Tocilizumab (RoActemra) and low neutrophils?

[Lolabridge]

I've been injecting TOC for just over a year, but in the last three months my neutrophil level has been falling and is now below normal at 1.6 x10^9.

I understand that low neutrophils is a known side effect of TOC. My RA nurse asked if I have an infection but I'm not aware of one currently although I did have

Has anyone had this happen to them? How was it treated?

[Intheend]

I am currently in exactly the same situation

Only been on Tocilizumab since December ( and sadly not feeling any benefit yet) but my Neutrophil count was 1.3 when checked 3 weeks ago. I was asked to have it retested after two weeks and have just had the result..1.4🤦🏻‍♀️

Waiting for advice as to whether to continue injections.

[Lolabridge in reply to Intheend]

Thank you. I’m waiting to hear from my Rheumy whether I’m to continue or not.

[aliplayspiano]

Yes I have this problem. I’ve been on tocilizumab for 6 years. After the first few months of ok blood tests I kept being called back for repeat bloods because of low neutrophils. The consultant said that because it was working really well for my RA to just inject fortnightly and that as long as the neutrophils stay above 1 he is happy for me to continue. So that’s what I’ve been doing for the past 5 years . Occasionally I have to miss a dose if the neutrophils drop below 1 but mostly they are between 1.2 and 1.5 and consultant is fine with that.

I don’t know if weight has anything to do with it as if you have toc by infusion they calculate the dose based on weight but if by injection everyone seems to get the same dose!

[Lolabridge]

Yes I wonder whether switching to fortnightly dosing may enable me to continue.

Rather concerned that such low neutrophils render us so susceptible to getting any infections. I’m already being very cautious but my granddaughter often seems to have sniffles when I see her and I would hate having to limit contact. ☹️

[aliplayspiano in reply to Lolabridge]

Fortnightly has definitely helped me to stay on toc. I have asked about infection risk but no one seems able to give me an answer! I do try and keep away from people if they’re obviously unwell. But I work part time on a busy university reception desk and have 4 year old twin granddaughters so not always easy! I have had a couple of chest infections in the past 6 months but always try and see a gp quickly and normally get given antibiotics.

[fred42]

I was swopped from Tocy to Cymzia, no more low neutrophils and good RA control. Depends on your consultant I suppose, it's always tricky changing but sometimes it works.

[Lolabridge]

That’s good to know, thank you. I’m hoping I won’t have to change. Perhaps take a short break or switch to fortnightly doses as others have suggested. Just need to have a short conversation with my consultant rather than a nurse who can’t answer mt questions!

[Moomin8]

Hi,

I'm on Tocilizumab and it's going really well - apart from low Neutrophils, low white blood count and raised ALT (liver results)

I've had to stop all my meds (including injections) as I had an op. The blood test I had pre-op (about 3 weeks after stopping Tocilizumab (and other meds) my Neutrophils and wbc returned to normal and my ALT is working it's way back down. All being well next week, when I get the results of my lumpectomy, I can restart all meds - watch this space! 🥸

[Lolabridge in reply to Moomin8]

That’s good you neutrophils are recovering. Hope the op results are good news x

[Moomin8 in reply to Lolabridge]

Thanks, I'll find out 28th May 🫣

BTW, my neutrophils were 1.6. My rheumatologist didn't seem too bothered. They once went down to 1.3 and they said we'd keep an eye on it.

I researched to see if anything could help my wbc and Neutrophils, because Tocilizumab really works well for me and I didn't want to have to stop it. I found a lot of different things. This is an interesting article:

researchgate.net/publicatio...

I actually also now have over 85% good, dark chocolate. I really feel it's helped me. There's quite a bit of research about it online. ZOE has an article bout how to understand what good dark chocolate is and it's benefits:

zoe.com/learn/dark-chocolat...

I buy the Co-op fair trade 85% dark chocolate - it's very 😋- and have one square after my meal.

I might be wrong, but I do believe it's helped me. And if I'm wrong, it's still very pleasant ☺️

[Lolabridge in reply to Moomin8]

It’ll be no hardship to try out your suggestion! Thanks!🍫😋

[Moomin8 in reply to Lolabridge]

🤣