Scalp nerve pain

[Red-head44]

I have GPA and recently noticed that one half of my scalp is sore to the touch but the other side isn't. I am in remission and not on any meds for my GPA at the moment but am on clopidogril and Atorvastatin for a stroke three years ago, Can anyone shed any light?

[Investigator1]

Hi Red-head44. It’s Nick here. Yes I understand you, I too have GPA (it’s now controlled) but leading up to my diagnosis in December 2019 I had been having this sensation for a few months. Obviously didn’t have a clue what it was, in fact I was diagnosed by a Doctor touching my scalp and asking whether it was tender. I was in remission by the March but still had a lesser issue but it was still there. As my ANCA marker dropped further it went and hasn’t returned. We are all different, the presence of the scalp issue suggests that ANCA is still there and that is possible, remission for me was when it wasn’t doing me any harm any more and my marker was 93, (it was 177+ at diagnosis) and I still had a scalp issue though slight. My advice would be to have a blood test to see what the levels are like if nothing else to give you price of mind. Nick.

[Grizzly-bear]

I get this intermittently and have for years before my diagnosis. Even now when in remission I sometimes get it, for me it’s usually a sign that my immune system has gone a bit wonky again but it doesn’t last. Mine isn’t just my scalp but will also be my face and arms and sometimes legs and body on my left side, sometimes my right. It usually passes after a week for me.

[Electra1]

Hello Red Head, I have meningeal GPA and had scalp pain when the disease was at its worst...but just occasionally get it now. It can be really painful. I tend to look at it from a set of different symptoms. If you have trouble with other symptoms alongside scalp tenderness, then you need to contact your consultants/ new bloodwork. I've found the problem with GPA is that it can throw up weird symptoms: I've had facial palsy, tracheal stenosis etc.....so if your disease is active, then obviously being pro active is wiser than just doing nothing. My GPA is currently in remission, thanks to Rituximab, but I still get times when scalp tenderness is a problem. Hope this helps.......I'm going to admit, although I've met quite a few people with GPA at appointments, I've never heard anyone talk about Scalp pain before. It's interesting on GPA presents so differently. Good luck with everything....stay well.

[Red-head44]

thank you. Sounds about right for GPA. I’m reassured by your answer. I’ve been into clinics recently and they say there’s no disease at moment so fingers crossed. X

[Suzi70 Administrator Vasculitis UK in reply to Red-head44]

have you had kidney function blood tests recently, I only ask, as a tender scalp can also mean there could be a possible problem with the kidneys.

Better to be safe and check.

[Red-head44 in reply to Suzi70]

Yep. Everything supposed to be grand. Thanks

[Budapest]

Hi Red-Head44,

For the last 9 years I have been under Neurology for head pain. Initially I had a brain scan &, thankfully, the pain wasn't caused by my GPA Vasculitis. Currently, I am remission from the GPA.

I remember having head pain in childhood. It is genetic for me as my father also suffered from head pain. The pain seems to move around my head!

I do neck exercises which were given to me by my private Physio. I saw him because I was having head and neck pain.

I am still trying to find a magic pill to help me! I have had some success with Amitriptyline but the side effects are troublesome. I will soon try Pregabalin, as suggested by my Vasculitis Consultant.

I get great relief from using an 'Icekap', bought online. I use it as soon as I feel the pain coming.

I also find listening to the podcasts by the National Migraine Centre very helpful.

I hope that there is something here to help you.

Best Wishes

Budapest