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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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@katclub
Hi Carol:
I give the Actemra injections for my GCA in my abdomen, and have had no issues at all with it. Not sure why you had that tingling sensation in your calf after having your injection in your thigh, other than possibly you hit your sciatic nerve by accident in the process. (?)
You might want to try having the injection in your abdomen next time and see if that suits you better. (3 or 4 inches from your navel and be sure to reverse sides each time).
With regard to your upcoming eye surgery, I can put your mind at ease somewhat. I've had four eye surgeries, (not related to GCA), so I certainly understand your nervousness. It's not nearly as bad as you think , so try not to worry about it too much. The doctor will likely put a nice cushy pad over your eye to magically freeze it, and you won't feel a thing! Let me know how you're doing with all this. I know it's worrisome for you!
Wishing you well. Laurie
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1 ReactionMyself as well. I have had PMR for well over a year now and been on Prednisone since Jan. 2022. Was tapering nicely when the jaw and head pain started on or about Jan. 21/23. Went to ER. They got hold of a Rheumatologist on call. She put me up to 60 mg. Prednisone and after 2-3 days the pains subsided. Then saw my own Rheumatologist who said biospy was inconclusive and started reducing the Prednisone to 50 mg. Needlesstosay, the pains were back within 3 days. Could not reach her (never can) and so went back up to 60 mg. for 5 days now. Seems to be alleviating so much of the pain and I will not start tapering yet. She is a "let's get down to 1 mg. as fast as we can" person. However, sleep is escaping me. Waking up around 3 and that's it for the night. I also have a sciatic nerve issue at the moment and Prednisone does not touch that, so Ibuprofen/Tylenol is my go to, but of course it's affecting the stomach. Darned if you do or don't. Went to Ophthamologist on Jan. 24. He could see no significant change in eyes; only that cataracts had grown and wee bit. Optic nerve looks good. Have a follow-up with him end of February. A little worrisome for me is that I've been a little out of breath, shaky particularly in the mornings (enough to make me sit down) and of course extremely fatigued and if I could actually get hold of my Rheumatologist I might also need some tests done for heart/artery issues - or not. All the best Laurie. ~ Deb
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2 ReactionsGood news on the Actemra. Just one word of caution reduce Prednisone very slowly. Once I got to 20 which I was on a very long time I reduced by 2.5 and it would take a couple of weeks before I felt OK. I have bruising on my lower legs all the time. GCA is a vasculitis, and I had a tendency to varicose veins.
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2 ReactionsSo I started at 60. Wanted to go to Mayo but couldn’t function at 60 so Doctor reduced to 40. Got to Mayo ok and continued to reduce real slow. Long time on prednisone. But you don’t have to d o 60 for long. It’s tough.
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2 ReactionsHow many months were you in 60?
I am so hoping my sed drops in a month.
Thank you
Did you have vein issues before? How long were you on 20?
Not even a month. ESR is not the end of the world. I just got over Covid and my ESR went. Up to 115. This kid now 9 years later. At first I was scared but no head ache or other symptoms and I’m just watching it. Also went up to 20 for a week and now at 12.5 of prednisone. There should be a better way to contact me. Don’t always check Mayo. Marilyn Redder
I was on 20 about 5 weeks after starting on Actemra. Always go by your blood tests. I have had vein issues for a long time due to unlucky DNA
Thank you, I appreciate your input.
No private contact? I can give my email?
I did not know no private contact. I would not like Mayo to kick us out of the website. It is a very good one. Let’s think on this