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!
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!
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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Newly diagnosed
How would you know if LVV is flaring during a taper if it's asymptomatic? 
Does LVV ever go away?
