Checking for flare when on tocilizumab - Vasculitis UK

Vasculitis UK

7,783 members6,757 posts

Checking for flare when on tocilizumab

Devoid profile image
8 Replies

Hi has anyone come across how they can check inflammation levels when on tocilizumab?

Written by
Devoid profile image
Devoid
To view profiles and participate in discussions please or .
Read more about...
8 Replies
PMRpro profile image
PMRpro

They can do IL-6 levels but it isn't widely available and is expensive. Most go by the symptoms.

Devoid profile image
Devoid in reply to PMRpro

Hi I’ve been generally off for a few days, the GP has emailed rheumatology urgent yesterday but no response and they have stopped the patient help line indefinitely! Had bloods yesterday in case I had to restart pred.As expected crp normal but I did think it was interesting that feritin was elevated. The doctor hadn’t commented on this but I looked into it and it can be linked to inflammation.Not sure what to think

PMRpro profile image
PMRpro in reply to Devoid

Ferritin is another acute phase reactant - like ESR and CRP.

You know that only half of patients on TCZ get off pred altogether? There can be 3 mechanisms causing inflammation in GCA - TCZ only has an effect on 1, production of IL-6. If your GCA has one or both of the other two involved, you still need pred. Biologics are extremely specific in their action - one thing, and one alone ...

Devoid profile image
Devoid in reply to PMRpro

I’m aware of that , do you think I would have gone this long before a flare ( stopped pred February) or is that like how long is the piece of string 😧

PMRpro profile image
PMRpro in reply to Devoid

I fear it may be ...

Devoid profile image
Devoid in reply to PMRpro

Thanks again for your support and knowledge

Sophiestree profile image
Sophiestree in reply to Devoid

How long from starting the TCZ did you take to get off pred?

Devoid profile image
Devoid in reply to Sophiestree

15 months

You may also like...

A flare or just 'symptoms'?

because my bloods are coming back normal. My GP isn't happy with how I'm feeling so has started me...

Vasculitis flare up symptoms

the past year. I'm curious how many if you had the disease come back and how did you know? What...

Advice on pain & difficulties when swallowing

alot when I swallow and aches the rest of the time and the roof of my mouth feels hot to me. When...

Cold feet when wearing socks

wearing socks, my feet start to feel very cold. And when I take my socks off my feet start to warm...

Back home after spending 10 days in hospital after a TAK flare up.

Methotrexate as it was damaging my liver and my liver levels went flooding through the ceiling to...