hi everyone. I’ve been reading your very helpful posts for a while since my urgent care team first suspected some form of LVV after I presented with left arm claudication as my only symptom alongside CRP of 60 (which has dropped to 30 yesterday, for unknown reasons).
Having spoken to the doctor on the vascular is team after a PET scan showed inflammation of subclavian, brachial and aorta large vessels, I am due today for my first of three methylprednisolone and then a weaning dose of oral prednisolone.
The doctor says my immunosuppression options in LVV include Methotrexate, Tociluzumab and Cyclophosphamide but he thinks the Cyclophosphamide is his preferred option due, he says, to the severity of the narrowing.
I can’t find any posts on this approach with LVV and wondered if anyone had thoughts or advice on how to deal with its particular side effects?
Appreciate everything I’ve learned on here so far!
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You might find people who have been on cyclophosphamide on the VasculitisUK forum or the LupusUK forum. I'm not sure we have anyone as it isn't commonly used in GCA and we don't have a lot of members with LVV diagnoses as yet, though the number is growing almost daily. It is mostly used in oncology (cancer therapy) but I don't know if the doses are different - though I suspect they are very much lower when used in rheumatology.
In your bio you say the consultant says you are somewhere between GCA and TA - I assume by TA he means Takayasu's Arteritis as TA often also mean temporal arteritis, and that is GCA!
I'm really looking forward to hearing more about your experiences - because I don;t think you would be the only one to be offered cyclophosphamide.
Not LVV specifically, all types of vasculitis, most of which are much rarer than PMR/LVV/GCA. It just so happens this is a specialist site for PMR/GCA and now LVV is being touted as a continuum in a spectrum of the 3 versions of the disease which do seem to all be related.
In fact, quite a high percentage of patients diagnosed with PMR also have LVV or GCA signs and symptoms IF they look for them but they rarely do. And the same applies the other way round, patients who clearly have GCA also show signs of LVV and can have PMR symptoms. The symptoms of LVV can sometimes be very vague or just PMR-like and since they don't screen everyone with apparent PMR, it is missed. A lack of radial pulses is pretty noticeable though and so they investigate!! That is usually down to subclavian stenosis or subclavian steal syndrome - and there are various reasons for such a stenois, the effects of vasculitis being only one.
The acronyms are a pest sometimes - it is bad enough when one appears in several contexts but when the same one can be used in the same area it is really annoying!! I try to remember to define it the first time I use it in a reply but still forget.
Hi, I don't know how similar my experience is to yours, except to say that I too have aortitis ( LVV) which was picked up by a CT scan after months of vague symptoms, including PMR. My initial CRP was 132, and I was told that the inflammation was extensive. I was admitted and given pred intravenously for 2 days in hospital, followed by oral pred and Methotrexate. I wasn't offered either of the other meds and for me this combination worked. I stayed on pred for 14 months, tapering every 28 days, and came off it in Nov 24. My CRP is now around 6 and I am largely symptom free but still on 20mg of Methotrexate a week. My consultant will consider reducing that in the summer if my CRP stats low.
Hope this is useful as a bit of a positive story. Good luck!
Dance62 I am concerned I have aortitis and wanted to know what your symptoms were and what they saw on the CT scan? I had a PET scan a month ago (when my chest pain was mild) but it only saw mild FDG uptake in the thoracic aorta and it was not diagnosable as LVV. I have a chest CT booked for next week that I am hoping will shed light.
I had a range of non specific symptoms which started off with neck, head and shoulder pain (later found to be PMR) and over the course of about 4 months I lost a lot of weight, had constant racing heart and palpitations, was absolutely exhausted all the time and very anxious, but no chest pain or anything like that. After several rounds of blood tests hixh showed raised inflammatory markers I was finally given a CT scan during which they found extensive inflammation in the large blood vessels in the aorta.
I was put on a lot of medication but now, 18 months since diagnosis, I'm only taking Methotrexate, folic acid and ferrous fumarate and I feel well. More importantly, my inflammatory markers are now stable and low.
Thank you for sharing, that's hugely helpful - and I'm so glad to hear you're doing well these days! It's encouraging that a CT scan picked up aortic inflammation as I was told it's not good for that. It gives me hope that's I'll get some answers - either way - with the CT. All the best!
