LVV Update

[LemonZest11]

Hello, just getting back with the latest on what appears to be a huge LVV flare. Had the PET Scan on Thursday and doc called yesterday. I have the scan but can’t really read it other than to see that there is no “hyper metabolic intra cranial lesion” or “FDG avid cervical or supraclavicular lymphadenopathy”, which I think means my head is clear, but the large and medium vessels, involving the aorta, subclavian arteries, common iliac, femoral, popliteal and anterior tibial arteries have FDG avid. 🤷‍♀️ Anyway, ESR is 72 and CRP is 119. Doc wants me on 25mgs pred for 2 weeks, negotiated down from 30, and TCZ immediately. Then she hopes to begin a taper. She sounds a bit worried but I know she’s consulted colleagues on this. She thinks the stretch to 4 weekly TCZ might be the culprit, since she said it wouldn’t be working, but has masked bloods that have been done earlier in jab cycle. When I had bloods done before the 4 weekly jab, it all revealed itself. Funny thing is, I’m not in pain, even though the PET suggests that some bilateral mild uptake of FDG could be consistent with PMR overlap. Too much information, sorry.

[Sophiestree]

what a bitter blow for you after being off pred for so long, but clearly your body has other ideas. No symptoms is strange too, I'm guessing you had the PET CT due to your blood results then as perhaps they were looking for something else.

[LemonZest11 in reply to Sophiestree]

It’s the way it goes, sadly. But, yes, she’s looking to see if there might be some other reason, which I’m glad she’s doing. I’ve had every blood test under the sun but things seem to be OK. I’ll have a big discussion with her on Monday as a teleconsult, our discussion so far was brief and in her free time. She’ll study the results over the weekend and give me the drill on Monday.

[PMRpro Ambassador]

Oh hard luck - but it is a risk even with TCZ and I'm beginning to think this is the "other bit" of GCA, the bit that half of patients on TCZ experience that needs pred. It has something different going on.

The workshop in London a few weeks ago was touching on this in the spectrum of PMRLVVGCA - and I think I remember them suggesting rituximab may be worth looking at. It is used in other vasculitides.

[LemonZest11 in reply to PMRpro]

Oh thank you for that PMRpro. My doc doesn’t think the tcz is enough, but she’s not ruling it out yet. She wants to get the inflammation under control first, and then see what happens, although it will be tricky to get an accurate inflammatory reading, so I’ll need to let tcz go a week to see if it goes up again. A bit of a balance. Wish it could be more straightforward, but then, well, what can you do. I will tell her about rituximab, never heard of it. Wonder if it’s available here for my situation. In the meantime, Roche keeps coming to the party.

[DorsetLady PMRGCAuk volunteer in reply to LemonZest11]

It’s certainly available but whether it’s authorised for GCA/LVV is another matter…. But always worth asking.

Sorry to hear things have flared up again…

[LemonZest11 in reply to DorsetLady]

Thanks DL. You know that I was never confident of remission, but it’s disappointing. Good thing is, I know what I’m dealing with this time, and I have all of you to bounce off. Feeling quite fortunate in that.

[SheffieldJane]

Sorry this is happening LemonZest. Best wishes for your new plan.🌼

[LemonZest11]

Thank you Jane. I’ve had a pretty good run with 69 weeks off pred so for that, I’m thankful. Onwards … at least I’m aware and in control, unlike the first run. Grateful for friends on here. 🩷

[PMR2011 in reply to LemonZest11]

Sorry to hear it’s reared its ugly head again. I am curious, you said no pain this time. What were your symptoms? I never did have pain, so had to pay attention to any flu-like symptoms, which is what I had when I flared after stopping TCZ (was off Pred) for 2 months. The good news, I only required a short burst of higher dose Pred (20 mg for 3 weeks, then taper) and back to weekly TCZ.

Hope you can manage the flare readily!

[Kafkaontheshore]

Sorry to hear what you are going through. It’s a tough one. I had a similar experience. I was having Sarilumab injections as had completed the one year of Tocilizumab allowed in UK at the moment. I was reducing Pred and flared. PET CT showed inflammation in all parts of my aorta. Was given Rituximab in January and I’ve been like a new man. It’s a long process for some of us I’m afraid. Just keep on keeping on 🤪 good luck to you. It sounds like you have a good doctor.

[LemonZest11 in reply to Kafkaontheshore]

Thank you. PMRpro has mentioned that drug, I'm going to refer it to my doc. I'm so pleased that you're feeling well, that's brilliant! Do you have weekly injections? Thanks for your encouragement, friends on here really get it, feeling fortunate. Stay well Kafkaontheshore, love that name!

[Kafkaontheshore in reply to LemonZest11]

Hi. The Rituximab I had as two infusions in hospital. I’m still on Sarilumab injections every two weeks and down to 7mg Pred. I think you can have top ups of rituximab when indicated. Take care now 😀

[LemonZest11]

Thanks for that, you too. ☺️

[Rugger]

I'm so sorry to hear this LZ, but thank goodness it's been identified and you can knock it on the head with an increase in medication. How disappointing, after being hopeful of remission.

My PET-CT scan 5 years ago was very similar to yours - aorta and its branches, with patches of PMR activity too. We're on this journey together!

Let us know what the plan is. This Forum is a marvellous place for sharing experiences.

PMR : 2016

GCA-LVV : 2019

(currently on 4mg pred)

[LemonZest11]

Hi Rugger, so lovely to hear from you. I've never been confident of remission, that's why I wouldn't give up the TCZ. Stretching to 4 weekly looks like it might have been a bridge too far. Just started on 25 mgs pred and a TCZ shot, and I think the taper begins in 2 weeks. Having a more detailed chat with my Rheumy tomorrow, who, by the way, has gone beyond. I'll be OK, over the shock now and moving forward. Good thing is, no pain! By the way, my PET-CT back in 2020 revealed the LVV, just as yours did. Thanks for reaching out, means so much.PMR: 2018

GCA-LVV: 2020

[springeramber]

Hi LemonZest

I have not been commenting for a while because people have said the same as I would but I found out last week that I am on the same position as you - not been off steroids but left permanently on 5mg - esr and crp have shot up due to (we assume ) a LVV flare - LVV diagnosed eventually by caravan - rheumatoid is on the case and I think he mentioned rituximab - I was on tcx until 6 months ago - I will be interested in your progress CTscan not caravan !!!😂

All the best 🥰