GCA headache

[jeannette67]

Have had a very bad headache for 3 days now. Feels very similar to the headache I had with GCA although not quite as bad.Have been on 3 mg pred for the last 4weeks so don't think it's steroid withdrawal. Have upped to 5 mg pred today do you think this will be enough ? How long should I give it if this works before reducing again? I'm really gutted because I've been feeling so well.

[PMRpro Ambassador]

If you think it could be the GCA you really do need to speak to a doctor about it. There are other things that are very similar.

Basically though, if the pred takes the pain away it is probably enough, all the pred does is manage the symptoms

[DorsetLady PMRGCAuk volunteer]

Hi Jeannette,

Hope you get some relief from 5mg, but it might be wise to get blood checked soonest, and of course if you get any other eye problems then do something about it.

Trouble is, we are all very aware of the GCA headaches, and rightly so, but very often they are something else completely - and we end up worrying unnecessarily.

Just monitor things, it may just be that you have gone just below "your" level of Pred required, but if that were the case then I would have expected other symptoms as well.

[jeannette67 in reply to DorsetLady]

Thankyou both for your comments it's nice not to feel alone.

[granny-b]

I have had this as well at 4mg. My wonderful consultant even did an ultrasound artery scan. In my case after several anxious days the headache went away... I believe it was a general 'anxiety, unwell and grumpy' but definitely similar to GCA headache.

I now take paracetamol if I feel 'unwell' at a steroid reduction.

I hope you are not having a relapse.

[jeannette67 in reply to granny-b]

Thankyou did you up your steroid ? Paracetamol not touching the pain taking 500 co codomal.

[granny-b in reply to jeannette67]

No. I don't change my steroid dose unless my consultant says so. I am assuming you mean 500 dose rather than tablets.

I know it sounds odd but when I had GCA headaches absolutely nothing got rid of them until I took steroids. I had several painkillers on prescription before the GCA was identified.

[PMRpro Ambassador in reply to granny-b]

It doesn't sound odd - there is no painkiller that will deal with GCA headaches. You have to have the pred to relieve the cause, the swelling and poor blood flow. And it is the only thing that will do it, that is why it is used and not anything else.

[karools16]

Ditto granny-b. When I was diagnosed 12 years ago, with GCA, the headaches I had were only contained by a starting dose of 60mg Pred. At present, on 3mg, tapering to 2mg.