Dealing with GCA flare

[Carver63]

i am now 6 days into a self diagnosed flare up of GCA. currently on 6 mg Pred and weekly Actemra injection (Sunday). Increased pred to 7 to help headach on Saturday and today woke up to stronger pain and soreness in temple and increased dosage to 10. plus iboprofin 600 to kill the pain and soreness. feeling better now but i am concerned about controlling the flareup early when head aches first start. Any insight on this? this is my second flare in 3 months last one March 31 (at 9 mg Pred) am i coming down too fast?

[DorsetLady PMRGCAuk volunteer]

If you’ve flared twice in 3 months then yes I would say you are reducing too quickly…..and maybe you didn’t get the first completely under control.

This time around make sure you do, and then take the reducing a bit slower….Actemra may mean you can reduce the Pred a bit quicker than without it, but maybe not as quickly as you have been doing.

Plus you shouldn’t really be using Ibruprofen for pain….that’s what the correct level of Pred should be doing, and both together aren’t good for stomach.

[PMRpro Ambassador]

You need to report to your rheumy and stop self-diagnosing. Apart from anything else, it is unlikely ibuprofen would work for GCA so that must raise questions as to the cause of the symptoms.

However, a more pertinent concern is that the rate doctors expect you to drop will work for the 50% of patients for whom Acterma works - but fo rhalf of patients it doesn't get them to zero pred since there are 3 different mechanisms that can cause GCA inflammation, Actemra only works for one. If the other 2 are involved, you continue to need some pred and that may be the reason you can't reduce to these lower doses. You will get to a much lower dose and more quickly - but somewhere about the 8-10mg level seems common.

[Carver63 in reply to PMRpro]

what are the 3 mechanisms of GCA inflammation. can GCA affect the sinus circulation? confirmed 10 mg with Doc symptoms are easing. should this take a while ?

[PMRpro Ambassador in reply to Carver63]

IL-6 production is the main one, targeted by tocilizumab. T-cells are involved and at least a couple of other cytokines - but biologics can only target one and you can't use more than one biologic at a time. Pred, on the other hand, covers all exits ...

If you want some mind-bending bedtime reading:

ncbi.nlm.nih.gov/pmc/articl...

[PMR2011 in reply to Carver63]

Yes it can affect sinuses and other circulatory paths. My main GCA symptom (other than fatigue and low grade fever) was hoarseness. I also has a “sinus feeling” like you get in an airplane but had it all the time. Not quite a headache. It took me 1 1/2 years to taper from 20mg to zero while on weekly Actemra, and still had withdrawal symptoms.

[Carver63 in reply to PMR2011]

Thanks for responding I am still assessing the pressure on my right side temple area and around the eye. the discomfort and pain is still there after 9 days. going to see doc tomorrow, in case it is a sinus infection

[gca5 in reply to PMRpro]

Is it also unlikely that Paracetamol would work for GCA?

[PMRpro Ambassador in reply to gca5]

Very!

[christine2715]

Hi I generally don't get headaches with Actemra but I think like everyone you still need to reduce really slowly. 1/2 mg at a time. You can get 2 1/2 mg tabs Which with a combination of 1 mg tabs works. So I would only go down half per week. I also take one mycophenelate per day which supports reduction. Hope that helps. All the best.