Thank you. When I had the CT they had exhausted all other possibilities in terms of finding what was wrong. They were looking for cancer which thankfully they didn't find, but the inflammation was so obvious that ten minutes later I was in front of a consultant rheumatologist who diagnosed it. I hope you get a good result.
That's where I am - 3 months of tests and no answers. And I have the head, neck and shoulder pain, jaw pain and now recently left-sided chest pain - yet inexplicably normal on tests! Hoping the CT will shed light, and if not biopsy.
I had my first large IV dose yesterday of pred and despite all my fears, I slept well, felt nothing other than a mild headache and now a back pain I had is completely gone.
I realise it’s ridiculously early days but I’m feeling hopeful. Of course that could be the Pred talking.
I also have LVV diagnosed via PET CT - and had 3 days of 1 gram methylpred- be careful with that. You will feel super human, and I totally over did it and messed up my muscles to the extent I couldn't walk properly for months after until they recovered. I have always had back/hip issues from slight scoliosis and one leg being longer than the other, and the dramatic loss of pain was bliss.... coming back now I am on lower doses sadly, but trying to do gentle pilates
Ha! Good advice! I was happily surprised to find myself feeling pretty good after the first dose. Luckily I have the cannula in until the last day which is preventing me from doing too much as it pricks if I move my arm.
My plan is to start with a very gentle regime of 12 minutes of yoga and as much low resistance rowing as I can stand. I had only just started rowing in November when the claudication hit and was only doing 5 minutes a day and even then had to row for a minute and rest for 30 seconds. So, I’m starting from a rather pathetic regime in any event!
Gosh, that’s a big question. I hope this isn’t too long. I believe due to a lot of stuff happening over the previous 4 years, husband dying very unexpectedly, only daughter moving to Hong Kong with her family, 3 pneumonias, major work issues that I had never encountered before in 40 years, and then the final straw I believe was Covid, before covid was a thing here. I was working on women’s tennis and the team I worked with had just returned from Shenzhen in Nov 2019. A few months after what I believed to be covid, I was getting very high heartrate issues where I had to lie down, a constant low grade fever, extreme sore throat, very swollen glands which went to my clavicle and under my arm pit. Vice like grip in my head with stabbing pains behind my eyes, constant stomach pain where I sat with a heat pad the whole time and constant shoulder and back pains. After a few months I didn’t have the energy to move from my sofa to the kettle, which was 6 steps away. Lockdown did me a huge favour though, one, no one was asking me to work, plus, I got money from the government as I was self employed so the pressure was off.
It wasn’t until August 2020 when my sister (who never really reacts to anything) said I had to go and see the doctor that things happened and then October to get a diagnosis. I had lesions/masses on my lungs, liver, intestines, throat etc, and had 3 CTs, 2 Ultrasound, 3 MRIs, I echo. (I have had over 20 scans to date) At one point I was under 8 different consultants as they were responding to each scan I was having. Each consultant had differing opinions until the Infectious Diseases consultant decided to take over my case and sent me for a PET CT. I got back from the PET CT at midday to be rung at 2.00pm and told I had something called Large Vessel Vasculitis and to go immediately to the hospital for pulse therapy… I had no idea what they were talking about but was grateful for a diagnosis as by this time I think most of my family thought it was a cancer somewhere.
The PET CT was reported as extensive inflammation from the aorta to all of the major branches down legs and arms. Intense uptake throughout the wall of the entire aorta, plus subclavian common carotid, and common iliac and femoral arteries bilaterally. Most intense in the subclavian with liver also shown to have inflammation.
The reason I mentioned legs is because after the pulse therapy followed by 40mg of pred daily I thought I was super human and totally overdid it. My muscles objected to the point I then could hardly walk for over 4 months which actually was worse in some ways and I just felt there was no point. So gentle exercise, regardless of how good you feel, would be my recommendation.
Sorry this is so long!!! But hope that was what you were looking for.
Thank you SO much for the detailed reply! Sounds like you've been through a truly challenging time in the last few years, not only healthwise but with the loss of your husband and relocation of your daughter. I'm sorry that's happened to you. It's interesting the MRIs and CTs didn't find anything conclusive until - bang - the PET scan. I've heard the phrase 'lit up like a Xmas tree' and seems like this applied to you. I have "mildly prominent" uptake in my aorta and subclavians, so I'm sort of being dismissed, despite my symptoms.
