MRI. Current symptoms after a bad virus they don't know what was, tension headaches on temples gradually getting worse over the past couples and more frequent (few times a day), and sometimes they are followed by TIA symptoms such as weakness of numbness in leg, arm, hands, pins and needles in finger tips, little vision problems, now my jaw and neck are getting quite stiff are times, like cracking and popping, but the usual tension is on temples both sides, extreme fatigue, nauseous, light headed at times. I was very active person before this all 3 months ago, but now if i do anything with a little exertion i get tension headaches followed by TIA (stroke)symptoms.. doctors treating it like a joke cause of age and nothing shows on normal blood tests. Has someone gone through this where it hows normal on blood tests? I am scared to death to try to do do anything active now, and any info I would grateful as you might save my life. So I can go back to doctors to force them to test more.

Hi @dchandler7 and welcome to Connect! You may have noticed that I moved your post to this existing thread on temporal arteritis so that you can learn more about what others have said about their experiences with temporal arteritis.

I also wanted to share this discussion on Temporal Arteritis: https://connect.mayoclinic.org/discussion/temperol-arteritis-or-giant-cell-arteritis/

It must be frustrating having life-changing symptoms. I wanted to introduce you to fellow Connect members @captainkenny @charann2000 @654321 who have experience with temporal arteritis or giant cell arteritis and may be able to sympathize what you are going through.

@dchandler7 you mentioned specific symptoms that are occurring. One thing you said that causes them is exercise. Is there anything else that causes them? Or is there anything that helps them when they occur?

little scary now, because the the head tension is happening all the time now without doing anything. My ears are plugged (especially on the side i chew with I noticed)..it's like being on the plane and your ears plugged, but wayy worse. I am very fatigued to do anything now, before i had little more energy..blood tests say normal, but now I am learning by reading the blood tests are flawed for up 20 percent of people, (especially if you're under 50),,any info I would be grateful so when I go back to the doctor they are forced to look more..I am trying to be positive about it but i am having some pretty severe symptoms

Hi, @dchandler7. Along with my colleague @ethanmcconkey, I'd like to welcome you to Mayo Clinic Connect.

I'd like to share some Mayo Clinic information on temporal, or giant cell, arteritis https://www.mayoclinic.org/diseases-conditions/giant-cell-arteritis/symptoms-causes/syc-20372758.

Also, I'd like to introduce some additional Mayo Clinic Connect members who may have some input as you are dealing with head pressure, plugged ears, fatigue symptoms, jaw and neck stiffness, nausea and lightheadedness, among other symptoms, and are trying to get diagnosed. They may also have information on testing done by their doctors and the process of their diagnoses. Please meet @crhp194 @tinkerbell. @johnbishop also may have some thoughts for you.

My understanding, @dchandler7, is that you are feeling quite sure your diagnosis may be temporal, or giant cell, arteritis? Have your doctors looked into this as a possibility in your case?

Hi @dchandler7, I would like to add my welcome to Connect along with @ethanmcconkey @lisalucier and other members. I have PMR and my doctor asked me about pain around the temple and scalp but mine has always been with hands, arms, shoulders and legs joints. I have had different Sed rate (erythrocyte sedimentation rate) labs and my doctor took the time to explain what the test numbers mean. Mayo Clinic website has some good information on the test here:

Sed rate (erythrocyte sedimentation rate)
— https://www.mayoclinic.org/tests-procedures/sed-rate/about/pac-20384797

There are some conditions listed under the Accuracy of test results section that list some of the complicating factors for test results. Have your doctors explained the test results and mentioned how it may apply in your situation? Is a second opinion an option for you?

John

It’s Captainkenny. Have not been active on Mayo Connect for several months now for a couple reasons: GCA (temporal arteritis) sharing morphed into lots of exotic autoimmune diseases beyond my interest, and I was really turned off be several posts from obviously non-medical professionals, offering medical advice, which is irresponsible.
I was fortunate to have been quickly diagnosed and confirmed by biopsy with Temporal Arteritis only two weeks after my symptoms—headaches, tender to the touch forehead and temples, and jaw pain so intense I couldn’t chew my cereal. That was 16 months ago. Started on 40 mg Prednisone and symptoms were gone in 2-3 hours without return, except for two minor headache scares. Now down to 7 mg Prednisone and Methotrexate, see RA every 4 months and blood lab every 3 months. I’m 82 and workout at gym most days and walk an hour every day, so I’m grateful exercise doesn’t cause me problems because it’s been an important part of my lifestyle for many years. Good luck to all you GCA afflicted and stay positive.

Hi @captainkenny, I'm glad you you came back and joined the conversation. Like you mentioned, none of us here should be offering medical advice - we are not doctors or medical professionals. All we can do is like you said is share what treatments work for us and learn as much as we can about our own health condition. Thanks for coming back into the discussion.

John