Hi to all you knowledgeable good people. First time post although I've been following for a bit now. I'll try to be succinct. December 2019 went for routine blood work prior to cardiology appt. CRP 84 and the game was afoot.... I had no symptoms at all but within a few weeks had battery of tests including chest and abdomen CTs, colonoscopy, liver scan, X-rays, cancer blood marker draws and a slew of other esoteric blood tests. Nothing - only elevated CRP and ESR. In April 2020 shoulder and neck pains, followed in 3 weeks by thighs and hips (apparently things had been brewing). Was diagnosed with PMR and started on 20mg prednisone which worked within 2 hours (I was actually flying from relief). Had ultrasound of temporal arteries that was neg, After doing my due diligence, begged for a PET scan (to rule out aortitis) and scheduled for one only to be shut out due to COVID shutdown. Finally got it in June 2020 and showed LVV subclavian. Prednisone bumped to 50mg. and followed reduction schedule that appears to be same as advised on this forum. Sept 2020 had MRAs of chest and abdomen that showed no improvement. Started Actemra in March 2021 and have been on monthly infusions since. Subsequent MRAs show improvement. On November 1, 2021 I stopped Prednisone. At the end of January 2022 started getting thigh pain and in March bicep pain - definitely not as bad as original PMR symptom pain, but it has continued and I suspect it's a flare. My Rheumy says it can't be PMR as my ESR has remained low throughout treatment. She concedes that CRP is not a good indicator of activity while on Actemra. However, she does not believe that the same goes for ESR. She suspects OA and I am having X-rays soon. I have looked for empirical evidence and have not been able to find studies that specifically state ESR as not being a valid test. Yes, I have found plenty studies stating that CRP cannot be relied on to predict activity but none specifically addresses ESR in the same way. I know about the T cell vs IL-6 activity and think I'm probably part of the @50% that might not get relief from PMR while on Actemra. I would appreciate it if someone can point me to a scientific publication that indicates there can still be disease activity even when ESR remains low. I even spoke to a Genentech (Actemra manufacturer) representative who sent me clinical trial results but only indicating that both CRP and ESR remained low during treatment (not suggesting that they aren't valid indicators of flare). Thanks in advance for your help. You're a great bunch.
ESR as a predictor of disease Activity while on A... - PMRGCAuk
ESR as a predictor of disease Activity while on Actemra
I am horrified at the ignorance of a rheumatologist who does not know that ESR and CRP cannot be relied on to assess disease activity in patients on Actemra. CRP is one of the factors that contributes to the ESR - high CRP results in raised ESR. ESR is notoriously unreliable anyway - since it can be normal in patients who do not mount the acute phases response to inflammation and raised for a whole raft of unrelated reasons.
This
ncbi.nlm.nih.gov/pmc/articl...
points out that CRP and ESR may be in normal range even in patients with RA disease activty assessed by other factors.
There is a paper about ongoing disease activity leading to vascular damage despite the patients being on tocilizumab - but I don't have the reference to hand and no time just now to look for it. I will try later. But NOTHING escapes the fact that the clinical trials showed only half of patients are able to get off pred entirely despite tocilizumab.
Thank you PMRpro. Although I'm familiar with the nih and one of the oxford studies, I hadn't seen the BMJ or nature articles. I will abstract as much favorable information as I can from all the studies that you and Dad2Cue sent me and submit to my Rheumatologist. Of course, I do not want to restart Prednisone if not needed; however, the symptoms are there and I do not want to facilitate the activity by allowing the drips to overflow the bucket.I know that PMR and LVV are two separate entities and yet we are all aware they are very closely related. I feel that if I don't treat the PMR symptoms, that that will exacerbate the vasculitis activity (if that makes any sense).
I sincerely appreciate and admire you for the time and effort you and others put in to educate and guide people with PMR.
I (and my rheumy) don't consider they are separate entities - they are points on a spectrum and people can have LVV that only manifests as if it were PMR. Just depends which blood vessels are involved - it's a patchy disease, the butter is not evenly spread over the bread so there are plain bits 
The PMR symptoms are due to the effects on blood flow of the inflamed blood vessels. I need a board and colured pens ...
I get it - thanks. The two points on a spectrum is more like the way I think about it too. No need to search for those pens - I can color in even if the lines get blurred. R'cvd X-ray results = no OA, so I have a chance to convince my Rheumatologist that the symptoms are PMR related. Hopefully I'll be able to keep the dosage of Prednisone limited. I'd like to venture to your side of the pond in the autumn if possible and walk another camino. We'll see how things go.Thx
Very interesting study. Thanks for sharing.
