Tenderness over parts of scalp and over the temple but no headaches is this normal with PR?

[Birdboxinthegarden]

Initially Consultant was of the opinion that he sees no benefits in a cell biopsy but was started on 40 mags of prednisolone my blood test showed an ESR elevation of 127. It dropped dramatically after that. Having days with soreness in parts of my scalp and mild headaches just hoping it’s not GCA?

[DorsetLady PMRGCAuk volunteer]

HI,

see from your last post you are on 12.5mg. Is that right? Is that because Consultant has decided you don't have GCA?

Others with PMR have said they do get headaches - I only had GCA so can't comment personally, but I found (pre diagnosis, pre medication) my scalp tenderness was there all the time, as were the headaches.

I think you need to speak to Consultant and explain symptoms - which should always be the key. In the meantime if you are only on 12.5mg you could increase your meds for a few days until you can see him/speak to him and see if that helps.

Please keep us informed.

[Nuff1 in reply to DorsetLady]

Conversely, OH pre diagnosis of PMR/GCA had the tenderness of scalp but no headaches.

[mad-country-lover in reply to DorsetLady]

I have had shooting pains in my head on and off since January, my Rheumatologist spent ages pressing my head around, but as I did not have persistent pain and it comes and goes she said it was ok.

two weeks ago as we drove into the low sun, it created a sharp pain in my left eye. next day my vision went a bit cloudy ,but that also comes and goes,,, GP was on holiday so have been using infection drops and wash it out several times per day.

I have had pressure pain in that eye and the odd stabbing pain at the back.

it feels like it is just not focusing properly

last week I developed a runny nose the same side ,, not much and not a cold.

I feel ok now but did have several unwell feeling days

Pleased Im seeing her again on Tuesday

[Birdboxinthegarden in reply to DorsetLady]

Hi, thank you for your reply, much appreciated, will speak to the Consultant. Started on 40 mg of prednisolone in December, now gradually tapering, and taking 12.5 and will taper to 10 in a couple of days. Still have scalp soreness though.

[DorsetLady PMRGCAuk volunteer in reply to Birdboxinthegarden]

You’ve done a quick taper, so just steady up a bit.

Please discuss scalp with Consultant though.

[PMRpro Ambassador]

I would report that to your doctor - especially if it gets worse since you are on quite alow dose now.

I have only ever been given a diagnosis of PMR, my markers were in normal range (though possibly raised for me) and 15mg pred achieved a miracle response. At some point of the 5 years I had PMR symptoms without treatment I had a period with a sore scalp, hurt to brush my hair and lie on a pillow, and some other mild GCA-related symptoms of jaw claudication, a sore throat and cough and thigh claudication. The sore scalp went away on its own after a month or two as did the jaw claudication and has never returned. I never had a headache. It was felt to be unusual - but I have read in the medical literature that it is thought that the process that causes GCA can start but then abort soon after.

So you can have scalp pain without it progressing - but safety first!

[SheffieldJane in reply to PMRpro]

Gosh me too! In the years preceding my PMR diagnosis. A horribly irritating cough, a feeling like I couldn’t be bothered to chew, severe pain as if I had been hit on the back of my head with a cricket bat. Intermittent waves of pain in my jaw and teeth. Photosensitivity!

I hadn’t heard of GCA or PMR. I made lifestyle changes, some stressors lifted. It went, to be buried in a box labelled “ I don’t know”. All of the tests I had were heart related. So possibly it was the beginnings of GCA that aborted and eventually presented as PMR. Crumbs!

[PMRpro Ambassador in reply to SheffieldJane]

Yup! And when I did see a rheumy no-one asked about any of that. Just headaches - god they went on about headaches. Despite the fact that fewer than 40% of GCA patients present with headache. It wasn't until a year or so into this lark that I went to the launch of the NE charity DVD - and learned more to the stuff I'd already found on the internet.

[SheffieldJane in reply to PMRpro]

I am gob smacked! OH has gone back to the Sunday papers however. I hope it doesn’t make it more likely that the PMR I have now morphs into GCA! Nobody asked me the right questions either.

[PMRpro Ambassador in reply to SheffieldJane]

Don't think so - although the general consensus for me is that I probably have had large vessel vasculitis and that's why it is hanging around. Don't know if that means it might make sense to try other "stuff"

[SheffieldJane in reply to PMRpro]

Like Methotrexate you mean?

[PMRpro Ambassador in reply to SheffieldJane]

Tried that last summer - made me feel so awful I couldn't have held out to see if it helped!! No, something more vasculitis-related. Not keen mind you!

[SheffieldJane in reply to PMRpro]

I’d want a definitive diagnosis first. My Aortic valve was ok. When scanned.

[PMRpro Ambassador in reply to SheffieldJane]

Exactly. I would love a multi-disciplinary discussion with rheumy and cardiologist. Don't somehow think it is worth holding my breath!

[SheffieldJane in reply to PMRpro]

I do seem to have the symptoms of Granualtosis with Polyangitis. Stuffy nose, sinus problems some changes in the bridge of my nose. Wheezing, breathlessness. The above is not spelled right but you’ll know which type of Vasculitis I mean. No wonder the doctors cringe when I ( rarely) appear. I thought it was allergies which it might be. Anyway food for thought, I’ll save it for 2 am, with the rest. Sorry your OH is not feeling too clever today, please pass on my good wishes!

