skull hurts when massaging , shampooing, pressing on different areas feeling bruised, moves around, even on forehead

[arvine]

what is going on here, last few days, when touch, press on top of head, skulll, forehead,feels bruised when press on,no headache? is this connected to GCA, diagnosed with PMR, oct 2016 started on 40 mgs of pred, now,down to 4mgs, so far bloodwork shows no increase in numbers, re sed rate or esr??

[HeronNS]

I think it may be. Before I was diagnosed I changed my shampoo a couple of times because I remember exactly that painful sensation - kind of like all your hair follicles "out of joint", very tender and uncomfortable. Of course I had no idea this was a symptom related to all my other symptoms at the time. And as far as I know I never had GCA, all my symptoms vanished when I finally was given 15 mg pred! On the other hand, maybe without treatment it would have worsened. I assumed at the time that it was new shampoo which cured the scalp issue. And that is what I believed until the same thing happened again a few years later when I had a major PMR flare. I had been at a very low dose prior, for several years, and needed to go to 10 briefly, and was at around 8 or so for a while, and had a lot of trouble tapering for months. Seems okay now. Coincidence? Maybe. As I say, all I've ever been diagnosed with is PMR. I would, in your case, be tempted to go back to the dose (or a bit above) you were on before you developed this sensation, and see if that helps. And of course, the usual warning to be aware of any visual issues which should be treated as an emergency.

[arvine in reply to HeronNS]

thank you HeronNS, seems to move around in different spots , I touch, very strange, but I,ll see if I can contact my rheumy, I was getting set to taper further to 3 mgs after Christmas, so guess I will hold off a bit

[HeronNS in reply to arvine]

Yes, I think given SheffieldJane's experience, and my noting the sensation in connection with flaring PMR you would be wise to at least hold steady.

[SheffieldJane in reply to HeronNS]

when I reflect, I think Large Vessel Vasculitis may have been lurking before PMR was diagnosed . ie 7 years + ago.

[arvine in reply to HeronNS]

so HeronNS, when you increased to 10 mgs of pred, how long did you have to stay on that before symptons, scalp tenderness, disappear, and did you go right back down to lowest dose you had reached, btw, did you notice your jaws, tender as well and when I push on jaw bone, seems lumpy, like tendon swollen on both sides??

[HeronNS in reply to arvine]

There have been times when my jaw felt kind of achy, like an incipient toothache, but nothing like as painful, but I'm not aware of tenderness as such. I looked at my diary for early 2021 and it appears I was only on 10 for three days, although I lingered at 9 -7 for a couple of months. I'm afraid I cannot remember what my scalp felt like at the time but I don't think I'd have started to drop the dose if symptoms were still in evidence. I didn't drop right back because by then I had learned how high the CRP was, and treated it more like starting all over again (with a speedier drop from a smaller high). At some point during that time I switched to 2 a.m. dose (instead of with breakfast) and found that seemed to work better in that I felt better when I got up in the morning. But it still took most of the rest of the year to get reliably down to 5. Although I distinctly recall feeling that my Shingrix shot had helped me reduce the records actually tell a different story. Not sure it made much of a difference either way, although it seems the tapering, when it happened, went more smoothly and I was doing less "yo-yoing". It wasn't until after my second Shingrix vaccine in January of 2022 that I really did better, but I still had to stay at each lower dose for a really long time before repeated attempts at .5 mg tapers "took". In a way I think it was harder than my initial taper which was quite seamless until I got to a really low dose. Took me from July to September to taper from 2.5 to 2, and that's where I've been since. Have taken a couple of 1.5 doses but that didn't go well. Will try again in a few weeks.

[SheffieldJane]

My GCA emerged when I got down to 4 mgs for PMR. The tender scalp is one of the GCA symptoms. I would report this to your Rheumatologist if you have one, or get a referral to one. My GCA/LVV has not been typical and hasn’t involved my temporal arteries. It does make me feel pretty ill though. I was diagnosed by an ultrasound scan and the halo effect in the arteries showed up in my armpit. I have just had a CT scan to see if it is also in my Sinus arteries. The treatment will be a higher dose of Prednisone 30/40 mgs and tapering again and possibly Actemra to speed the tapering up.

I hope it isn’t, you feel like you’ve done your time and it’s very disappointing, until you inevitably, just get on with it. As Heron says, be acutely aware of your eyesight, double vision, blurring etc. Then your situation becomes an emergency. Good luck and let us know how you get on.

[HeronNS in reply to SheffieldJane]

Jane, it's exactly your experience which made me very reluctant to mention the scalp symptom to my current doctor. My previous one would have said "I'm not worried about that" but the present one would send me off for a battery of tests etc and then I might end up having to take more pred and . . . . I. Really. Don't. Want. To! Call me a fool. However symptom went away along with the PMR symptoms with a moderate increase.

