Headache

[lyndamcw]

I have been diagnosed thru biopsy...with GCA I am on 60mg prednisone pet day but still my head aches and behind my ear and temple......is this normal and what can I take to relieve the pain

Thank you

[DorsetLady PMRGCAuk volunteer]

Hi,

You don't say how long you've been on Pred, it sometimes takes a few days for the pain to go. My head was still a bit iffy for a week or so, and I started at 80mg.

On the other hand it could be from the biopsy, if so then maybe ordinary painkillers will help.

If it's from the GCA then only Pred will touch the pain.

I can only suggest you try painkillers, and if the pain eases then it's probably the after effects of the biopsy. If they don't help at all, then perhaps you should speak to NHS Direct and suggest you take an extra 5mg tablet and see if that helps.

I obviously can't advise on your medication, but those are the options I would be considering.

[lyndamcw in reply to DorsetLady]

Thank you so much I have been on 60 for two weeks now and biopsy was 12 days ago....I thought the pred was going to be the magic pill !!

[PMRpro Ambassador in reply to lyndamcw]

Then you almost certainly need more and you need to get hold of your rheumy. Has the pred not improved the pain markedly?

[lyndamcw in reply to PMRpro]

It has at times subsided a little but it is still there and my eyes are slightly blurry as if there is oil in then and they are being pushed from the back! Very odd description I know!!

[patsy53 in reply to lyndamcw]

If your eyes are blurred you need to go to eye casualty. I had exact symptoms as you...blurred vision...felt like something was pushing at back of eye. Dr explained inflamed artery can cut off blood supply to eye leading to blindness. He stressed very much if vision blurred again that I had to go strsight to eye casualty where they would maybe hsve to inject steroid strsight into eye. He said I had been lucky that some patients can go blind immediately and if that happens there is nothing can be done to reverse sight. So please get your eyes checked asap. GCS PMR really sucks

[DorsetLady PMRGCAuk volunteer in reply to patsy53]

Yep, been there, got the t-shirt. Fortunately only lost right eye. Others not been so lucky.

[lyndamcw in reply to DorsetLady]

Is this quite a rare condition as I have not found any friends who have this GCA??

[DorsetLady PMRGCAuk volunteer in reply to lyndamcw]

Not particularly rare, but as it affects older people I.e. over 50 (used to say over 70) and can be confused with other illnesses in the early days, it's not very well known.

It certainly doesn't have a high profile like many illnesses such as cancer etc, and doesn't catch the public's imagination like a children's disease. That's why this forum and PMRGCAuk do a sterling job.

[lyndamcw in reply to DorsetLady]

It certainly is great on here it has been my bible.....thanks to all of you....one last question for the year...do you get very breathless...I have never had this problem before.x

[DorsetLady PMRGCAuk volunteer in reply to lyndamcw]

No, that side effect passed me by, but many do suffer from it. Again, the problem reduces as you decrease the Pred.

[lyndamcw in reply to DorsetLady]

Happy New year to you when it comes

Xx

[Zacsmimi in reply to DorsetLady]

YOU do a sterling job, mamn

[PMRpro Ambassador in reply to lyndamcw]

Amongst our age group it isn't that rare - but overall it does count as a rare disease, coming under the orphan category!

[DorsetLady PMRGCAuk volunteer in reply to lyndamcw]

Hi again,

Would have thought that things should have settled by now - in both instances. As it's a long weekend, my suggestion of contacting someone still stands as it appears that 60mg is not quite enough.

If you can't get any joy over the phone, then you have two choices really - either go to local A&E dept, they should be able to get Rheumy advice, or up your Pred yourself for a couple of days and see what happens.

I appreciate that puts the onus back on you, but I don't like the fact that you still have problems with your eyes.

Please keep us informed whatever you decide to do.

[lyndamcw in reply to DorsetLady]

Thank y you so much for your help.....do you really live in Dorset? I adore Dorset my sister in law lives in Merley Poole

. Thank you again for keeping in touch

[DorsetLady PMRGCAuk volunteer in reply to lyndamcw]

Yes, have done for the last 30years. Great place!

[PMRpro Ambassador]

It is possible that you may need an even higher dose - but DL has said it all otherwise.

[TomSC]

I just finished 3 days of steroid infusion and am 2 days into treatment with 60 mg of prednisone per day. The scalp and eye symptoms are down by 95%, but there seems to be something less intense (eye pain and scalp pain) lingering. I am also wondering if this is expected.

[PMRpro Ambassador in reply to TomSC]

If the pain is down by 95% I doubt you can expect much more - you don't always achieve total freedom from pain unfortunately. Sometimes it can take a few weeks to get to the best result and if there is any nerve damage due to the poor blood supply beforehand the nerves may take some time to recover, sometimes they never do. Patience is called for I think.

[TomSC in reply to PMRpro]

Thanks PMRpro,

I am new to GCA and have been doing as much reading as possible to learn about it. Most of the research sites are saying similar things about diagnosis and potential treatments. And it is hard to remember every single question to ask the rheumatologist about what to expect and what is normal. However, folks like you, who are talking about the realities of living with GCA are providing a real source of comfort and realistic expectations.

Thanks

Tom

[PMRpro Ambassador in reply to TomSC]

Most doctors don't actually know what to expect nor what is normal! I have sat in meetings with rheumies who are spouting something about PMR or GCA or pred - and have wondered what planet they are on! They rarely get the disability of living with PMR/GCA - which is part of the problem. They underestimate it.