Have been off Actemra for 6 months. Have generally been feeling good. No symptoms of PMR. Do get slightly hoarse with fatigue in the evenings, but no issues with low grade temp or night sweats that were my GCA symptoms. Went for routine follow up Rheumie apt today and CRP was checked: 116 (normal being 6 or below)!! My doc was concerned enough that he phoned me ( yep, he’s good!). I did have a Lyme titer drawn as had a tick a week ago, but have had no symptoms of anything. Get more tired in the eve, but have chalked that up to horrible daylight savings.
Anyway, wondering if anyone has had experience with “silent” GCA?
We’ll be checking it again soon, just waiting for Lyme to come back. Not sure next steps if that comes back negative.
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PMR2011
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Good question, but have been off Pred for over 2 years now. Was on just Actemra til April. Don’t know if that would affect the CRP either. Mystery…Thanks.
Hi PMR2011. My GCA has proven to be stubborn to treat and have been on many meds including Tocilizumab for one year. An indication for me that I am having a flare is fatigue. I can also have night sweats and weight loss. It is the fatigue that normally comes first. A blood test then usually confirms it is the GCA with a raised CRP. Of course other things may be at play so good you are being investigated. Good luck
CRP can be raised for all sorts of things so not necessarily GCA. CRP can be high in the early stages of Lymes which can take 2 or 3 months to develop.
Your CRP will have been low while on Actemra - just because of the way it works - so it is of little value during Actemra management and Actemra doesn't stop the disease process - just the inflammation.
However - LemonZest11 had a similar problem as she tapered her Actemra injections and LVV was identified.
But it could be something completely different, surely? My husbands CRP was 126, & suddenly he was diagnosed with his first ever gall bladder infection…never even head of cholecystitis before!! Hope it’s not Lyme disease, but…. We get a lot of ticks here, living in a forest.
Sorry, coming to this a bit late. Yes, I was on TCZ for almost 4 years when my rheumy asked me to begin to taper it. I had been off pred for just over a year with absolutely no problems … I thought!! Once we began to space the TCZ, the inflammation rose, or rather, showed in my blood tests. I had been on 4 weekly TCZ jabs for a few months when we checked my bloods and yes, soaring CRP and ESR. No pain or indication of any sort! Started back on pred, now down to 4 mgs, but I had to cease the TCZ because of neutropenia that wouldn’t come good. Managing at the moment without TCZ, and just the pred. I have the LVV form of GCA.
Thanks, very helpful and sounds very similar. I’ve never had a positive biopsy or scan but did have PMR for many years, so the assumption was it had to be GCA/LVV. I would like to know definitively if possible. Since PET scans are so difficult to get, I’ve thought about Thermography. It would be private pay, but much easier access. Am still learning more about it.
I know nothing about thermography, but a PET would be definitive for you. It would also reveal any other cause of unexplained inflammation. I’d be pushing for one, since you are in the dark. Might take a while, would you be prepared to pay? Your Rheumatologist should be concerned about the cause of increased CRP, are they pushing for a PET? In the meantime, have you recommenced pred?
Just read your biog, very similar to me. Back on pred, 25mgs for 2 weeks to get inflammation under control, and then the taper. Does that sound familiar?
Thanks LemonZest! Yes, he’s willing to order a PET but concerned it won’t get approved. Am rechecking labs in 3 days. He’ll probably restart Pred depending on results. Then TCZ as that worked so well for me before. Am worried the Pred will mask PET results tho. I was off all meds for 6 months, so very discouraging!
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