I've had GCA since December 2017 and a pretty smooth taper. From 60 mg prednisone I am now at 3 mg. I feel fine and my monthly blood work is normal. I have mild scalp tenderness at the top of my head which comes and goes after a few days. Is this a sign the GCA is still there ? I was hoping and my rheumatologist thought so too that I was in remission.
Thanks for advice.
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Hi Abbeys,We are all different, that’s what makes these diseases so difficult. For me, scalp tenderness is the first alert that a flare is coming.
Hello Abbeys, I too have the same symptom. I was diagnosed with PMR in May 2016 and GCA in September 2016. Initial dose of 60 mgs and like you down to 3 mgs.I would describe what I have as the feeling of a semi-permanent bruise on the top of my scalp. Probably a three inch square size. It isn't at all like the pain I had with the GCA, I can touch it and pull on my hair, with the GCA the feel of even gentle water in the shower or slight wind moving my hair was agony. I think what I have now is most likely due to slight nerve damage from the inflammation. I could be wrong of course but I am sure it is not GCA, it might be worth asking your rheumatologist for an opinion. I would be interested to know if it is a symptom many recovering GCA patients report, I haven't read about it before.
I do have sternocleidomastoid muscle problems which might also have some bearing on it but not convinced.
Let me know if you come to a conclusion.
Morning, I was diagnosed PMR in Dec 2019 and in March 2020 GCA. My first symptom was painful jaw when I opened my mouth wide, and tender head. I've suffered tender head on and off ever since. I recently had a small flare of GCA where I found my left temple was tender. I increased steroids up to 10mg (I'd managed to get down to 6.5mg)....it's the 6mg mark is when I experience problems. I was only put up to 40mg on diagnosis of GCA. Hope you manage your taper. I think tender heads could be a common problem as we age. I've heard people on the forum say they can't touch their heads due to the pain from GCA....mine never been that bad. Good Luck
Thanks for your answer. This is my 5th year of steroids and I am really hoping the GCA has gone into remission. I would feel that it had, if not for this scalp tenderness. Will see what my doctor says. Although I have gained much more insight into this disease journey from this wonderful site.
Yes, the ladies with knowledge of both diseases are a God send. They've helped e a lot with my inexperienced journey. Would you let me know what damage steroids have done to you. My hair is thin and wispy, but my nails are really bad. Lines running up them and near the bed of the nail there are sores and like I've said in a previous post I'm sure that the Paronychia, that I've now had for a few months is also to do with Pred. Three little water blisters at the bed of nail of ring finger. I've not been able to wear any rings now for almost two years, my fingers are so swollen. My eyes feel awful too, so heavy and weird feeling. All okay at the last opticians appt and pressures were normal, so that's a bonus. I worry big time about GCA as I only have the sight in my right eye (due to another illness back in 1994) so paranoid of GCA....so many have lost the sight in one eye, and one lady went completely blind. Mood swings have disappeared, which is such a good thing at the moment with having to look after hubby who's waiting for two new hips and is in agony.....just bought him a mobility scooter. He also has CKD (chronic kidney disease) from years being a type 1 diabetic and just to add to the mix he has macular degeneration too. So all in all a lot of stress going on right now. Trying to stay as calm as humanly possible to avoid any flare ups.
Anne
I'm sorry you are struggling at the moment. Stress is awful. I can relate as my 88 year old mother has macular, lives on her own with only me to care for her My prednisone journey seemed to have the usual problems. Blurry vision, cataracts, raised eye pressure, (I'm on drops), hoarse voice, thin skin, I still get those red bruises, thinning hair, trouble sleeping, weight gain with moon face ! I kept a diary of all the symptoms which has helped.
Best wishes to you.
You're relatively young then Abbey. Yep, all those you've mentioned for me too...forgotten about the fat face haha !! My fingers are so sore though. Do you feel shaky inside, but not visibly ?. I do it's horrible. Sleep bad too.
I don't feel shaky but sometimes I feel like my fingers don't work. I struggle to pick things up. I used to wake at 2am as regular as clockwork but am sleeping better now. I also used to feel like I was wading through cement but that's improved now. It's been a long 4 plus years but looking back, I can see a lot of side effects have gone. Hopefully the GCA has too.
Morning, If you're down to 3mg that's amazing. Your Adrenal glands have obviously kicked in......wish I was down to 3mg. Strange how some of us start with PMR then go on to get GCA, while others only get one or the other.
C’est la vie
Yes, quite so !! How you doing Sue ??
Good thanks - had my 2nd Shingrix vaccine this morning - now sitting in garden centre with cup of coffee! ☕️…
Excellent X
I get it from time to time in the crown due to having my hair too long, needing to wash it, neck muscle tension and sometimes just nerve irritation. Sternokleidomastoid tension can mimic a number of GCA symptoms and I’ve had a few scares due to this. My original GCA scalp tenderness was more unbearable, even cold wind hurt it, plus it was more on the sides and round the back of my head. However, it is tricky to know in the early stages.
I have occasional scalp tenderness and sometimes a line of pain from front to back (but I put that down to tension headache, rightly or wrongly). Jaw is occasionally stiff but really when I’ve had a long day - it’s generally gone by morning so again I put it down to stress….
It’s so difficult to tell 😞
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