advice as to what to do now

[jac-s]

i have had pmr for a year now, i was down to 8mg prednislone in jan when i got a cold, which i think caused a flare, as i had a moment of double vision in the morning, got tender scalp and aching pain behind my ears. i upped my dose to 10 and i went to the doctor, i had bloods done my crp was 13 so slightly raised, but still considered normal and i went to the opticians for check up. all seemed ok so after a couple of weeks i started to reduce to 9mg, but after 2 weeks got sore scalp on the very top of my head, so upped to 10mg again and phoned doctor. he said top of the head is not the usual area for gca to cause tenderness usually its above the temples, he said to stay at 10mg. i would have liked to have bloods tested again but was not offered that. four days later i still have a tender scalp although not as sore, i can feel the tenderness more if i pat the top of my head, infact it doesn't hurt if i press it. i still feel quite anxious that i have a sore scalp and am doing nothing about it, should i phone the doctor again? i have also been getting really tired especially on the drive home from work, could this be sugar levels because of lack of food, does prednisolone cause this or is it the pmr? Thanks for any advice

[DorsetLady PMRGCAuk volunteer]

Hi jac-s,

Sorry to hear you're having problems. As you rightly say your flare could have been caused by the cold, which also may have accounted for the headaches etc.

Don't think your doctor is correct in saying top of head tenderness is not GCA - it's amongst one of the symptoms - I certainly had neuralgic type tenderness over the whole top of my head pre diagnosis - uncomfortable to comb, wash hair etc. Fatigue us also a symptom of PMR, and unfortunately a side effect of Pred.

Yes lack of food is likely to make you light-headed if your blood sugars have dropped below normal - why lack of food? A snack of some sort would be advisable before you drive home.

Do you have any other symptoms that make you think it could be GCA? If you don't, they maybe just monitor for a few days. Worrying about it is likely to make it worse.

[jac-s in reply to DorsetLady]

atm just the sore scalp, previously I have had hearing problems with increased tinnitus in both ears and I think my hearing is worse than this time a year ago, I also think my eye sight has changed but I have recently had then checked. So I think i will wait a few more days and see if the soreness goes. Does PMR cause scalp soreness or is it just GCA?

[DorsetLady PMRGCAuk volunteer in reply to jac-s]

PMR shouldn't affect your head - it's primarily your main muscle groups - shoulders, hips, pelvis, knees.

[jac-s in reply to DorsetLady]

thanks, yes thats all areas i was affected by before going on steroids. the head and ear problems have only happened since, they are not extreme in pain like some people have experienced maybe thats because i am already on prednisolone. i will speak to the doctor again but i feel like i will be saying the same as before and will get same response. thanks again for your help

[PMRpro Ambassador]

Oh dear - there is a difference between a sore scalp (very typical of GCA) and tenderness over the temporal arteries (also typical of GCA). If you are having a flare then you are likely to feel tired, yes.

Pred makes your liver release spikes of blood sugar - and then you produce insulin to deal with it and it tends to swing the other way. But if you think it could be lack of food - it possibly is and have a snack before driving home!

I would ask for your bloods to be checked again and see if it has gone up or down. I had a sore scalp for a short time but it did go away on its own. If it gets worse though - be more insistent.

[jac-s in reply to PMRpro]

Yes I will give it a few more days at 10mg then phone doctor again, thanks

[karools16]

Hello jac-s....'he said top of head is not the usual area for GCA' REALLY!!! wHEN MINE STARTED 12 YEARS AGO, DURING THE NIGHT, and working as a carer, I thought my head was going to split open with the pain! sINCE THEN, I have had occasional bouts of tenderness at the temples, BUT, thanks to Pred, have never had that excruciating head pain again.Hope it goes well for you soon.

[jac-s in reply to karools16]

My head did not feel anything as bad as that, but more like tender sunburn, which thankfully is now a lot less tender but still not gone.

[jac-s]

Thank you for your replys they are very helpful. I will take more care to eat regular, I sometimes do long shifts and don't eat until I get home, I could get away with that in the past but obviously not now with pmr. I will see how staying on the 10mg goes for the next few days, my scalp feels better than on Saturday. I asked if I needed another blood test when I was on the phone to the doctor, but he said he prefered to go by symptoms which is fine but I think I would like the blood test done again to see if it was the cold that caused the rise, (the highest I have ever had recorded previously was 9) or if I am still raised. Trouble is can I just ask a doctor for a blood test? You know what it is like you phone reception, then have to wait for a doctor to phone back and I get a bit stressed while waiting, worrying to make sure I tell them everything I need to, then you get a quick 1 minute answer and thats it. If I could I would just go and pay to have regular blood tests as they are not being offered, just to give me peace of mind.

[Jackoh in reply to jac-s]

With regard to doctor ringing jac-s for phone appointment, I find writing points down that I want to say if and when he phones takes away the stress of forgetting something. In fact now I always write down my points for doctor's appointment and Consultant appointment. One because I find on this Pred I forget things very easily and two I want to explain my points in some priority order so that if my time runs out at least I've covered all the main points !!! Best wishes Jackie x

[jac-s in reply to Jackoh]

thanks, thats just what i did today and i have got an appointment for bloods first thing tommorrow

[Tonylynn]

Yes you should phone the doctor again and ask for an urgent appointment. GCA can affect any branches of the carotid artery and therefore can cause pain in scalp. It can also affect the ophthalmic artery which is why it can cause blindness or other visual disturbances.

If this is GCA you should be prescribed Prednisalone at much at a much higher dosage than 10mg day URGENTLY. If GP no use what about 111 or AandE.

[jac-s in reply to Tonylynn]

thanks i will phone doctor again, this illness makes you feel like you are playing russian roulette with your health, such a stress

[PMRpro Ambassador in reply to Tonylynn]

Being picky and in the interests of accuracy - the posterior ciliary artery provides the blood supply for the optic nerve.

[Tonylynn in reply to PMRpro]

And is a branch of ophthalmic.

[PMRpro Ambassador in reply to Tonylynn]

It is - but it is the post. ciliary artery that is more likely to be blocked by GCA.

[Tonylynn in reply to PMRpro]

Agreed. But could be any branch of opthalmic, which is why I was not specific and just put "opthalmic".