Quick question for those who have/had GCA. If you had scalp tenderness beforehand, what was it like? Where did you have it and how big an area?
I daresay that this will make old posts pop up, so might get my answer there.
I'm a bit of a worrier, even without the pred and that makes it worse.
Hi Gimme. Patches of scalp would feel bruised and tender, like tugging too hard on a tangle, and I'd avoid brushing those areas. Random areas - sometimes near the crown, at others nearer the base of skull. Either side. Situation much improved since on pred.
Virtually all over scalp -felt like neuralgia pain -painful to comb/brush hair
Thank you DL. Nothing as extensive as that, but combing my hair is when I noticed.
Well just monitor it… and mine was a long way into symptoms with no Pred… so on the extreme end… but you did ask😊
It's all good, helps to build a picture. I've got some info from Snazzy to read, so even if I don't act today, I will monitor it and not ignore it.
Yes I’ve seen SnazzyD reply…
It felt like a stingy burn on the skin. It was mainly on the one side but ended up over my whole head. Cold wind on my face, wearing glasses or a hat irritated me and my pillow felt like a rock. I had an ache like a tight muscle at the base of my skull and a niggly muscle in my neck that massage did nothing for. Initially it was worst at night and first thing in the morning.
I got it again on my crown just before my hair fell out and also with a tight sternokleidomastoid muscle which is worth looking up as that can mimic GCA in some ways.
What is your problem?
Hi Snazzy, thank you for that. Poor you, that sounds horrible. I'm not nearly as bad as that, and I hope that I am worrying about nothing, but you know how it is. I have PMR and it makes you alert to any of the signs of the possible onset of GCA. I sincerely hope not, apart from all that that means, I would need a padded cell on 60 mg pred. 15mg made me suicidal.
Just for some context, rheumatologist told me to come off pre last August, he doesn't believe I have PMR. A month ago I had got from 5 mg, finally down to 2 mg. Surprise, PMR symptoms came back and deathly fatigue, and I had become so weak that I was constantly falling over, due to losing my balance and not being able to steady myself as my legs and hips hurt so much. So I went to see doc and I am now back on 6 mg.
Previously, I was symptom free on 6 mg. However, now at that dose, I still feel really unwell at times, fatigue and just that feeling of general malaise. Most of the pain has gone and my legs are gradually improving. I've had that problem with the back of my neck, like you say, since last January, it disappeared when I went on 15 mg pred and came back around August 23, along with the tightness in the sternokleinomastoid. The tightness on the back of my head felt like my scalp was being pulled off the back of my head at times.
I don't have a severe headache, although my head has felt like it is stuffed full of cottonwool for the last few weeks, I get my words muddled up and I keep forgetting what I am saying midsentence, like my brain stopped working for a second. Though the pred does that to me and I have raised the dose again.
I have had tinnitus for the last 4 or 5 years that I put down to hearing loss.
My jaw is stiff and it is like my face some times goes into spasm. It has been like that since I went on pred. I don't have jaw pain, it is more stiffness when I open my mouth wide. I am mid dental treatment and only teeth that hurt are the ones that the dentist has been prodding.
I don't have any blurring of vision and I can still see reds clearly, something that the ophthalmologist told me to look out for last May.
Last time inflammatory markers were tested were early Sept 23. ERS and CRP have never been raised.
Now this thing with the scalp has happened two or three times in the last month or so. Different area each time, but about 2 inches across and like you say, I notice it when combing or washing my hair. It feels like a bruise, but I don't remember banging my head.
I'm thinking of driving down to the doctor's surgery and explaining to the receptionist and asking her to ask the GP to call me. I saw him a month ago and I trust him, all the other people tell me something different. When I saw him last, he did tell me to let him know if I had any other questions. Other than that, I could call 111, but I'm not sure if I am over reacting to the scalp thing. So the reason for asking the question was to see if it is typical for GCA. Ideally, I think I would like my inflammatory markers to be checked.
