Tocilizumab

[strongmouse]

My husband has left several messages for Rheumatology that he needs to speak to someone as he is in constant pain and having flares and difficulty managing day-to-day.

Finally someone called today. An adminstrator. She was very defensive, he'd left a message this morning. She said that they hadn't phoned back as they had looked at his blood results and his CRP was so low they gave no measurement. He was taken aback by her attitude, but eventually things calmed down and he had a proper conversation. He pointed out that some of his blood tests were related to his chronic leaukaemia, and that his CRP has only been low since he started taking tocilzumab. He is very meticulous and keeps a data sheet of his blood results highlighting the relevant ones.

She was taken by surpirse to learn he had leaukaemia. Well being an admin person she had no access to his medical notes! She was simply the messenger - plus a little knowledge. My husband explained what has been happening and why he needed to at least speak to someone. He pointed out that he is in hospital every four weeks for his tocilizumab infusion someone could see him then. The admin lady went away to talk to someone and he was told that the Registrar will see him when he is in hospital in three weeks time. Hopefully that happens. I can see him chaining himself to the chair if they don't! (Which last time was done in the Discharge Lounge not the Day Ward).

I know the hospitals are overstretched, but his care during Covid lockdowns was much better than it is currently.

There is a link to a case study showing that tocilizumab interferes with the blood CRP readings. We knew this as he had a serious leg infection two months ago and had antiobiotics and his CRP was still too low to show a reading. For anyone interested here is the link - ncbi.nlm.nih.gov/pmc/articl...

[Maisie1958]

First, I wish your husband rapid improvement and secondly thank you for sharing the link. I flit between the PMR/GCA forum and here. Although not on tocilizumab myself, it is used in GCA and seems that several members have had difficulties with flares and infections not being picked up quickly as CRP remained low.

All good wishes to you both.

[helixhelix]

very useful link thanks. I’m on Tocil with normal CRP and increasingly puffy hands! Have rheumy appt next week so will see what she aaya.

[Lolabridge]

Thank you for the link strongmouse. I've just started on Tocilizumab so will note this for future reference.

I hope your husband gets some help with those flares and pain soon without having to chain himself to the chair!

[Sheila_G]

Hopefully he get's sorted at his appointment.

[Gnarli]

Here's hoping that someone will,finally, talk to you and sort it out. This situation is happening far too often. Good luck

[strongmouse in reply to Gnarli]

On Tuesday he had to wait to see the doctor before he could have the infusion, So he waited for a couple of hours and then had the infusion and it made so much difference being able to see someone face 2 face, The outcome is he had corticostreroid injection as well as the Tocilizumab. Now we hope that it helps. Within a day he had two follow up appointments. feels like success, but we are waiting to see how well they work!

[Gnarli in reply to strongmouse]

I wish you both all the success in the world. Let's hope the attention he (finally) received will help.

[davannh]

This is the problem with Tocilizumab. It removes all the inflammatory markers completely. I was admitted to A&E a few years ago with excruciating stomach pains. I explained that I took Tocilizumab and that a blood test would be unreliable with regard to inflammatory markers. I was ignored. They ruled out problems with my gall bladder completely. Only when I had an ultrasound and the operator immediately said “you have an inflamed gallbladder” was I diagnosed. The doctor in A&E said “but your blood tests were normal”. After that experience I asked my rheumatologist for a letter explaining that I could have serious infection but my blood tests would not indicate that anything was wrong. I carried that with me everywhere whilst I was on Tocilizumab. Sadly after 12 years the drug stopped working.

[strongmouse]

Thanks I appreciated you sharing your story. Sorry you had such a problem with it. Forewarned is forearmed.