Do any of these help? I think though there IS a positive role for TCZ in PMR - the 50% in GCA who still required some pred, required a far lower dose
ncbi.nlm.nih.gov/pmc/articl...
says
"TCZ plays a key role in the blockage of the pathological pathways leading to the development of the disease, but, on the other hand, its mechanism of action makes monitoring of the disease using “classical” inflammatory markers quite doubtful. CRP is an acute-phase protein produced by the liver in response to inflammatory stimuli, particularly via IL-6; thus, low serum CRP levels during TCZ treatment may underestimate disease activity."
They don't specifically mention ESR - just as "classical" inflammatory markers.
This
says
"As a consequence of the blockade of the IL-6 pathway, acute-phase reaction proteins (erythrocyte sedimentation rate, C-reactive protein and fibrinogen) remained in the lowest range during the TCZ treatment period."
i.e. TCZ suppresses ESR
This
academic.oup.com/rheumatolo...
never mentions ESR but says "Neutralization of IL-6 blunts the acute phase response. ".. No acute phase response means no raised CRP and, by extension, no or less raised ESR.
I find the comment about the delayed effect and advice to keep GCs higher in the early stages of treatment interesting - some rheumies are telling patients to reduce their pred dose considerably from Day 1. Mine says wait at least a few weeks.
elitechgroup.com/news/physi...
points out that high blood protein raises ESR. The main factor is fibrinogen - and CRP and fibrinogen are closely linked:
nature.com/articles/1002233....
says " concentrations of CRP were strongly correlated with fibrinogen levels and age"
That's been a fun read 
Thank you Dad2Cue.Interesting - the nih article re the concern about appropriate concurrent use of ESR and CRP. It ties in with PRMpro's comments about fibrinogen .
As to the case report, I can only say that emboldens my determination to get my Rheumatologist to agree with me about the ESR. Mind you, I respect my Rheumy, who was trained at a leading research institution and has sufficient years of practice. She even referred me to the head of the vasculitis department at the teaching hospital in town, who concurred with her plan of action. My only complaint is her insistence that my pains are due to something else. I must admit that I am probably not the easiest patient as I continue with activities that might be considered to exacerbate my predicament (playing soccer for one, although I gave that up for an extended period with no change).
On a somewhat unrelated issue - I would prefer SC injections to my current infusions, but Medicare doesn't cover the injections. I know from your previous responses on this forum that you were able to get the injections covered. Any secrets?
As I stated above to Pro, I am very grateful for the energy you and others put into helping people understand and live with these autoimmunities.
Best
Thanks again, Dad2Cue. Please refresh my memory - are you on Prednisone along with Actemra?
It looks like you have had some excellent responses from people far more knowledgeable than myself. When first diagnosed, I was on 60mg prednisone, eventually tapering to 0 ever six months. During this time I also started on Actemra. I was doing great, and then the Actemra shortage hit. Rather than go back on prednisone, i decided, with my doctor, that we'd give it a try without either prednisone or Actemra. Unfortunately, after about 6 weeks or so, I had a bad flare which resulted in going back on 40 mg prednisone and resuming Actemra, as it became available again. This time I have tapered much more quickly, 5mg/wk, and just completed my prednisone this week. I will now be on weekly injections of Actemra indefinitely. I'm hoping the Actemera will be enough, and I won't have another flare, as it was pretty bad. So, we'll see. The prednisone did what it was supposed to do for me, and hopefully the Actemra injections will be enough moving forward.
Good luck with the Actemra. I hope you are able to stay off the pred. I’m hoping if I have to go back on it’ll only be for awhile and at a low dose. During the shortage I was given the injections which I would prefer, but since have gone back to infusions. Take care.
I misspoke when I said indefinitely. My rheumy actually though it would be about 3 years. I had such a bad flare in March when I went off Actemra and was not on prednisone, that I don't want to go through that again. I'm also not sure how, or exactly when, I might taper off the Actemra. I just know it will be awhile.
Dear Jumpe, my rheumy tests for serum calprotectin - it is still rather experimental but there are indications that it better reflects the disease status under Actemra (at least in RA patients) then acute phase reactants (CRP, ESR).
References
pubmed.ncbi.nlm.nih.gov/262... (RA patients)
rheuma-schweiz.ch/index.php... (in German - also reporting on giant cell arteritis)
Thanks DeepThought. I will definitely check that out with my Rheumatologist. I hope it’s available here. I appreciate the info.
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