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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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HugInterested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.
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Saw a rheumatologist today and she put me on 60 milligrams prednisone. I have 6 imaging tests and last 2 showed narrowing of blood vessels and along with my high sed and creatinine numbers , 2 ct angiograms showed my blockage. The doctor said the tests showed I have gca and said I didn’t need a biopsy. Bloodwork every 2 weeks to see if inflammation numbers come down. Scared and just hopeful the steroids. Thx for listening.
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2 ReactionsThe steroids should work beautifully. Taper down slowly and with your rheumatologist you should be ok. Only the best to you.
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3 ReactionsI have had GCA since 12/20. Once the inflammation is under control, look at alternative meds. I started Actemra
with prednisone after 4 months gradually reduced prednisone to 0 in Oct 21. I chose Actemra as it is a biologic because I do not tolerate meds well, There are other options but steroids can cause bone loss etc so not something I wanted to stay on indefinitely. I am reducing Actemra gradually now one dose every 14 days. My rheumatologist does not feel I can go off meds completely at this time.
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4 ReactionsHi @katclub, a new diagnosis can be scary, but you're not alone as you can see from the helpful responses from @khmc and @tillysam. You might also be interested in these related discussions:
- Temporal biopsies to diagnose GCA: What's your experience?: https://connect.mayoclinic.org/discussion/gca-biopsies/
- GCA (Giant Cell Arteritis) and PMR (polymyalgia rheumatica) https://connect.mayoclinic.org/discussion/temporal-arteritis-1/
- Think I have Giant Cell Arteritis (or GCA) https://connect.mayoclinic.org/discussion/think-i-have-gca/
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3 ReactionsJust one more suggestion. Prednisone can effect the eyes causing Glaucoma. I have a Ophthalmologist who checks every six months. I have eye drops Travoprost.
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5 Reactions@katclub and @khmc:
My story is exactly the same as yours, @khmc, except that my GCA began in 2019 and was confirmed with biopsy, plus partial loss of sight in right eye.
I'm still on Actemra too, with injections every 14 days, following about a year of Prednisone.
Stick with your Rheumatologist, @katclub, and hang in there. The Prednisone will have you feeling much better for now, and your Rheumy might switch you over to the easier Actemra in the future.
I'm feeling almost normal these days!
Warmest wishes, Laurie
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3 Reactions@khmc, @katclub and @colleenyoung Not wanting to frighten you, @katclub , but as a new GCA patient, it's important that you heed @khmc's comment on glaucoma and GCA/Prednisone. YES, all true! I've got glaucoma now, which started a few years ago and has recently escalated rather quickly over the last six months. My Opthamologist first suggested I use OTC Systane gel 4 x daily, and later prescribed Monoprost to be used at bedtime as well because the eye pressure had risen. Last month, the Opthamologist prescribed yet another eyedrop, Azara, 2 x daily, and wants to see me again in only 2 months because my numbers had risen once more, in a short period of time. So now I'm using three kinds of eyedrops daily!
It's very important that you have regular eye care, @katclub.
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7 ReactionsThank you. My first Acterma injection tonight. Fingers crossed. Bloodwork in 2 weeks, taking the 60milligrams of prednisone too, hope that will be reduced in a month.
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1 ReactionThank you so much
I did my first Acterma injection tonight.
2 weeks bloodwork, then I’ll hope prednisone reduced in another few weeks.
I feel a tightness in my calf, with injection, I did it in my thigh.
Did you have Acterma issues?
Carol
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1 ReactionI’ll plan on seeing my eye doctor! I have a hole in my retina with something called an epi membrane on that eye, all this occurred after I did cataract surgery.
Scared to have the membrane sliced off😐 but I’ll have to do it so I can get the hole in retina frozen!
Appreciate your help!
Carol