GCA scalp sensitivity

[Rickgrey]

If prednisone is not helping with scalp sensitivity does that mean the sensitivity is not caused by CGA?

[DorsetLady PMRGCAuk volunteer]

Could be -but could also be not enough Pred.

Bit difficult to give proper answer as nothing on your profile to indicate what doses you are on - and it just says PMR.

PMR doses aren’t enough for GCA -so more info required please .

How long diagnosed, what diagnosed, any other symptoms, current dose?

[Rickgrey in reply to DorsetLady]

Diagnosed with pmr 4 months ago and started a prednisone taper beginning at 40 mg at 20 mg symptoms returned and started over at 40 mg. Suspected GCA based on temporal ache, some vision blurriness and scalp sensitivity so prednisone was raised to 60 mg two months ago tapering down 5 mg every two weeks currently at 40 mg. Had temporal biopsy done while at the 60 mg dose it came back negative.

[PMRpro Ambassador]

What dose are you talking about? Has to be enough to manage the inflammation. It's like a fire - a thimble-full won't douse a fire that needs a bucket-full!!

[Rickgrey in reply to PMRpro]

Started at 60 mg two months ago tapering down 5 mg every two weeks currently at 40 mg

[PMRpro Ambassador in reply to Rickgrey]

So you have a diagnosis of GCA? Did you have scalp pain before the 60mg? DId it go with 60mg? What other symptoms did you have?

[Rickgrey in reply to PMRpro]

Diagnosed with pmr 4 months ago and started a prednisone taper beginning at 40 mg at 20 mg symptoms returned and started over at 40 mg. Suspected GCA based on temporal ache, some vision blurriness and scalp sensitivity so prednisone was raised to 60 mg two months ago tapering down 5 mg every two weeks currently at 40 mg. Had temporal biopsy done while at the 60 mg dose it came back negative.May have had some scalp sensitivity off and on prior to pmr. Currently the sensitivity is constant, it doesn't get better or worse and is not severe.

[Viveka in reply to Rickgrey]

The sort of thing where you're reluctant to comb your hair but it's ok once you get going? A prickly sensation in the background unless you're thinking about it? Or stronger?

Have a word through your rheumy helpline or through a secretary and ask for their thoughts on this in relation to your taper plan.

Scalp sensitivity pops up along the GCA journey. It's a low level symptom that often disappears over time but can also be the sign that something is about to kick off. Getting worse or additional symptoms would be expected then.

Best thing is to start to keep a symptom diary so you can recognise and try to understand your patterns. Good luck.

[DorsetLady PMRGCAuk volunteer in reply to Rickgrey]

If you only started 2months ago - although in line with guidelines would say maybe not on that dose long enough.. and then guess you’ve probably got below level you need.

As I replied to someone else this morning -two weeks at any one dose isn’t always enough to know that dose is sufficient before you drop down. We think (I know from experience) 3 weeks is better. But unfortunately the guidelines and many doctors think everyone can manage on 2weeks. Some can, some cannot.

Just seen your reply as writing - just because TAB was negative it doesn’t completely rule out GCA - only means there was no trace in the sample taken. Being on 60mg perhaps ? Could be elsewhere in that artery or other arteries. Treatment needs to be based on symptoms..

Personal opinion-you need to go up to at least previous dose, maybe more and contact doctors to advise them of return of symptoms.

Early days with GCA, so flares are very likely and they need to be addressed promptly by doctors.

Please let us know what advice you get from medical team.

[SheffieldJane]

It’s possibly a bit soon for Pred to mop up all your symptoms. Tell your doctor, it is crucial to adequately treat GCA. The biopsy can only be positive if they take it from the right spot so a negative is not definitive.

[Noni71]

I have had GCA for two and a half years now and have always had scalp sensitivity. I spoke to my rheumatologist and he said it wasn’t GCA as my inflammation markers were normal and I had no other symptoms. He said it was probably something else. He didn’t elaborate and I didn’t ask him!

[Rubha in reply to Noni71]

I mentioned this on and of scalp sensations to my rheumatologist and he said as I had GCA , there may always be a slight sensitivity in the TA , possibly caused by damage pre pred. He was not overly concerned but said and increase , headache etc should be dealt with asap.

[Karenjaninaz]

You can have scalp sensitivity from psoriasis. I’ve had that and it comes and goes.