Well for one, coming off Pred at that speed in the end could well have left you with adrenal glands that aren’t able to come back on line to replace the loss of Pred with their own cortisol. This could account for your deathly fatigue and brain fog. You might still feel it even on 6mg.
However, the whole picture sounds like GCA isn’t an unreasonable diagnosis to revisit. Your dentist should also check your temporomandibular joint. I had head problems years ago after dental treatment which needed me to hold my mouth open very wide repeatedly, which messed up my tmj and neck muscles. An osteopath sorted it out for me.
Have a read of this about the sternokleidomastoid muscle and also the video is useful to know what’s going on underneath. It is really useful to keep on top of looking after this muscle because it saves false alarms.
healthline.com/health/stern...
youtu.be/DCOuG3bs2f0?featur...
G CA eye issues don’t always come as blurred vision. I had black spots when exercising, sparks of light in the dark at night, occasionally seeing grey in my right eye when going to the loo in the middle of the night. I also had brain fog and losing my thread in conversations when before I never did.
It is a complicated picture and you may end up having to eliminate things yourself.
Many thanks, Snazzy. My doc is on annual leave, I found out. I'll have a read and call 111, if I am still worried.
P.S. I dropped from 5mg to 2 mg between August and February in 0.5 mg drops. Do you still think that is too fast? I know the initial drop from 15 mg to 7.5 mg was fast, but I was at risk of having a full psychotic episode and needed to drop quickly. I then stayed on 5 mg for several months with no issues.
I dropped from 5mg to 2 mg between August and February in 0.5 mg drops.
Took me similar time to drop from 6mg to 3mg when my adrenals were faffing about... but [sorry to be boring] we are all different. Plus I came from a much higher dose with no flares -so again a different scenario.
No perfect answer😞
It’s only too fast if it isn’t enough for you. Sometimes if it is too fast, it doesn’t show for a while. Time will tell, but be wary of finding a possible alternative to grasp on to in order to make the GCA worry go away. These ideas need to be explored in parallel I think.
Did you have any medical help with the psychosis or is it documented? If you do develop GCA perhaps you could be a good case for using Actemra but that would be a specialist decision. Do you really need your usual doctor to come back from holiday?
The psych reaction was all documented. It is on my notes as I looked at my records online recently. It just happens that the day it happened, I had an appointment with the doc next day for another reason, so I delayed that day's dose until I had seen him. I was in a bad way when it happened, but I am self aware enough to know that it was not me and that it was the meds, so I was with my friend until the next morning. I wasn't hospitalised but the surgery kept a pretty close eye on me for a few weeks until they were sure that I was OK. I seem to be pretty well OK, below 7.5 mg, but above that my anxiety levels start to become unmanageable.
No, I don't have to wait until GP comes back. I'm monitoring it atm, and will call 111 if I need to. It's helpful to read the comments here. If it is GCA, it seems that everyone experiences something quite different. What strange illnesses these autoimmune conditions are. It's a good reminder about not leaping onto another solution, and I am very mindful of the need to not ignore the possibility of GCA.
I think the main issue with the dose reduction was that the grumpy rheumatologist wanted me off pred completely by Christmas. He was advocating 1mg every 3 weeks. As you can see, I ignored that. Problem with not waiting for GP to come back is that I am likely to be seen by the grumpy rheumatologist again as he is attached to the surgery and he will most likely contradict what my GP has told me. He told me to come off pred and the GP put me straight back on it again. I got such a roasting the last time and I'm not going to put up with that treatment again.
I've just got home as I had a different appointment this afternoon, so I'm going to read what you linked above now.
It is so hard. You as the patient should not be in the middle of two disagreeing doctors getting a telling off. It’s a shame they don’t seem to pick up the phone these days and pick each other’s brains like they used to. Egos were the same but this idea of budgets and procurement pathways wasn’t.
