Giant Cell Arteritis Diagnosis

Posted by oztrax @oztrax, Mar 24, 2023

I think GCA is a better name than Temperal Arteritis, as it affects more than just head arteries.
This last week I’m sure I have this condition, after 2 years of tests, specialists and a few thousand dollars searching for a diagnosis.

Fatigue isn’t the right word, it’s more like complete weakness in all my muscles and body. Have lost 12 kgs without even trying.
I was 56 years old when the fatigue started, 6 months later then inner ear vertigo, tinnitus and ear pain. Eg climb a ladder and vomit a few minutes later….ENT said it was Vestibular Migraine, with no cause or treatment available, but vestibular testing showed hydrops (inflammation in inner ear) .Migraine headaches were unbelievable.
Was bed ridden with this for 2 months then another 6 months before getting back to work full time.

End of last year I had GI issues, painful shoulder and lower back pain for no reason.
Around this time noticed tender scalp, which was very painful around right temporal region. Told the ENT about it and he said it was just muscular, nothing to worry about………
Last 2 months bad shoulder pain in both shoulders , minor pain both hips and both elbows. Looked like PMR, also had elevated liver enzymes, urine tests always showed dehydration and low Uric acid.

Also suffer from Psoriatic Arthritis which has been severe in the past affecting my fingers and toes, take Arava (leflunomide) daily for this, had been on methotrexate and sulfasalazine before this over the last 10 years or so.

So last week my scalp was so sore it was stinging around the right Temperal and right occipital areas. I was researching PMR at saw GCR mentioned and knew that’s what I must have.

Will have a temporal artery ultrasound next week, but I think they should also ultrasound occipital and frontal lobe areas as these are painful as well.

My question is : in my case this has been a slow progression of this disease , which is atypical and some of the symptoms previously where not always present . Also up to 2 months ago , blood tests were normal.

Maybe the Arava/Leflunemide and previous methotrexate slowed down both the onset and progress of the disease and hopefully I don’t have any permanent artery damage.

What are your thoughts and advice

Regards
OZ

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

DadCue | @dadcue | Mar 26, 2023

In reply to @johnbishop "@oztrax, Here's some information you might want to discuss with your GP if you can't see..." + (show)

Thank-you @johnbishop

This is a GREAT link because it points out that diagnosing PMR/GCA is one thing and treating PMR/GCA is another thing. Here are a couple of excerpts that stand out to me. These excerpts point out that historically, when PMR/GCA was treated with prednisone, it was never "targeted."

"Glucocorticoids (GC) are the standard treatment for GCA and PMR. Unfortunately, GC-related toxicity occurs in up to 85% of patients.1 2 In addition, many patients have pre-existing comorbidities that may worsen with GC therapy. Moreover, the prevalence of symptomatic disease relapse is high: in cohort studies, 34–62% of people with GCA and/or PMR were reported to have at least one relapse.4"

and

"Up to now, T2T is not a recognized treatment approach in GCA and PMR, and to this point there has not been a systematic evaluation and consensus finding process on this topic. The development of T2T recommendations for GCA/PMR, therefore, addresses a current unmet medical need.12"

I look forward to the day when prednisone IS NOT the only option! It does seem like PMR/GCA is getting the attention needed to make some progress.

Teri | @tsc | Mar 26, 2023

In reply to @oztrax "My last post didn’t appear here, I replied to Teri” but can’t find my post. Last..." + (show)

Is it possible for you to get a referral to a rheumatologist, @oztrax?

oztrax | @oztrax | Mar 26, 2023

In reply to @tsc "Is it possible for you to get a referral to a rheumatologist, @oztrax?" + (show)

Thanks Teri,
I have been seeing rheumatologist for nearly 20 years, but only twice a year, for quite serious psoriatic arthritis, (in remission),last saw a rheumatologist 2 months ago January on the 19th, but my ESR was 4 and CRP was 0.7. My main symptom was fatigue, but I should of mentioned the scalp pain which at that stage was not always there, being unaware of GCA I thought it was a bump on my head or my hat/ear muffs which I wear a lot at work. My bad.

I am really showing all the symptoms over the last week, it has happened quite quickly. The constant headache started last Friday, so only a few days.

