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Giant Cell Arteritis Diagnosis
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
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@momokelly1 I started Tyenne in January and just had an episode of mild diverticulitis. I don't want to find out what a moderate or severe case feels like. They took me off tyenne (Actemra bio-similar) and I'm waiting to see what's next. Keep us updated and I'll do the same. I'm still on 10mg Prednisone, just started tapering.
@elleninz Only Actemra/Tyenne and Rinvoq are FDA approved for GCA. That is why I was put on Tyenne. Rinvoq GI risk is about the same, just a little less. I just had a GI episode on Tyenne and am waiting to see what they decide.
Prednisone is about the only other drug used to treat GCA and it is not approved for GCA. Very limited drug choice.
@kittykelly1234
Wouldn't the doctor who prescribed the tyrene be able to assist you with your first shot?
@kittykelly1234 I was given the scorched earth treatment of 3 consecutive days of 1000mg solumedrol (prednisone) iv. At the time they diagnosed transverse myelitis, because it was a neurologist that ordered the MRI and brain swollen. But she left town and I wasn’t followed. I too developed diabetes from the massive prednisone treatment and my body went haywire, in so many systems. Then I was in a hospital for seizure study, had the most ghastly facial and head pain Ive ever had…but they were just concerned with it not being a seizure and said it was “just” a headache. Then I was in ER for horrible shoulder pain and weakness, couldn’t walk, and as soon as they ruled out stroke they discharged me. I finally got into a rheumatologist who immediately knew I had PMR. …and more. I’m on a course of prednisone but it wasn’t high enough to handle the GCA and my vision deteriorated. I go back next week and will be discussing much with rheumatologist.