Pain down back of head and neck

[Maur1]

I have had GCA for almost 5 years with a few flares. I am now following the DSNS taper and am tapering from 3,5mg to 3mg Prednisolone. For the past week I have been waking up with pain down the back of my head and neck . It improves throughout the day but does not go away. Has anyone experienced this?

[DorsetLady PMRGCAuk volunteer]

It could be that you are just on the brink of tipping from just enough Pred to not enough Pred. 0.5mg doesn’t seem a lot, but it can make a real difference.

If it were me, I’d go back to 3.5mg - stay there for a couple of weeks and see if that helps....whilst also considering if it could be something unconnected to GCA. New pillows, new mattress- anything relating to sleep?

If it does help, then stay there for, say a month, and then try tapering again.

If it doesn’t help, then either it’s not a big enough dose to get a grip of things (and you may need to go higher) or it’s not a flare.

Obviously come back if things don’t improve.

[PMRpro Ambassador]

I get pain there due to my shoulder muscles being tight - and if my pillow isn't right that can contribute. The primary reason for mine is the myofascial pain syndrome that is part of my PMR - but managing the tight shoulder muscles is an essential for me.

[Telian]

It may be you’ve reached the optimum dose for your level of inflammation.

I stayed on 3.5mg for over 6 weeks before going to 3mg - couldn’t get any lower and stayed there for 18 months before having a flare- now on triple that dose and having more difficulties reducing second time around. Stuck on 9.5mg.

Listen to your body and don’t be in a rush.

I’m 6.5 years GCA and PMR.

[Maur1]

Thank you Dorset Lady, PMRpro and Telian for kindly responding to me with your advice.

[maria40]

Yes. This pain is one of the warning signals I usually get of a GCA flare. That it lessens during g the day can falsely lull me into thinking I have just lain awkwardly in bed. Do consult your GP if you can.

[PoolePerson]

I had that pain at the beginning but I didn’t have GCA and most pain disappeared on 10mg so it unfortunately sounds as if you need to increase the dose. My main advice after having PMR is to reduce the steroids at snail pace! I didn’t do this the first ten months getting down from 10 to 2 but after a flare up going back to 10 I took two years to reduce to zero in very small steps and staying on 3, 2 and 1 for along time. Hope that helps