Recently diagnosed with GCA. What the hell ! Update !

[GlennStephen]

Hello everyone. It’s been a roller coaster of a ride the last 2 months. I am starting to feel better. I am taking the Actemra and am down to 20 mg of prednisone a day. The headaches had continued and even seemed to get worse. The rheumatologist said my inflammation levels had returned to normal and he was unsure why my headaches have increased. He ordered a MRI and MRI angiogram of my brain to see if something else is going on. That will happen in 2 weeks. About a week ago, my headaches started to quiet down and I feel somewhat normal. I actually got a lot done around the house this weekend. I guess that’s the nature of this beast. I’m knocking on wood and hoping that my run of feeling better continues and the MRI comes out negative. Thanks everyone ! I’ll be in touch, hopefully with good news after the MRI.

[DorsetLady PMRGCAuk volunteer]

Hi,

Even with Actemra, reducing from 60mg to 20mg in 2 months is still quite speedy, and GCA is quite likely to flare within the first 6 months….think that’s what it may have been/is.

Good news that the headaches are getting better, but just because your inflammation markers are normal (according to Rheumy) doesn’t mean your illness is gone…which he seems to be implying!

[SheffieldJane]

I also have headaches, especially when I reduce Pred whilst on Actemra. I didn’t go as fast as you, but fast enough.I am not sure why our doctors are so surprised. Good luck with the MRI, mine were all clear.

[Kendrew]

Hi there. Obviously any headaches need investigating because of the risk of GCA.....or other undiagnosed conditions but just wanted to say that you can sometimes experience head pain as a result of the steroids as I do! Each time I start the next slow taper, I experience head pain at the base of my skull that radiates up and over scalp to above eyes, temples, cheek bones. Once settled on new dose, they disappear. They've been fully investigated several times and in my case, are linked to the pred. I also seem to experience them more when between 10mg and 7.5mg. I obviously don't know what's causing your headaches, but it is possible it could just be the pred. Hope you're scan results come back clear as I'm sure they will.

[Rugger]

I'm also on Actemra for GCA-LVV. The inflammation levels are normal because that's the effect of the Actemra, keeping the inflammation under control! It doesn't mean that the GCA is in remission - your rheumatologist should know this. My rheumatologist doesn't even check my CRP or ESR because she knows they will be normal. Scan results and symptoms such as headaches, are what give us more information.

Best wishes and don't forget to pace yourself with the housework!

[PMRpro Ambassador]

Do ask your rheumatologist if he actually understands how Actemra works: the ESR and CRP do return to normal because the mechanism of Actemra is to stop the production of IL-6 which is what causes the rise in ESR and CRP. They are, therefore NOT valid to monitor the disease activity and that is usually done on the basis of the symptoms. There are two other mechanisms for the inflammation in GCA which are not controlled by Actemra - which is why only half of patients are able to get off pred altogether, they need some pred to manage that inflammation.

It does worry me that doctors are using a drug where they obviously haven't done their homework. That ESR/CRP can't be used to monitor disease activity and that not all patients are able to get to zero pred is well known and widely written about.

[Seagu11]

Sorry , Glenn have not taken Actemra, however I was on Steroids for two years ,after which I recovered despite the sudden death of my husband and major surgery to replace my hip. My main problem now is loneliness and there is no tablet for that ! Good Luck you can get better 🤷Mary and Chico 😻