[arvine in reply to SheffieldJane]

thank s Sheffield Jane, well I will try contact rheumy, as I just said, was hoping to continue to 3 mgs after Christmas, afterall it,s been over 6 years, and haven,t had any symptons until now that could be developing into GCA,, and if I increase on my own, back to 5 mgs, for instance, how long would that take before I would notice a difference, if in fact I did notice a idifference?

[SheffieldJane]

I really don’t know. If you mean symptoms, you might need more that 1 mg, hence the doctor.

[DorsetLady PMRGCAuk volunteer]

If may be GCA related, but even if it isn’t it does need checking -and your bloods may not be showing any increase but as we know they do have a habit of lagging behind symptoms.

Certainly no reduction until you know (and reducing just before Christmas is not a good idea ) -

and if it is GCA I doubt an increase of 1mg will be enough to show an improvement.

[HeronNS in reply to DorsetLady]

Very good points. Two years ago my CPR was higher than it had ever been (assuming the doctor was looking at the right test results as that was when somehow I got muddled with some other patient, but I did have the symptoms to go along with it). And I did need to go from about 2 or 3 up to 10 and stick for a fairly long time around 7 and 8 before I could start to go back down to where I had been. One mg more at that time certainly did nothing much.

[SnazzyD]

I agree with the others and it could well be GCA. Scalp pain was my first symptom and I didn’t really have a headache as such. Just a thought to throw in, is your hair falling out more than usual? I get quite intense roving scalp pain especially in the evenings before my hair falls out. My GCA scalp pain was static in certain places but I know we all differ in that regard. I’ve just been through an episode of that then my hair suddenly started to fall out and I’m now very thin. I think it’s a reaction to Covid in July. I also got it when my adrenal function was very low and 5 months after GCA.

[MiniSpec in reply to SnazzyD]

SnazzyD, my wife had quite extreme hair loss after having Covid last year. The hair loss didn't start till around three months after we'd both had Covid, and continued for several months. She ended up wearing a wig for a couple of months, until her hair started growing again.

She found that significantly increasing her vit D intake along with folic acid stopped the hair loss, and now she has a full head of hair once more. So don't despair, but go and talk to a wig salon in the first instance if your hair loss is becoming embarrassing. The one my wife went to told her that since the advent of Covid her business had increased manyfold. So it is a known (if not admitted officially) after effect of Covid and can be treated with the right vitamins and supplements.

[PMRpro Ambassador in reply to MiniSpec]

It is very common for your health to be reflected in your hair - not just with Covid and it typically manifests - visibly at least - a few months after the illness. A lot of people blame pred but it is just as likely to be the GCA/PMR that started about the same sort of time and was treated with the pred.

[HeronNS in reply to PMRpro]

I only noted thinning hair when I'd been on pred a few months. When I increased pred early last year noted similar effect. Definitely had PMR symptoms for a significant length of time before pred treatment. On the other hand, pred seems to have been very good for my nails! 🤷‍♀️

[SnazzyD in reply to MiniSpec]

Thank you for your kind words! I do have a wig from the first time I fell out after the GCA fired up. That happened 2 weeks before a cruise, starting in Rome when it was 38-40C!

[HeronNS in reply to SnazzyD]

Oh dear. That must have been fun --- not!

[SnazzyD in reply to HeronNS]

I decided not to wear it in Rome because I didn’t think I would ever see again the 5 million tourists crowding Rome. On the cruise ship there were so many desperate dos that my badly cut wig (too late to change it) didn’t look so bad.

[Hidden]

note my diagnosis is Stills Disease which for me manifests as rheumatoid arthritis, I’m not on pred or any biologic.

I often experience what you have described and it’s not connected to migraines which I get too. When my scalp hurts it seems to reach right to the bones of my eye sockets, jaw hinge and neck, it’s seems to comes in bouts of a few days quite randomly and I can’t isolate a cause or cycle. On occasion my ears block up at the same time and my eyes can be sore and blood shot.

I take it easy for a few days and pain relief if needed.

[arvine in reply to Hidden]

Im not with Stills Disease, is scalp tenderness, bruised feeling a sympton of that disease, what does your rheumatologist advise or what treatment is available for that condition,?

[Hidden in reply to arvine]

my bio has details but juvenile RA, rare AI Disease. I’m 60 now, diagnosed 17 and drug free since mid 20s but multi joint pain. I don’t speak to my GP about my condition as he’s clueless!

[Ansteynomad]

I have now had a tender scalp for over three years and an intermittently painful jaw for at least two. The scalp issue was a factor in my being diagnosed with GCA in December 2019, but, as my inflammatory markers were never raised, that diagnosis was rescinded three months later and eventually replaced with one of "trigeminal territory symptoms". Steroids never made a jot of difference and I declined the antidepressants offered for the diagnosis I have now.

[arvine in reply to Ansteynomad]

well so happens, Ive had those symptons last few days, rheumy seeing me on thursday, but got call back saying wanted bloodwork before I come in, they are faxing to my blood lab, so Im already thinking as has been the case for so long, blood results hav e never been raised to show inflammation, so maybe being negative, but wondering what his thoughts will be regarding my symptons, if not shown up in bloodwork