Hi all,
I feel a bit silly asking but, I’ve had a painful scalp for the last week. The only way I can describe it is like when you’ve had your hair up for a long time and when you take it down it’s sort of hurts. Does anyone know what I mean?
I’ve tried massaging, washing etc but nothing helps.
I was wondering if it’s a side effect of Prednisolone?
any advice would be greatly appreciated
X
I think I would want that checked out for GCA - is it all over or in specific place? Does massaging or washing it make it more painful?
Hi thank you for responding.
When I rub or massage my head it doesn’t make it feel better and the pain intensifies at little. And it’s mainly halfway up the right side, top of the head and goes down the back of my head. Sometimes it’s tingly. I know absolutely nothing about GCA but assumed that it was pain in the jaw? Is the head pain a symptom of GCA then? I also thought that because I’m taking Pred I wouldn’t get GCA, and I wrong about that too? Should I mention it to my GP then?
Hi yes wrong on both counts - GCA covers entire head, and sore scalp is typical…[certainly was for me] - and as GCA requires much higher doses than PMR [plus 40mg] it doesn’t guarantee you won’t get GCA.
Definitely mention to GP… and asap - please…
I have LVV rather than GCA but a lot of my symptoms were head related. Hopefully your GP is on the ball. But you should mention that you are aware of people with PMR going on to get GCA. You would need higher doses of pred if it is GCA/LVV. Or as Fran Benson says, ring the Charity helpline. If you're not a member, maybe this is a good time to sign up. Let us know how you get on.
How does your pillow feel? As DorsetLady says it could be GCA brewing and I certainly had this on the sides of my head. Massaging wasn’t very pleasant. However, I have had this when my hair is about to shed over a wide area. I had this a few months after diagnosis, during adrenal insufficiency and after a few Covid infections. Do you have any other head symptoms?
I have a mild pain in my right temple. It’s not there all the time . I also feel as if I’ve been hit in the eye, again right side. It doesn’t hurt to touch or anything like that and again not there all the time. As I said to DorsetLady I haven’t a clue about GCA and don’t know what to look out for at all. I just assumed that because I was taking steroids I wouldn’t get GCA.
Just for info - this in an account of what symptoms other members had with their GCA - and your doctor should have told you what to be looking out for -
healthunlocked.com/pmrgcauk...
Thank you 🙏🏻 I’ll have a read now. I’ve just contacted my GO too so I’ll see what they say when they get back to me. Thanks again ☺️
This is quite a simple explanation-
myacare.com/blog/what-is-gi...
It may not be GCA, but certainly it needs checking - please keep us informed..
All your symptoms in your replies are typical of GCA with variations between people. Prompt medical opinion is needed not just because of this but also for the possibility it is shingles. I had head shingles recently but got on antivirals within hours with good effect. My first symptom was prickly scalp and a punched in the eye feeling. I had similar with GCA but because of that I could tell the difference because I could compare.
Thank you, I’m waiting for a response from my GP, I’m keeping my fingers crossed I’ll hear something before the weekend. X
If you get any odd visual symptoms seek urgent advice. I mean things like, double vision, dark spots or areas, flashes of light, sparks, distortion, greyness of vision even if it is intermittent and short lived.
Will do, thank you 🙏🏻 x
You can also give our helpline a call on 0300 111 5090 and would very much recommend that particularly if you don't hear from your GP today. A new or unusual head pain/sensation is a classic symptom - you don't need to have jaw pain as well so it's worth getting it checked as soon as possible.
thank you x
I know exactly what you mean - luckily I only had it for a few months and it disappeared. But scalp pain is a listed symptom of GCA though there are other things that could cause it.
Do you feel generally unwell? Sweats? Anything else unusual - even if they are things you might usually associate with thyroid.
We are told to attend our emergency area at hospital here in Australia with these symptoms to rule out CGA in the first instance.
you are describing my symptoms for GCA with the sore scalp and then I get a pain on each side of my head!
These are exactly the symptoms I had prior to being diagnosed with GCA. I also had jaw pain but the scalp pain and tingling had been there for much longer than the jaw pain.
Head pain such as yours is a definite red flag. I had PMR that then went on to become GCA. After a week of constant headaches and scalp soreness that painkillers wouldn't touch, I went to see my GP. He knew what it was immediately and put me on 60mg of Pred, to be started that day!
So don't wait till after the weekend. If you don't hear from your GP today (Thurs, 19th, Dec) then go to your nearest A&E and tell them you think you may have GCA. They will treat it as an emergency, because it is. If you don't get it treated immediately there is a very strong possibility you could lose your eyesight !!
That wouldn't be a very nice Christmas present for either you or your family, so please seek help NOW!
what about Shingles?
Sore scalp, which varied in area, which went on for several years. I have very long hair which I tie up from time to time, so put the soreness down to that. Also sharp pains in my ears for a few weeks. No headache or visual disturbance. Went to GP to ask whether I could try gabapentin or pregabaline for my increasingly troublesome fibromyalgia. She immediately suspected GCA & I collected my steroids on the way home. Biopsy confirmed GCA 2 weeks later. 14 months prior to this, I had a thoracic aneurism & life-saving surgery. I so wish I hadn't delayed going to my GP.
Margie that is a classic sign of GCA - I had been on antibiotics for a week in 2020 for sore head when I saw the doctorand said 'now my hair hurts'. He immediately said that I had GCA - and he was right.
I have GCA and that was one of my first symptoms. Feels like It’s bruised. I’m taking Actemra only at this time. I would get checked for GCA.
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