Thanks for you concerns, see my doctor tomorrow and hopefully start prednisone right away.

Regards
Dale C

oztrax | @oztrax | Mar 27, 2023

What sort of side effects have you people had taking 60 mg prednisone ?
And at what level after tapering did side effects decrease ?

I am type 2 diabetic so also was how much blood glucose levels were effected .

Also I have had bad diverticulitis in the past , had to have a hemicolectomy to remove sigmoid colon due to fistula between colon and bladder.
Concerned that may preclude me from taking TCZ.

As I am younger than a lot of you at 58, I am still working full time , can only have limited periods of sick leave.

So I need to get my head around the next few months to see how long it takes to improve my symptoms.

Regards
OZ

DadCue | @dadcue | Mar 27, 2023

In reply to @oztrax "What sort of side effects have you people had taking 60 mg prednisone ? And at..." + (show)

I used to self medicate with prednisone but I had my own personal limits. You will need to figure out how much you can tolerate based on how you feel. My personal self imposed limit was 60 mg when the pain was unbelievably severe. My doctor ordered a maximum of 100 mg to me because he knew I couldn't tolerate any more than that.
https://www.drugs.com/medical-answers/considered-high-dose-prednisone-3561211/#:~:text=by%20Drugs.com,the%20person%20and%20the%20condition.
This website is accurate and doesn't exaggerate the side effects of high dose prednisone. If anything, it doesn't mention many other side effects

What I considered a high dose for me was only for a week or so. I needed to reduce the dose soon because I couldn't tolerate a high dose for very long.

downtowner | @downtowner | Apr 9, 2023

I’ve seen conflicting comments about doing weight bearing exercises when one has GCA and on Prednisone. One comment is not to do weight bearing exercises and the other is to do them because Prednisone weakens the bones. Which one is right?

runningfree | @runningfree | Oct 29, 2023

So 2016 was a horrible yr. I take my son back to the airport to and my temple on my right side of my head like exploded. It swelled up to where it pushed against my glasses to where I could not wear them. I goto ED and he tells me to see a EMT if his meds didn't help... they didn't which he knew . The EMT said I needed surgery on my sinuses but that the swelling was not from them... that it was this arterial arthritis....and I needed a different dr now but he started me on steroids right away. That took it down. That new dr was mean. He said he didn't see the swelling....I couldn't get in to ti see him foot 2 weeks and yup the swelling was gone. And since I had no signs, and I was too young he didn't want to do the surgery. He did it but it cane up with no signs. And blood tests the same. Now since he did the surgery when that swells it doest swell as bad on the outside but it swells on the inside pushing against my eyes. I have not gone back to see that Dr but has anyone else have this or is this in my head?
And I suffer from migraines and during this time I was seeking help from then as well. And had a Mri of my head and the findings were I had only 1 communicating artery instead of the 2... is this normal 🤔

Colleen Young, Connect Director | @colleenyoung | Oct 29, 2023

In reply to @runningfree "So 2016 was a horrible yr. I take my son back to the airport to and..." + (show)

@runningfree, I moved your post about giant cell arteritis to this existing discussion in the Polymyalgia Rheumatica (PMR) support group.

- Giant Cell Arteritis Diagnosis: https://connect.mayoclinic.org/discussion/giant-cell-arteritis-diagnosis-1/

I did this so you can read previous posts and connect easily with fellow GCA members like @oztrax @katclub @tillysam @khmc @artist01 @tsc and many others.

Are you looking for a new doctor? How are you doing?

runningfree | @runningfree | Oct 30, 2023

In reply to @colleenyoung "@runningfree, I moved your post about giant cell arteritis to this existing discussion in the Polymyalgia..." + (show)

Was looking for I guess if anyone else experienced anything like that. Not sure what to think. I know it's still swelling at times but it's on the inside but I feel stupid complaining about it. I saw 3 other doctors that year and got different answers to what I had. I symptoms all showed the temperial arthritis but the tests didn't back it up. One doctor told me it was reminisce of my shingles that I had 7 yrs earlier... and one said no it's definitely sinis, the ent said no on that one and he did the surgery on my nose and both sides and yeah that was horrible. Now I have a nose spray I use every day because the surgery didn't work. I am going blind and the right side is the worst. And that's also the side the migraines are normally on.