Snazzy, can you describe what you mean by your hair falling out? I have PMR and have not been diagnosed with GCA but have had a few bouts of scalp tenderness. It has led to alopecia on 2 occasions, but the hair came back. Did you experience alopecia with the tenderness or overall thinning - and did the hair come back on a higher dose of prednisone?
Since PMR/GCA is an inflammatory response, I imagine the prednisone would bring down the scalp inflammation as well. Would be helpful to know what your experience was? My scalp has just started to become tender again this past week 
I am tapering from 4.5 to 4.0 and wondering if I should put the taper on hold - which I hate to do since I had gotten down to 3.5. But don't want to lose hair again either!
Hair can fall out as a response to a systemic illness of any kind and it can be delayed. PMR/GCA is no different. I lost nearly all of my hair 5 months after my GCA flared up. It grew back but as I had various bumps along the way such as adrenal insufficiency or Covid , it had a bit of a go. Before each episode I get patchy scalp tenderness, particularly the crown. I had it before it fell out with chemo and with minor seasonal shedding since zero Pred. It also happens with tense neck muscles.
I’m not sure whether the Pred is making any difference either way but I would say it makes the journey a lot easier if one doesn’t get too fixated on numbers. Zero seems so close at this level but actually it can be a long way off in reality and it’s not worth the stress. 0.5mg drops are a bigger and bigger percentage of your dose gone every time.
I had patches of tenderness round the back of my head that lasted for about a week. But it came and went about 2 months before GCA manifested itself.
Hi Gimme, mine was a constant and painful headache. It hurt to put my glasses on and wash my hair - like a bruise. Feels like a constant ‘poking’ at temples too. My tinnitus got much worse (although it does with stress) and I lost a lot of weight prior to diagnosis without trying. ESR and CRP constantly low and ‘normal’. No PMR prior to GCA.
2 years on, on 7.5 mg pred and getting headaches but they are treating this as ‘something else’ an evolved migraine and I do get pain at base of skull. No bad headaches since latest meds. 🤞🏼 Hope this helps.
I'd already had tingling , heat and tenderness from Trigeminal Neuralgia and Migraines, but when GCA began the Migraines became constant, it was particularly bad in my right temple, my jaw pain got worse, I had ear ache and tinnitus, swallowing was more difficult , I felt like I had been punched in the eyes and my whole scalp felt prickly and raw, it was horrible to touch , let alone try and brush my hair.If I try and describe it I'd say the scalp felt similar in pain and sensation to having very bad sun burn, or a scale from hot water, every hair follicle seemed to feel sore.
I have tenderness all over my scalp, it’s a kind of weird feeling, almost like it’s not your own head. It is even more tender closer to my temple. I have also lost a lot of hair over this area and where I get a lot of temple and head pain. GCA has also left me partially blind in o e eye. I get a lot of jaw and neck pain on the same side, which also results in tender head and scalp.
I believe this is all part of GCA.
Are you saying you are still getting all these symptoms despite being diagnosed a couple of years ago and still on TCZ and Pred? If so, then why isn’t your doctor addressing the issue?
I am having both Toc and am now down to 3.5mg of Prednisone. I have gone upto 60mg several times due to temple pain.
I went into remission, but unfortunately it all raised its ugly head again Nov/Dec and my pet scan confirmed everything.
So are you saying with these head pains in Dec and a PET and presumably an increase in Pred at that time, you are now down to 3.5mg , and still having pains or not?
I had the tenderness all over my head, brushing hair was painful as well.
mine was all over the top of my scalp, even a slight breeze moving my hair hurt.
I was convinced it was a bruise on my head … although I was slightly confused as I didn’t remember hitting my head in that place! When it’s returned a couple of times when I’ve reduced too fast, I’ve probably noticed it earlier: on my forehead when cleaning my face when the extra pressure’s made me go “ooh!”, or when brushing my hair and it’s beyond the usual “yowch!” for a tangle, or has persisted afterwards.
