I don't believe I've asked this question or seen any mention of this subject. GCA diagnosed fifteen months ago. I can't see my scalp however others can see small pink areas on my scalp corresponding with the current location of my pain. Generally in three to eight locations. Sometimes redder than others. At the moment, slightly darker spots. Just curious. Is this a common occurrence with GCA ? Or am I the only one ? Thanks in advance.

11 Replies

  • I have heard of spots on the scalp and everywhere else as well.  I have lots of red and purple bruises but so far none on my head. I have had GCA since July 2015. 

  • Hi cj, I have had skin probs since GCA in 2014. Just assume it is post-pred effect? GP gives me uticaria pills which barely keep it under control, but gets quite noticeable at times. Lesser of some evils though, so just grin and bear it in Club Zero! Good luck with yours. Raymck

  • Hello, I have had GCA since 2012, just down to 1 pred a day. But suddenly a couple of months ago, I got a very itchy rash, and on my scalp. But these are spot like then get a sort of hard top (sorry hard to explain) I have been given Steroid cream, but Dr doesn't seem to know what it is, had blood tests all OK, but it is driving me mad. Horrible They say could be Steroids, or a reaction against chlorine, (I started swimming)?

  • I have a similar itchy spot (with crusting)  on my scalp. Turned out to be dermatitis. I was prescribed a steroid based cream which calms the itchiness almost instantly. Unfortunately, the itchy spot is very stubborn and has never gone away completely.

  • Grimo, I have been on pred since 2012 for PMR and over the last two months I have developed spots on my scalp which, like yours have a hard top and I find myself worrying them and taking the tops off. Also a very flaky and itchy  scalp which is new and Head and Shoulders does nothing to help. I think it must be the pred.

  • Thanks all. I have had some of the spots you're referring to. Especially, the small raised red ones on chest, neck, etc. Like little moles. Also, lots of new skin tags.....I'm sure those nasty little things that are growing are from the Pred.

    The spots on my scalp are directly connected to the pain. They aren't raised nor is the skin changed in it's texture. Maybe, they could be described better as something like a bruise....only in shades of pink. Even though I can't see them, I can point them out. Even moving the hair follicles at these points causes pain. I picture an inflamed artery touching a nerve. Of course, that's just in my mind's eye.

    My hairstylist easily finds them with no assistance. Gently moves hair around and reports on which ones have more color. She's always right ....the more color, the more pain.

    Grimo, congratulations on your tapering accomplishments. That's wonderful.

  • My Mother had pmr and then developed a head ache she described as like  being hit over the head with a sledge hammer. We went to an out of hours Dr who raised her steroids and said to go and see her own GP. There were red marks where on the top of her head. Her own Dr and another had never seen any thing like it. At the hospital several people walked in to the room to look at Mum's head. It was suggested they did a biopsy and it turned out to be GCA. I always correct the rheumatologists who tell me you get raised arteries at the sides of the head and tell them it can be on the top of the head too. My Mum was so rare they wanted to take photo's for training purposes, it seems they have'nt learned anything in the nine years since she died.

  • Thank you Bailybiscuit. You are the first person who seems to have any knowledge of what I have described. One of my first symptoms.....two years before diagnosis of GCA was scalp pain. Very painful. After looking at drawings, I've seen there are superficial temporal arteries traveling up to the top of the head and even toward the forehead.  Since I can't see them....it amazes me that others ( Hubby ) can. Hubby, also, says I never have anything normal. Always something rare.  Guess I've done it again. Always helps to have someone validate an experience. Thanks again, CJ

  • It is amazing I even told my own Dr about my Mother as she told me GCA affected the arteries at the side of the head.We shouldn't have to teach the doctors. I have to say that since I developed pmr I am far from normal with my symptoms. My Dr says I am A typical.

  • I am considered A Typical or simply not believed. Until this, I really didn't run to the doctor all the time. However, after suffering for some time with fibromyalgia......it seemed I was a pain in the arse ! Not all docs believed fibro was real. Add to that, a record of taking an anti depressant . I'm not taken very seriously.

  • Seems like there's a lot of a-typical people around. Doctors surgeries are full of them is seems!!!

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