Recent LVV Diagnosis

[811Yoga]

I was diagnosed with PMR April 2023 and put on 15 mg Pred reducing. Markers remained high this year and I finally got to see a Rheumatologist at Poole Hospital 2 weeks ago who diagnosed LVV. I am back to 10mg Pred and 10mg Leflunomide and can't see the end of the tunnel! Awaiting electrocardiogram and Ct scan. Can others provide helpful information regarding their experiences.

[DorsetLady PMRGCAuk volunteer]

We have discussed, and pleased to see you have posted. hopefully you will get lots of support from others in same situation. 🌸

Maybe when you feel up to it add this additional information to your bio please,

[123-go]

Hi there! I was diagnosed with PMR in 2018 and asymptomatic LVV (4cm ascending aorta aneurysm) in 2020. I was prescribed 10mg daily Leflunomide and continued with my then dose of 5mg Prednisolone. I was given time to decide whether or not to take the Lef and finally agreed 2 months later. I took my last 0.5mg Pred in January this year and have remained on 10mg Lef. I’ve had no discernible side effects with the Leflunomide.

There is light at the end of the tunnel so try to remain positive. Once all the investigations are over there will be less stress caused by repeated hospital visits and hopefully you’ll settle into a more relaxed pattern. Do read the patient information leaflet that comes with your Leflunomide (if you haven’t already done so). Good luck and let us know how things go. 💐

[811Yoga in reply to 123-go]

Thank you for your helpful comments. It is as you say stressful with hospital appointments let alone the number of doctors/specialist appointments I have already had. I will let you know how it goes.

[123-go in reply to 811Yoga]

All the tests and investigations are for our benefit but wearing! I always think how fortunate we are to have so much available to us to aid diagnoses and treatment. I hope it won’t be long until you reach the stage where the only appointments are the regular, routine reviews when you can concentrate more on living your life and looking forward to small (or big!) treats🤗. Keep in touch.

[piglette]

I have always had high markers around 30 for CRP sometimes going over 100. I feel fine when it happens and have had all sorts of tests. They have now given up and decided it is just me. The important thing is how do you feel? My electrocardiogram was fine and so was my CT scan, although I was pretty rough after it as I reacted to the contrast.

[QiRelief505 in reply to piglette]

This is another reason I love this group. It’s reassuring to hear when someone else receives the same opinion from their doctor as you to dispel any lingering doubt you may have. My last CRP while on 1 mg of Pred was 8, after 4 months off Pred it was 13. I feel relatively well, but need 400 mg of ibuprofen a day to easy soreness/stiffness with very little pain. I expressed worry of chronic inflammation to my GP and she said - as your doc did - that may just be my number and it’s important to recognize how I feel. We need to monitor CRP and check lab work for kidney and stomach function, however it may not be an issue at this dose (two 200mg tablets 2x a day.) Thank you, piglette.

[PMRpro Ambassador in reply to QiRelief505]

Well it ISN'T your number is it? You got to 8 - and it is trending up. The local Pain Clinic doctor here was not prepared to accept 200mg ibuprofen long term for me!!! It worked well for a non-PMR problem for me. Solved now as a different doctor was happy to give steroid injections - but most here would prefer a couple of mg more pred to long term NSAIDs.

[QiRelief505 in reply to PMRpro]

Different approach in the states as they seem very hesitant to keep you on pred for more than about 18 - 20 months. After my taper, the rheumatologist office (NP and PA) suggested the biologic Kevzara which I was not willing to take as I was, and am, doing well managing pain with a low dose of ibuprofen. In fact feeling better than when I was taking 3 mg of pred. New lab work is scheduled in 10 days and a follow up on 12/17 to check levels and reassess. I will bring up restarting pred and will let let you know what they advise. Thank you.

[PMRpro Ambassador in reply to QiRelief505]

If ibuprofen manages the pain it does suggest it may not be PMR. But do be careful with longterm ibuprofen.

[Oxfordboy2]

Hi Yoga,I like you are a member of this seemingly small club.I started with PMR/GCC in 2020 which has cleared up now but developed into LVV in early 2022.Once I had got over the early side effects which took a while I can honestly say it’s difficult to believe I have anything wrong with me.My pet scan in January show an improvement on the previous years with no sign of Pmr.This has been achieved by taking MTX and folic acid,no steroids at all.I do have sore gums and roof of mouth regularly and dry eyes but both are manageable.In December I have a consultation after which I can update my condition.My rheumatologist did from the outset suggest treatment would be a minimum 4 years.Good luck to you.