Yes I remember scalp tenderness, and didn't like brushing my hair. It went away with pred and didn't come back.
Small sore spots on a square formation around the crown from the temple angles, along the hairline, and across the parietal ; or around ears and on back of ears. Feel more sore as I touch them but sometimes with massage they disappear. Sometimes they last a few hours or a day; sometimes longer. Usually in similar locations but come and go. Scalp tingly, prickly, overly sensitive.
In a flare they are persistent and constant. If one or two come and go and don't get worse I treat them as 'escape' GCA. I also believe GCA makes the scalp more sensitive, so headaches can kick these sensations off.
For me the advent of GCA was marked by a headache on the top of my head, on the left hand side. I found the skin very tender to touch, and the headache didn't respond to any painkillers. After a couple of weeks of this, with the headache becoming more persistant, I went to see my GP and he immediately put me on 60mgs of Pred.
Bearing in mind I'd been on Pred for around a year at that time due to PMR, and had reduced from 15mgs per day to 10mgs per day, so I was somewhat worried at this new development. Anyway, at 60mgs the headache went away within a day or so. After that I quickly reduced down to 20mgs over the next two months and then slowed the reduction till I reached 15mgs again. From there I very slowly reduced down to 10mgs once more, but this time it was the reduction from 10mgs to 9mgs that triggered it.
The headache returned exactly as it had been the last time, so after a day or so of this I went straight to the surgery once more. This time I saw a different GP, but he agreed that the GCA had returned, and put me on 50mgs per day. Once more the headache dissipated almost immediately, and this time I took my time reducing.
When I reached 10mgs I was very reluctant to attempt reducing again in case it set off the GCA, but I was very careful to use a DSNS type reduction, and this time the headache didn't return.
That was around 10 years ago, and it's not come back since, although I'm still on 3mgs of Pred, and my Tinnitus is still roaring away in both ears, just as loudly as it did the day after I started on Pred back in 2010.
Anyway, don't ignore the headache, but try painkillers to see if they mitigate it at all. If they do then it's probably not GCA, but if they don't touch it then it definitely is GCA, based on my own experience.
Keep us informed as to what happens, as it's always good to get more information about how this awful disease works, best of luck!
Rookie error by that doc - the GCA hadn't come back, it had never gone away, you had just got to too low a dose to manage the inflammation that was being created each day. You'd probably have been fine with 20mg and saved yourself a lot of pred but at least he raised it.
Hi Gimme, I can certainly understand your worries. My pain in very dull in the right side of my head. Sometimes behind my ear or temple. At first I did not think it was GCA but it always goes away with prednisone. I have had blurred vision but the eye doctor thinks it’s because of my dry eyes. Drops and plugs are helping. I reduce 1/2 mg if Prednisone every month. I am currently at 6. 1/2 as well as Actemera infusions once a month. My Sed rate and CRP is below what it should be.. I hope things work out for you.
Try not to worry too much, I found it only makes things worst. 🍀
"My Sed rate and CRP is below what it should be."
There isn't a low limit for either - the lower the better!! And the lowest level you get to with pred is the level you should always be aiming for - each of us has a personal normal, mine is low single figures for sed rate. The range is for a large group of nominally healthy subjects, usually about 10,000 or so ...
scalp sore all over and got so painful that I couldn't rest my head on a cushion
or back of chair. I had to sit without resting my head at all, thus putting quite a strain in my neck. I had this for 4 weeks and then it went away and the pain moved to other parts of the body.
Scalp tenderness was the first symptom that prompted me to go to my primary doctor. I'm down to 10 mg of Pred from 50 mg 6 months ago. I still have occasional tenderness but not so bad. I also have very tender spots on my arms and legs but I've had those for years. Doctors don't seem concerned, but, that's nothing new. Sending you a hug
Hi, I had tenderness kind of like a bruised feeling on the top of my head before GCA. I still get it from time to time but not bad. It’s been 14 months now since diagnosed.
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