[PMRpro Ambassador in reply to SheffieldJane]

GPA, used to be Wegeners. Oh I do hope not. Does Sarah know your have nose changes?

[Ronswife in reply to PMRpro]

I am almost 3 years now and at 7.5 mg of prednisone. At times my head feels like lead and my scalp hurts by what a doctor said was migraine caused by muscle tension. I've had horrible TMJ with crunching g so I feel it is related and not GCA but I always am concerned. I'm feeling well accept for waking up the adrenal glands. I am reducing so slowly 1/4 mg at a time now. I hate how clumsy and hard to think I feel.

[SheffieldJane in reply to PMRpro]

No she doesn’t because of my assumption that it was allergies due to a compromised immune system. The GP has prescribed nose drops for the blocked nose that help a bit. It is the peculiar symptom of the bridge of my nose changing, flattening widening a bit. I put that down to another age indignity. I just get bored hearing myself and then miss out something key. My OH has gone all harrumph, because I get in a tis and he thinks I’m getting better.

[PMRpro Ambassador in reply to SheffieldJane]

You really do need to tell her about the change in shape of your nose - it probably isn't anything nasty but that does need ruling out.

[SheffieldJane in reply to PMRpro]

Thanks again. If I really look, it does seem to be encroaching on the tear duct area. I have never even mentioned the possibility of sinusitis which can cause this too. It’s a new day! Up and ready for battle again!

[Marijo1951 in reply to PMRpro]

I'm interested that you say fewer than 40% of GCA patients present with headaches. I did have a headache, but it wasn't as terrible as the rheumies seem to believe it should have been, though it tended to be worse when I went to bed and tried to lie on the area. As I had PMR at the same time, the crippling pain and stiffness seemed by far the worst symptom compared with the headache. Of course, when I later found out that GCA can result in loss of sight, I realised which of the two was probably the more serious.

The headache was persistent and 'weird', not like any other headache I've experienced as it was kind of superficial - outside the skull rather than deep inside. When I found out that it was a form of vasculitis and they took the biopsy from just under the skin, it all made sense.

[PMRpro Ambassador in reply to Marijo1951]

The headache they are thinking of is due to vasculitis affecting the blood supply in the brain - but that isn't the only place affected. Scalp pain is involvement of superficial arteries - the brain isn't.

[Birdboxinthegarden in reply to PMRpro]

Thank you for your reply. I did actually tell my consultant that occasionally I get a sharp and short throbbing in my eye and my temples are tender. He said it’s all connected to PMR and fibromyalgia. So with the PMR is it connected to Vasculitis?

[PMRpro Ambassador in reply to Birdboxinthegarden]

PMR and GCA are in many ways the same disorder - just different blood vessels are affected.

[Mstiles in reply to PMRpro]

Wow I’ve never heard that statistic before, (fewer than 40% present with headaches!). Could be very dangerous if the diagnosis is missed.

[PMRpro Ambassador in reply to Mstiles]

It has to be part of the reason the diagnosis seems to pose so many problems - when the patient doesn't have a headache many doctors don't look further. Although a lower number present for the first time because of headache, eventually more like 70% mention headache. Some have headache at the back of their head - GCA typically likes to attack the occipital region of the brain - but I have heard of doctors who say the headache is "in the wrong place for GCA"! It's the same with the biopsy - it is only positive in about half of patients or fewer but that doesn't mean half of patients with symptoms don't have GCA.

[Mstiles in reply to PMRpro]

Yes that’s where I had this “weird” headache, the occipital region. Didn’t respond to aspirin or Tylenol, worse at night. My sister is an occupational therapist who does home visits even questioned the GCA diagnosis because the headache wasn’t “excruciating” like a patient she had with GCA.

[PMRpro Ambassador in reply to Mstiles]

And??? depends how severe it has become - leave it long enough and it would probably become excruciating!!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Surely does!

[Hindags]

When I was first diagnosed, I had lots of different head pains and sensations. I also had a high ESR that responded quite quickly to Pred.. Over a few months, maybe 4-6, the head sensations went away, and thankfully, they stayed away.

I never had a TA biopsy but still, after 26 months, and currently at 2mgs, I always carry 80 mgs and 2 baby aspirin to take in an emergency should weird visual symptons or typical GCA jaw and head pains develop. I can always call emergency, but want to be prepared no matter where I happen to be.

[Dream21]

I started with PMR and then GCA. I would have your doctor check you. I had been on Prednisone for 3 months; biopsy was negative. Still doctor diagnosed GCA due to symptoms. Some studies say a biopsy is not accurate after someone has been on steroids for a long period of time.

[Cally55]

I have been told that I have the wrong sort of headache numerous times! After 3 years I have had a definitive diagnosis of GCA by a national expert. I have sensitivity on the apex, that was the symptom I first went to GP with. I also had weight loss and transient loss of vision raised markers and fatigue. I have never been above 40 mg of pred as I start to see things at higher doses! I weigh 67kg now. I also get tongue and jaw pain. The stiffness of PMR came later.

This disease presents in many ways, but as I understand it once you're on prednisolone the nastier effects of GCA become less likely. If you can try to see a consultant who specializes in GCA .