Ah time has passed I guess, my husband died 9 years ago and my daughter returned to the UK in 2022, mainly due to the very strict rules in Hong Kong regarding Covid. They were taking young children away on their own without their parents and some died alone, I think that was the final straw, so it's great to have her and my grandchildren back (they live in the same street!)
The scans did seem to show things but clearly they didn't think that was the whole answer. I had a stiff liver, but after a year on pred that seemed to disappear, whether that was coincidence or not I have no idea. It also showed a benign tumour on my parathyroid and so I finally had that removed a couple of years ago.. I assumed I must have lit up like a Christmas tree as you say, as the person doing the scan was very sweet to me afterwards which perhaps meant she saw things on there, hence sending it off for a report straight away.
It sounds very frustrating for you though. I would say mildly and prominent contradict each other? Strange they have not responded to that to even try you on pred to see how you get on.
I'm glad things are on the up, with your daughter and grandkids close by! Yes, mildly and prominent ARE contradictory. All a bit vague. I think radiologists like to sit on the fence. I've been offered pred but I won't take it as it can cause me serious damage due to a pre-existing condition.
My MRI showed narrowing but they couldn’t say what it was. The PET CT is what showed the distinctive halo sign which is indicative of auto immune inflammatory arteritis conditions.
I’ll be honest, a quick google search doesn’t mention halo on a PET/CT but I’m fairly confident in his diagnoses. I did think about asking for Doppler rather than PET/CT due to the radiation. I also wonder if it isn’t cheaper so maybe we could do it more frequently!
You need someone trained and it has its limitations - you might not identify LVV with it. You can only look at superficial arteries with U/S, temporal, subclavian and brachial are the usual ones. GCA forms skip lesions - if they don't happen to be at the point you are looking at, you won't see it.
No way you could see inflammatory effects in the aorta for example without the U/S used in echocardiograms and not sure even then. PET/CT will cover a load of things at once - including underlying cancers I think.
Interesting. I was pleased with the fact that the PET/CT was a fully body from carotid down to my thighs. It was a relief to know I only had the one thing to deal with.
Very similar to you with occluded left subclavian artery and stenosis in right subclavian artery.
I felt very unwell before diagnosis, loss of appetite, hot sweats and then feeling very cold. The fatigue was terrible
I was admitted to hospital and a PET CT scan found LVV.
I was started on 40mg Prednisolone straight away and in October I started Methotrexate . My rheumatologist would have preferred Tocilizumab but at MDT it was decided to go for the cheaper option as apparently another patient very similar to myself responded well.
I am now on 20mg Prednisolone and 25mg Methotrexate.
My symptoms weren’t terrible other than intermittent claudication in my left arm and unequal blood pressure. I started having symptoms in November so there were a few gaps at Christmas when diagnoses slowed a bit.
It’s interesting that most people see rheumatologists for these diseases. I am seeing someone from the renal and vascular team at Addenbrookes. Maybe they just divide the teams up differently.
Spoke to my consultant yesterday and he said we would start Cyclophosphamide (which I’m not excited about but it’s only for 6 sessions 2 weeks apart) as soon as the Infusion ward could book me in then probably Tocilizumab once we see how that goes. So many things…
I think you are lucky - that is a specialist vasculitis team. Many rheumies will claim they are vasculitis specialist but it is a minor part of rheumatology and they are far better informed about inflammatory arthritis!
Hi although I don’t experience pain associated with LVV my Rheumatology consultant is also pushing me to move on to Methotrexate so your experience and those who have responded to your post are also helpful to me. My PET scan displayed similar inflammation to yours. My CRP had been at 141 but after 3 weeks on 60mg of Pred fell to 10 and was maintained between 2 and 3 in fortnightly blood tests thereafter until I had cellulitis in December (then on 20mg) when it rose to 7 and then 12 after further infection and reduction to 15mg Pred. I’ve had difficulty in finding anything to convince me that MTX is right for me but I do understand consultants are keen to propose alternatives rather than continuing to taper Pred on its own. It’s so hard to decide what to do for the best as from reading other posts this disease presents itself so differently from patient to patient. I do wish you well and hope the best solutions are found for you.
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How would you know if LVV is flaring during a taper if it's asymptomatic? 
Newly diagnosed
Does LVV ever go away?
