Possible flare

[Lynlea]

Hi all,

I reduced my steroids from 9mg to 8mg on 4th Feb. The last three days I have suffered from head pain which does not improve with paracetamol.

I have spoken to doctor asking if I should increase steroids who advised me to stay on 8mg as pain is not around temporals and to increase amitriptyline to 20mg, which has not helped with pain which is around parietal part of skull.

My question is do I increase to 10mg to see if it helps with pain and how long before should I stay on 10mg.

Thanks in advance for your advice.

[DorsetLady PMRGCAuk volunteer]

This link explains how to deal with a flare - but you do need to advise doctor that their suggestion has not worked -especially as they have told you not to increase -

healthunlocked.com/pmrgcauk...

[123-go]

I agree with DorsetLady that you should speak to your doctor again. GCA pain is not solely confined to the temples. Please try not to be alarmed as your headache can be due to a number of things but being proactive means better safe than sorry:

cks.nice.org.uk/topics/gian....

The information most useful for you is at the beginning of the article under ‘New Onset Headache’.

[PMRpro Ambassador]

Do you drop overnight from one dose to the next or do you use one of the slowed tapers?

Is it "just" a headache? No neck or shoulder pain?

[Lynlea in reply to PMRpro]

I drop overnight every month. 1mg drop. No neck or shoulder pain just head pain.

[PMRpro Ambassador in reply to Lynlea]

Have a look at the slowed tapers under tapering in the FAQs. And try just 1/2mg. And step down shouldn't be more than 10% of the current dose but some can't manage even that at lower doses and the change can take some time to get used to.

[Lynlea in reply to PMRpro]

Thank you will speak to doctor again tomorrow, will see what they think about slowed taper.

[PMRpro Ambassador in reply to Lynlea]

They'll poo-poo it - they don't understand it isn't slower - you still reduce the same amount in a month but go down a more gentle slope rather than jumping off the top step. This makes it more comfortable, removes part of the "steroid withdrawal" confusion - and above all, isn't slow when it works. It is approved by the top PMR expert in the UK, Prof Mackie in Leeds who has used it in a clinical study.

[DorsetLady PMRGCAuk volunteer in reply to Lynlea]

have a look at these before you go to doctor-

healthunlocked.com/pmrgcauk...

[Sharitone]

If you draw a blank with PMR/GCA being the cause of your headaches, you could try co-codamol. I find that paracetamol doesn't do a thing for any headaches, but often just 1 co-codamol will do the trick if taken early enough. Won't do anything for GCA though!