Neck ear headache

[Jamie345]

I keep getting a sore right ear can't touch the outer rim head pains and nape of my neck aching I have GCA/PM not doing well as still have inflammation but waiting a week now for my rheumy or his secretary come head nurse in rheumatology over a week now to let me know what he wants to do, I'm on 12/half m of predisinone and I was told not to put myself up to 15m like I did as I felt so ill! But I notice others on this forum do raise the dose themselves , not sure what to do I am hoping to make an appointment soon for a second opinion from the private doctor in chertsey as that's very close to me and he's had glowing reports! I just feel is it going to make life very uncomfortable with my present rheumy but end of the day I just need some quality of life back any help really appreciated thank you!

[Primarose]

Hi Jamie345

It does sound as though you are having a flare here. I was on 10mgs when I had a flare, my doctor said to go up to 12.5mgs but that didn't do it so I went up to the dose I was OK on i.e. 15.mgs. I improved greatly on that dose so stayed there for a couple of weeks and went down 1mg at a time.

Hope it helps!

[SheffieldJane]

Can you see your GP more quickly just in case you have a middle ear infection? It does sound to me if your GCA symptoms are poking through, though and the only remedy, as you know, is more Pred. Some of us are given a lot of autonomy with our dosing and tapering. I would be very tempted to go up to a relieving dose. If your Rheumatology Nurse is to monitor you so closely then he or she needs to be available, especially with a serious disease like GCA.

[Telian in reply to SheffieldJane]

Well said Jane, I agree entirely..

[PMRpro Ambassador]

And to add to the other comments - if you are thinking of going to Rod Hughes at Chertsey privately it is time to investigate that. He has school-age children and even doctors go on family holidays!

[Jamie345]

Yes I was thinking of seeing him, I'll try on Monday if not I'll have to wait till holidays are over, many thanks

[ValFF53]

Just a quick reply.

I managed to get a second opinion with Dr Hughes in Chertsey on the NHS although it did take a bit of convincing my GP to refer me. I live quite a long way from Chertsey, too.

Hope this helps

[ValFF53 in reply to ValFF53]

And I didn’t have to wait long to see him

[Mikb]

I had a flare at 12.5. Took myself up to 15 and called my rheumie and he fit me in right away. Long story short I ended up back at 40. Tapered faster down from there once symptoms subsided and I am now currently at 8!

[Telian]

Rheumy asked me on diagnosis if I'd lost weight, he said it is not unusual for some but I never have, having said that, I eat whatever I want and don't put weight on.

All the best to you.