polkadotcom6 years ago

A sore, tingling scalp was one of my first symptoms to emerge and it was impossible to put my head on a pillow to sleep. I began sleeping face down flat on the bed with just a tiny pillow between my shoulder and my head - as long as I didn't move, I was ok like that and could get several hours of useful sleep. Other symptoms began emerging - a very sore and stiff lower back in the mornings - for which I blamed my daughter's spare bed

It was about 4 years following these symptoms that I was finally diagnosed with PMR and GCA followed along a few years after that. I still have the sore head, but it is liveable with and this is after 16 years of being on steroids - I had a very gradual onset with NO inflammatory markers which confused various doctors (and me). I did not and never have had had any visual problems, so it would appear that I have GCA of the medium arteries, but not Temporal Arteritis.

I discovered various things I can do which give me temporary relief - just putting my head down and brushing my hair the wrong way helps but if that is too painful just gently tugging at my hair seems to relieve the pain for a while. Also, like toothache if you do something to make the pain worse (I've yet to meet anyone with toothache who was able to stop poking at with their tongue) it feels better after - I found putting a book on my head helped and various other ploys to make my head feel better. A bath was bliss - I could dunk my head in the warm water which was like magic for taking the pain away. My husband was permanently trying to stifle his laughter for several years, but hey, it's my head and I like it!

One thing I would suggest is that you try to get an appointment with ENT unit at your local hospital just to rule out any sinus problems. And also of course, tension in that area will make everything feel more painful, so stressing about anything is out!

Cobnut in reply to polkadotcom6 years ago

Hello Polkadotcom

Thanks for reply. I don't think my scalp problems are anything as bad as yours and I'm living with them quite happily and I'm aware that I might have to up the pred at any time now I'm down to 26mg. Its interesting that you say that stress etc makes the pains worse as I have had the dreaded three week cold whilst visiting friends and relatives and I'm sure this has happened. I'm now trying to sit quietly at home for a week before Christmas takes over again. No matter how old we are we always seem to have demands on our time and as my GP said we don't rest enough. So perhaps we should enjoy our Christmas and let the young ones do it all!!

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PMRproAmbassador in reply to Cobnut6 years ago

We have a wonderfully peaceful Christmas, all 2 of us: steak or raclette at home on Christmas Eve (everything in our village is closed as they celebrate), out for pizza on the 25th and ersatz xmas dinner on the 26th at the hotel in the village when they reopen for the ski season after their own celebrations. No stress, no hard work, no disagreements...

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polkadotcom in reply to PMRpro6 years ago

Ours is similar - there will be 4 of us this year, our daughter and my brother make up the 4. Christmas dinner at the local carvery (they do it well) and Boxing Day at our local. Few small prezzies for the grandchildren in NZ all done and dusted.

I'm always glad to get back to 'normal' though.

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DorsetLadyPMRGCAuk volunteer6 years ago

Hi Cobnut,

Sorry to hear about your re-occuring scalp pains. And I can fully understand why your GP raised your Pred. Although you say your ESR was only 8 - it should be low when you're on Pred (although mine never was except for early days) - and very often lags behind any symptoms anyway.

Prior to diagnosis, I had the typical tingling scalp, but no particular headache nor enlarged temporal artery - so don't assume you must have a headache - although many do. Unfortunately, we are all slightly different in our symptoms.

I can't explain the tingling scalp on its own, but I do urge you to be cautious, and the fact that you've had two flares indicates to me that the inflammation is not fully controlled.

I know we are all different, but I started at 80mg (after losing sight in one eye - due to very late diagnosis) and it took me 4years 5months to get to zero. I did have to raise my Pred twice to 25mg, but that was due to stress increasing the inflammation not a return of symptoms.

Personally I feel it takes a couple of years in the case of GCA for the Pred to get the inflammation really under control, or maybe that was just me because it had a firm hold before being treated.

Do hope you get it resolved quickly.

raymck6 years ago

Hi cobnut, I note another reply from a GCA sufferer like me who lost one eye vision and took longer than my 2 years to reach Club Zero. So I'll add my bit about the scalp. In my case my GP calls it Fungal Infection as it's not only tender/itchy/sore but has skin lesions or bumps which do not really respond to treatment. I'm on corti-creme which helps to make it bearable, but isn't a cure at all. Doubt there is anything that will, so just grin and bear it, as most Club Zero folk seem to be good at? We are all different post-steroid it seems, including the aches/pains in joints/shoulders (sound familiar?). Good luck with yours and let us know if you come across the magic potion. Regards. Raymck

Ida-June1286 years ago

I have PMR but as far as I know not GCA. I have had tingling in my scalp for several months, just down one side which has lately spread to the side of my face and down my neck. Not constant though perhaps 2 or 3 times a day and no soreness or headaches. I find if I take some deep breaths and then release them it seems to send the tingling away and I was told it might be a possible sign of tension and lack of blood flow to the scalp. Or should I worry?