Rising CRP/ESR

[LemonZest11]

Here we go … got the results of my blood tests this morning 😞 and both CRP and ESR have crept to 20. I’ve been off Actemra for almost 8 weeks and down to 5mgs of pred for 4 weeks, until two weeks ago. Rheumy asked me to stay on 5mgs until I see her in January but no, of course I know better, so I dropped to 4.5 and then 4 mgs pred. What to do?? I had been OK on 5mgs (I think), and so should I go up to 10mgs and then back to say 6mgs? Or 5mgs? How long to remain at 10? I know I should know all of this but in the panic, I can’t find the flare protocol. Thanks 🙏

[DorsetLady PMRGCAuk volunteer]

Here is protocol - and don’t panic. What do you mean by ‘you think you felt okay at 5mg’? ..and if not sure why did you reduce?

In last post you said Rheumy wanted you to stay at 5mg for 6 months - but you didn’t want to… perhaps you should have.. but hindsight is a wonderful thing.😊

I’d up to 10mg for 7-10days [14days max] -back to 5.5mg or 6mg.. maybe then try 5mg… and suggest you then do as Rheumy suggested.. or at least for a couple of months.

Hope things settle..

healthunlocked.com/pmrgcauk...

[LemonZest11 in reply to DorsetLady]

Thanks DL. To be clear, when I say I think I was OK, I feel no pain at all with this LVV and so I never know what is happening without blood tests. The Actemra blocked the inflammatory blood results so I have been off it for a while and still feeling well. So I say “I think”, because a blood test after 5 weeks off Actemra and 5 weeks on 5mgs pred was OK. It’s this recent one, after dropping to 4.5 and then 4mgs that showed the creeping inflammation, but no pain.

I’ve heard back from Rheumy just now and she’s said 10mgs for a week then 7.5 for another week then back to 5mgs … very similar to your advice.

Other thing she has asked me to think about is joining her clinic at Royal Perth Hospital in order to access other “advanced medication through the hospital, such as secukinumab or a JAK-inhibitor such as Upadacitinib”.

[DorsetLady PMRGCAuk volunteer in reply to LemonZest11]

Okay -and I’d be taking up her offer to join clinic…

Good luck..

[LemonZest11 in reply to DorsetLady]

Thanks DL. I have been worrying all day about what to do, but I knew, once your side of the world awakened, I’d get some help. I appreciate it.

[Rugger]

Sending you much sympathy and empathy. I know what you mean about never knowing what's happening with the LVV.

Like you, my Rheumatologist said I could stay on 5mg for as long as I wanted, but I'm testing the water with the pred and currently down to 3mg. Fortunately, my latest CRP was 1.5 so I'll be braving the taper to 2.5mg on 1st January - who knows what will happen then?

What a game this is, but we are both in good hands. We'll win in the end! 🌻

[LemonZest11 in reply to Rugger]

Thank you Rugger. I’ve been in the dark for ages because of Actemra masking inflammation, but I’m grateful for the journey and feeling optimistic again. Yes, LVV gives us no painful warnings, unlike PMR, something I guess is to be thankful for but also, learning to be so cautious and continue with regular blood tests.

Yes, so thankful for a vigilant, available Rheumatologist, and you know what? It’s not the worst battle to have. Take care xx

[PMRpro Ambassador]

Naughty girl!!!!! You do realise you will have to 'fess up don't you because otherwise she might want you to go higher!! You did I assume now I've read your reply to DL? Though it has achieved one thing - 5mg is at least as low as you can go.

Sorry I'm late - no idea how this slipped through the net until now. The trouble with LVV really does seem to be that it doesn't cause much in the way of symptoms - large blood vessels do have a bit of leeway when they are inflamed. It is the medium and small ones that narrow enough to restrict the blood flow and potentially cause ischaemic pain. And it is very difficult to monitor.

As for the clinic at Perth - I'd be there like a shot.

[LemonZest11 in reply to PMRpro]

Thanks PP, yes, I fessed up. I blamed it on the cheeky haematologist who encouraged me to experiment 😏. Yes too, to the fact that I can't go below 5mgs, I'm just hoping that 5 will be enough.Have you heard of either of the drugs my Rheumatologist mentioned? PAK-inhibitor Upadacitinib or secukinumab? Bit of a mouthful there!

[PMRpro Ambassador in reply to LemonZest11]

I've heard of secukinumab but not in connection to LVV. Not heard of the other though I have heard of the janus kinase inhibitors which seem to be a bit of the new kid on the block - they are trying them out in other areas, there seems to be a lot of interest in repurposing drugs. They are both more usually used in RA and psoriatic arthritis and ankylosing spondylitis. So I think it is a case of watch this space - I will be so keep us updated!

What is interesting is that there is this push on the one hand to have PMR/LVV/GCA recognised as a spectrum of disease but they are looking outside the box with LVV treatments.

[LemonZest11 in reply to PMRpro]

Yes, I've been reading about them and it sounds like very early trials. Guess I have nothing to lose, but I won't see Julia until the new year. My son is keen for me to join her clinic, his response was "ah yes, the 'mabs and the 'nibs". Until then I'll have to pull my head in and obey the rules. I'll keep you posted.

[PMRpro Ambassador in reply to LemonZest11]

Is your son a medic?

[LemonZest11]

Head of Physio at Sir Charles Gardiner Hospital, on the organ transplant team.

[PMRpro Ambassador in reply to LemonZest11]

"Tugs forelock"

[herdysheep in reply to PMRpro]

😂

[LemonZest11]

He's not like that! Playing the tuba in a Christmas Concert tonight, part of the community and a bit of a sweetheart. But I'm biased. Aren't we all?

[PMRpro Ambassador in reply to LemonZest11]

Anyone who plays the tuba must be OK - and not take themselves totally seriously!!!!

[herdysheep in reply to PMRpro]

🤣🤣