[Allotmental]

Similar to Oxfordboy2 , I developed PMR in 2018. I was recovering from this when I became unwell in 2020 which turned out, after a PET scan in 2021, to be LVV. Treated with prednisolone and Methotrexate injections from the outset. I seem to tolerate both ok. My latest PET scan has shown no active Vasculitis.

The initial period after diagnosis was ‘investigatory intense’, but then calms down once they have established extent of any impact of the LVV and also gives a baseline for subsequent review - including the impact of treatments.

I still have bloods done every 8 weeks, which I monitor by getting the results copied to my GP so I can see them on my online GP record. Apart from impact of meds ( weight gain, pre-diabetes), fatigue and some arm claudication, things are generally ok and I have adapted to a new way of being which is physically much much slower and less social than before!

I do still actively avoid infections though, as the slightest cold really knocks me back, and I work from home and still wear a mask if in crowded indoor places (which I generally avoid).

Good luck. VasculitisUK has great information and support should you want it.

[Nanadeedee]

Hi yoga,

I was diagnosed with PMR in August 2020, I was down to 1mg Prednisolone in June when I began to feel unwell.

Night sweats, hot and cold, loss of appetite and fatigue, I could have slept 18 hours a day.

I saw the rheumatologist in July and a pet CT scan was done.

I was admitted to hospital, a vascular ward due to pain in my left arm which turned out to be an occluded subclavian artery and whilst there they diagnosed LVV from the results of the PetCT scan. It affects my subclavian arteries, carotid arteries and aorta.

So I was immediately started on 40mg Prednisolone which at first devastated me after 4 years of tapering but of course I immediately felt better and have accepted that it what gives me a life.

I started methotrexate 3 weeks ago and so far so good.

I have good days and bad days but I am being monitored by the vascular team and rheumatologist and doing everything I can to get healthy.

I wish you good luck and hope you have been diagnosed before too much damage has been done.

[Noni71]

I was diagnosed with GCA in August 2022. I immediately felt better after starting and began tapering. My CRP and ESR began to go up about 6 months later. A PET CT scan revealed LVV so my dosage was altered back up to 30mg. I had no symptoms. I have had Tocilizumab for a year but am now on Leflunomide as I couldn’t tolerate Methotrexate. I have my ups and downs but generally feel that I can cope with life’s ups and downs. The only thing I miss is a glass of wine as alcohol intake is very limited with Leflunomide. Hope things work out for you.

[Rugger]

Welcome to the forum - there are several of us with LVV. I look on it as just another form of GCA (which it is!) in as much as it's not cranial GCA, but affecting arteries from the neck down! I have it in my carotids, aorta and its branches to my arms and legs.

There seem to be a few of us who started with a PMR diagnosis and then received a diagnosis of GCA-LVV.

I was diagnosed with PMR in 2016 and had several 'relapses' / flares when my blood tests showed an increase in inflammation. (With hindsight, my Rheumatologist wonders if I've had LVV from the outset.) In 2019 my legs felt that they had 'run out of steam' - something called "claudication". A PET-CT scan showed up the inflammation in my arteries, which explained the symptoms and confirmed the LVV diagnosis.

My Rheumatologist increased the pred to 10mg, but also started the process for me to have Tocilizumab. I had that during the early stage of the pandemic and benefitted from an extension of the NHS one-year ration to 2 years. It suited me well and I was able to reach zero pred just as the TCZ was discontinued in summer 2022! However, my Rheumatologist was not happy for me to go without any medication at all.

I tried MTX but it didn't seem to do anything for me, so I went back on pred and am now tapering at 3mg. I have blood tests every 3 months and the latest this week is "normal" - CRP only 1.5, yippee! (Highest ever was 87!)

I live in hope of going into remission one day, but as 123-go says, I am so grateful for the care I receive in the meantime. Like Oxfordboy2, I can't tell that there's anything wrong with me and I'm happy with that! I'm 9 years older than I was when symptoms of PMR first appeared, so I've no idea what I would be like without these conditions. The tunnel may be of unknown length, but there is surely light at its end! The task is to continue to taper, monitor and enjoy life!! I've just come back from a 3-day rugging 'retreat' - rug-making from breakfast until bedtime with 22 other ruggers! 😱 (My logo is a circular braided rug.)

I started the Yorkshire support group with another PMRer and continue to play an active role in its running. I hope you are able to receive support locally. Let us know how you get on. 💐