GCA?

[Blackcatlover]

GCA?

Have had a headache for the last ten days. I am currently taking 4mg of prednisone and injecting Actemra every four weeks. I upped my prednisone by 5mg of pred for ten days with no improvement. Head feels tight and back of head and sides are sore to touch. These symptoms seem to change, not always the same intensity. Had blood work done yesterday. Sed rate went up from 2 to 9. CRPhas gone from point 6 to 8. Rheumatologist is not around and his service said he would be back in two days. I have enough pred to increase to 40mg if that is the right thing to do. Scared and feeling deserted.

[SnazzyD]

Hello there. UK about to go to bed. I’m sorry you’re suffering. Given that the headache has persisted for 10 days, I think you need a medical opinion really just to rule out other things too. How bad is the pain and when you say it changes, changes how? Does it ever go away and does anything help? What about at night or when you lie down?

[Blackcatlover in reply to SnazzyD]

Thanks for your reply. Pain goes from really there and worrisome to just a background kind of pain. At night I can feel the pain when I lie on my back but not on my side. No swollen veins on my temples when I look. I’ve called a hospital in Boston but I need a referral and my doctor isn’t around - a catch 22.

[SnazzyD in reply to Blackcatlover]

It’s been said, you need to see yourself as an emergency. That sort of headache location was the first type of pain I had in the early days of GCA.

[SheffieldJane]

Well this doesn’t sound right does it? Do you have any other GCA symptoms such as pain in the jaw, while chewing, or issues with your eyesight? I think I might brace myself and prepare for several hours in A&E being sure to explain the potential consequences of GCA not being treated as the emergency it could be. This is so unfair, you have already been through so much, but you must grasp the initiative in the absence of qualified medical advice. I did this a few weeks ago and I was treated with the utmost seriousness, including a CT Scan of my head. I spent 7 hours in A&E and did not feel that it was time wasted. The GP advised me to go. My symptom was a severe headache in the occipital area at the back of my head. Good luck, let us know what happens. I would even call an ambulance, especially if visual symptoms occur.

[Blackcatlover in reply to SheffieldJane]

Thank you for your caring reply. Not sure what to do next. I have 10mg prednisone that I am tempted to use. I will try to ride out the night and hope Boston gets back to me. Sleep well Snazzy and Sheffield Jane.

[Hidden in reply to Blackcatlover]

Good luck Blackclover. I've just replied to SheffieldJane re your message. I do hope you get sorted. GCA is so frightening.

[Hidden in reply to SheffieldJane]

Strange how GCA can mimic other probs too. I've suffered occipital pain in both bones for yrs and yrs, well before 2019 when diagnosed with PMR/GCA. Hard to know what to do when nobody about to advice medically. If I were in her shoes I'd be inclined to take at least 20mg to be on the safe side. 10mg helped me when GCA showed up almost 2 weeks ago. To get to 4mg and have to start all over again is such a shame for her. But once things are under control again and inflammation is down she could drop by 10mg fortnightly, then do a slower taper of monthly like I'm currently trying.

[SheffieldJane]

If I self medicated I would worry about destroying the diagnostic evidence, on the other hand 40 mgs is probably what they’d give you. See how you are in the morning. The GP can send you to A&E.

[DorsetLady PMRGCAuk volunteer]

Hi, Just seen this, his are you this how are you today, if no better please and don’t get a reply from hospital then please go to ER/ED. Whether it’s GCA or not, as SnazzyD says a new headache lasting this long needs to checked, and keep us informed please..

[PMRpro Ambassador]

If you are on Actemra, then the ESR and CRP are not valid indications of inflammation because of the way it works.

However - half of patients with GCA are unable to get off pred entirely, that is because GCA has at least 3 mechanisms which lead to inflammation and not everyone has GCA caused by just the IL-6 mechanism which is what responds to Actemra. That half get to a much lower level of pred, 8-10mg/day is a common sort of dose, but not off it altogether. It could well be that you are one of them. I have been a bit surprised at some rheumies insistence that patients will get off pred altogether - it was very clear from the clinical trials that that was NOT the case. You might - but you might not.

If the headache persists, I think you do need to follow the "add 5mg to the dose where the flare appeared" - at the very least and at least until you can speak to your rheumy. Mind you - if they are not aware of the intricacies of GCA, they might not agree.

[SheffieldJane in reply to PMRpro]

I may have missed something but blackcatlover’s diagnosis appears to be PMR. As she is in America she is being treated with Actemra every 4 weeks and low dose Pred. I am assuming that the threat of GCA would be a new diagnosis, perfectly possible on her current low meds. Therefore I stand by the fact that she should be treated as an emergency with a new headache.

[PMRpro Ambassador in reply to SheffieldJane]

But the symptoms being complained of are GCA. I wouldn't have worried it if it were PMR-type symptoms. And the problem will remain that she is on Actemra and non-rheumy specialists will almost certainly not be aware that the wonder-drug isn't a 100% answer to GCA inflammation if the google it and don;t find the fine print. But it DOES deal with the majority of GCA inflammation . She probably SHOULD be treated as an emergency - but turning up at an ED when on Actemra is very likely to result in not a lot of action. The system is very different - not necessarily a tame rheumy specialist on hand at the end of phone as they are in the UK.

[Luciejc]

Does your rheumatologist have a doctor that covers for him? or does he belong to a group? I'm in NYC and am able to use a portal to access my doctor or get help from the Rheumatology department at her hospital. I have GCA and had non-stop headache, jaw and neck pain before a biopsy confirmed my diagnosis. Good luck!

[Blackcatlover in reply to Luciejc]

Thanks so much. I contacted my doctor’s office and spoke to his nurse. She put me in touch with a doctor who covers for him. He’s not a rheumatologist and he called my doctor to fill him in. My rheumatologist called me this afternoon and set up a temporal artery ultrasound for Friday at the hospital. He also ordered high dose prednisone for me to start on Friday if I can hold off. I’m to take 40 mg for three days, 30 mg for three days, 20 for three days and then stay on 10mg for a month. I’m also going back to Actemra injections every two weeks. I am feeling so relieved that I finally have a plan. Thank you all for your support. Don’t know what I would do without you all.❤️

[DorsetLady PMRGCAuk volunteer in reply to Blackcatlover]

Hope all goes okay, sure you’ll let us know in due course.