How would you know if LVV is flaring during a taper if it's asymptomatic (no headaches or jaw claudication)? For those with PMR also, would the return of PMR type symptoms necessarily mean the large vessels are also inflamed? How would someone with LVV but not PMR know about a flare unless from blood work?I have just re-read my Petscan results from one year ago which showed LVV and PMR, but not cranial GCA (I had none of the usual symptoms for that) although my Internist asked for a TAB just in case and there were giant cells in evidence.
I'm happily tapering from 7 mg of Pred towards 6, via 6.5 and apart from fatigue, jelly legs some days and a wee bit of nausea and head spinning on occasion (adrenals?) my PMR is under control. I'm just wondering if that reflects the LVV situation too. I'm getting bloods done next week.
Has anyone had "just" LVV and experienced a flare, and if so how does that present?
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Dochaz
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If Sarah doesn't know - how should I? You could have a PET-CT to check I suppose.
But it IS a problem and judging by a PMR friend of mine maybe remaining on a low dose of pred or whatever is the safest approach. She had been on a low dose of pred for yonks but not really monitored - well, it was Covid - and last autumn got fed up with pred and feeling not too bad tapered to zero and off. At the beginning of February she collapsed and was in ICU with everything threatening to give up, her daughter was called back from NZ. She happens to be an anaesthetist and was with the doctors looking at the scans and noticed something in the kidneys. They THINK the low dose of pred had been keeping vasculitis under wraps but when she stopped it got going and caused organ damage. She's been on dialysis for a few weeks in the Big Hospital renal unit and is now home. But they had no idea what was going on at the time or why it had happened. They still don't really
I am trying to reduce from 5 mgs by half a mg and have been sleeping on and off all day and cannot keep my eyes open. I feel pretty viral - maybe I am? I think the Endo is more worried than Sarah who is all for the slow reduction - calmly confident. That story is alarming.
I had got to 6mg but after a couple of weeks the muscle pain in my arms was too much. Even making a cup of tea hurt with every grip action! Treating as a flare and debating where to go - I'll try 7mg again.
I too spent a year, actually 15 months, at 7 and credit that for a feeling of stability that has helped me to continue to reduce (DSNS) to my current 3/2.5 . My morning cortisol level is also reasonable. I hope PRO finds this helpful too.
Hi. I’ve got LVV and lingering but minor PMR symptoms. My pre-diagnosis symptoms were extreme fatigue, night sweats and generally feeling unwell. When in a flare these symptoms occur, sometimes before the inflammatory markers (CRP and ESR) rise. In the absence of infection or other causes I’d suspect LVV with any of these symptoms and get a blood test ASAP.
Thx for your input. I don't think I'm flaring ... it was just a question that occurred to me. My blood tests are monthly now, next one on Tuesday. So far, the results reflect the PMR symptoms. I've only had very minor flares and very slightly raised CRP.
Do your blood tests reflect your symptoms? I don’t think mine do, which makes me feel fraudulent. Luckily my Rheumatologist is more interested in how I feel.
I am fortunate that my CRP and ESR have always risen in response to my flares - apart from the time I was on Tocilizumab, which blocks that process. I managed to get to zero pred when I was on TCZ, but when the NHS ration of that came to an end, my Rheumatologist started me on Methotrexate alone. After 9 months of MTX, PMR symptoms started to return and the blood levels were rising, so I am back on 5mg pred and have discontinued the MTX.
Your question is exactly what I was wondering. How would I know if the LVV was/is also active? I am relying on my 3-monthly blood results to monitor the situation. 🤞🙏
Without the PMR component that acts as an alert system, LVV seems to be a very silent condition. Regular blood work is the best we can do to keep an eye on it. Best of luck to you ☘
my signs were constitutional. A general “fluey” feeling, heart seems to “pound” with activity even though heart rate okay, and interestingly I would get hoarse (more so when I was tired). I was lucky because my inflammatory markers rose too. And of course, the fatigue. I’ve been on meds 12 yrs now, Pred for 8 of those 12 yrs for both PMR and GCA. Twice came off all meds and flared with skyrocketed markers. 🙁 TCZ and I may be BFF’s!
I have GCA and had a flare in November 2021 it followed on from a lot of rubbish and stress coming from family members. I felt lethargic, tired very under the weather generally, headache and aches and pains in shoulders neck and back. Very unpleasant and scary. I had bloods done and the inflammatory markers where in double figures again. My rheumatologist did a scan which he said showed it was a flare and up the pred again to 20 mg
I was on 9 mg. I am sure it was caused by family upset as only they can do when they get going and a new doctor. I am now on 6 mg with the help of Methotrexate due in a weeks time to go to 5 mg so far so good. I hope you are doing ok.
Wow. I would like to know too. I have the same diagnosis as you. Rare, I was told. Usually, as I taper (on 5th or 6th go now) I do get PMR type pains. So far, on a different, far slower, taper programme, it is going well.
In France it's considered a rare condition. The "official" numbers given are 9/100,000 cases per year. The internist who diagnosed me said he saw about 4 cases a year, however, and I'm pretty sure he hasn't got 50,000 patients! I'm also pretty sure that a lot of people go undiagnosed or misdiagnosed. It took 5 months for me to get a diagnosis from my first GP appointment to an eventual TAB. That's not counting the years that PMR pain was creeping up on me before sudden extreme fatigue set in and sent me looking for a reason.
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