1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

Scalp pain

Posted , 9 users are following.

Sheilamac_Fife
Sheilamac_Fife

Is the scalp pain in GCA constant? Sore to touch? Painful when you move your hair from the roots?

0 likes, 10 replies

10 Replies

  • archprofUSA
    archprofUSA Sheilamac_Fife

    Posted

    In my case, my scalp hurt when I brushed my hair, touched my scalp, or lay my head on a pillow.  I did not have constant scalp pain. 
  • karenjaninaz
    karenjaninaz Sheilamac_Fife

    Posted

    Sheila, I am terrified of GCA so every time I had a passing ache head or temples I rushed to the doc.. Both my rheumatologist and my internist, who is a rheumatologist, told me transient aches and pains were not serious it's when they are continuous and I feel ill that GCA is suspect.

    There were times I had transient temple feelings passing scalp pains in different areas I ran to the doctor. I suspect GCA is a severe form of PMR. It seems to me that the same blood vessels which are involved

    in PMR are involved in GCA but in a more severe form. This is not scientific but I seem to sense that is the case. I wonder if going down on the pred too quickly can cause GCA to emerge?

    Eileen, any thoughts?

    • stella-dk
      stella-dk karenjaninaz

      Posted

      From what I have read PMR is in the small blood vessells and GCA is in the big ones. I think Eileen will explain it better when it is daytime in Europe. If you get enough pred there is no need to be afraid of GCA it also go into remission and a bit sooner than PMR from what I have heard.
    • EileenH
      EileenH karenjaninaz

      Posted

      No - reducing the pred fast won't cause GCA - nor will being on pred won't stop GCA if the dose is a PMR-type dose rather than a higher one. Though there are doctors who think under 10mg will stop you having GCA  - not so.

      The difference is very probably in there being different sized arteries involved - GCA is what is called a large vessel vasculitis, it affects larger arteries. it isn't entirely clear what the details are of PMR but probably the very small blood vessels are involved. 

      Jo says "GCA is more in the temples" - no it isn't! That is apparently the case and it seems to confuse doctors no end. The reason it seems to be there is that that particular artery is close to the surface, can be seen when it is swollen and is easy to biopsy. GCA can affect any realtively large artery with an elastic component in the wall - and anywhere in the body. But you can't biopsy the aorta without major surgery so it isn't done except during heart surgery or during post mortems. You can have GCA that affects blood flow to the optic nerve (which is the biggest risk) without any of the "typical" GCA symptoms, each of the symptoms inexperienced doctors say are a "must" for it to be GCA appears in less than 20% of patients who go to their doctor!

      Having a negative biopsy doesn't mean you don't have GCA - there is a lady on another forum who had headaches and other usual GCA symptoms but her temporal artery biopsy was negative. A top rheumatologist who has written about it enough to know better told her the fact that the biopsy was negative meant she definitely didn't have GCA - but she still had really bad symptoms that had improved with pred so she insisted on further investigations. A PET/CT showed she had large vessel vasculitis in the aorta, pulmonary and brachial arteries, all in the chest, but her symptoms were the same as "typical" GCA, headaches especially. They can't say it is GCA as for that you have to do histology and see giant cells - but you can have other sorts of inflammation and that was obvious from the PET/CT.

      In fact, GCA affecting the temporal artery is more likely to have scalp symptoms - and like any symptoms, it all depends on how badly the blood flow is affected. The headaches tend to be unremitting but the scalp pain may be there all the time or come and go. Pressure on the scalp often hurts a lot more - when brushing hair, lying on a pillow and so on. 

  • jo42444
    jo42444 Sheilamac_Fife

    Posted

    I too used to run to the doctor GCA is such a worry. I also have had like you a sore scalp but mostly on the top and back of my head. I have read GCA is more in the temples.
  • Susanne_M_UK
    Susanne_M_UK Sheilamac_Fife

    Posted

    One of my symptoms, when diagnosed with GCA two years ago, was a very tender scalp. It would reoccur when I had a flare. Yes, sore to the touch when moving your hand across your hair.

    Some people have it worse, where they find brushing their hair too painful.

  • Nefret
    Nefret Sheilamac_Fife

    Posted

    I 'm butting in on this as I have had a very tender scalp now for years.  When it is 'resting' I'm aware of  generalized head pain, but it can be dealt with (by me, at least) by using distraction/relaxation techniques.  But any touch by anything, hairbrush, comb, hands and sometimes even a hat will make me aware of the pain again. 

    At the beginning the pain was so severe that I could not put my head down on the pilow. I had very long hair at the time and my hair is thick and heavy, so I had it cut short thinking that was the cause.  It wasn't, the pain was not relieved at all.

    I was 52 at that point.

    That has now passed and the pain has subtly shifted on to the very top of my head and the front.  Pillows don't worry me now, but it is tender all the time and even now at times I find myself rubbing/massaging.  It's what I call a 'toothache' pain most of the time - I've never met anyone with toothache who can keep their tongue from poking/prodding the ailing tooth.  It makes the pain more intense so that for a fleeting moment as you take your tongue away, the pain lessens by comparison.

    I was finally diagnosed with PMR when I was 57 and GCA some years later, but not Temporal Arteritis as for some reason my temporal arteries appear to be left out of the equation.  I have never had any visual problems.

  • JanSP
    JanSP Sheilamac_Fife

    Posted

    I've had GCA for seven years but never had scalp pain. I've also had PMR with only one flare and that's either gone or was taken care of by the high doses of pred for the GCA. My GCA was confirmed by a biopsy when it first started and I was put on 60 mg pred. I had extremely painful headaches and neck pain. The headaches were on one side of my head (temporal area) but also on the top and back. The jaw pain when chewing started a couple of weeks later. I still have headaches but not as bad. I also feel like running to the doc or ER sometimes. The times I did go

    to the emergency room it was a flare (I've had 4) and my SED was way up. My ruemy sees me once a month and I have labs a few days before I see her. 

    Wishing you all a Merry Christmas, Happy Hanukkah and a Happy and Healthier New Year!  Jan

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.