1st full blown flare on Tocilizumab….😞

[Brushwork]

Yesterday at about 10am I started to get mild pain in my left foot, cuboid/metatarsal joint. It became more and more painful as the day progressed, till I was limping badly. I have been getting very minor flares for months, the roaming pain kind of thing where it hits a joint, hurts for a wee while and goes away… That concerned me as that is how my RA started.

I had Covid early February, but these minor flares had started before then, in fact I had mentioned them to the Rheumy nurse. Post Covid I had a couple of bad Sjogrens flares but the joints didn’t really get any more involved, until now. I don’t think this is Covid related.

I have had a good run on Tocilizumab, it has worked very well for me. I fear it may be approaching the end of this particular road.

It’s rubbish that this happens…

Go gently

[Claire32]

hi, sorry to hear you’ve been having some flares. I’m waiting to start this drug.

My current drug stopped working a while ago but I’ve carried on hoping things would improve. I’ve been on Enbrel and also Baricitnib which worked amazing at first but stopped working after a while.

Do you take methotrexate as well?

Just wanted to say I understand. It is disappointing when a drug doesn’t seem to work as well. How long was you on it? Hope you can discuss things with your rheumy team. Don’t suffer. I had a steroid injection recently and that improved things massively for a while but that’s definitely wore off now

Take care xxx

[Brushwork in reply to Claire32]

Hi Claire32,

Thank you.

It’s all too familiar isn’t it. I started Tocilizumab 3 years ago, it has worked wonderfully, till now and I’m not ready to give up just yet as there’s a theory the flares might be post Covid.

I had been on Amgevita and Benipali before this, neither successfully, the first worked only for a couple of months the second caused a nasty rash around my neck.

I have been on mono therapy because I don’t seem able to tolerate much, however we are trying adding Hydroxychloroquine to see if that gives things a boost. We shall see…. But, I won’t suffer too many flares however minor, before getting in touch with the Rheumy team and seeking another wonder drug.

I am just very grateful there are now so many alternatives.

Go gently