Tocilizumab & Neutrophils

[Inanotherlife]

hello everyone,

Can anybody share any experience in terms of what helped to increase low neutrophil count?

Unfortunately, my levels have fallen to 1 now so yesterday I was told not to inject anymore Tocilizumab and increase the Prednisolone until treatment can be changed again in 4-6 weeks.

I’m due to go abroad next week and I’m worried about the infection risk on the flight and whilst eating out.

I asked the nurse if there was anything I diet wise I could do to help and she said eating more well cooked meat, which I’d read also. I already have a decent balanced diet but would appreciate anything anybody can offer in terms of advice around it 😊

[Amnesiac3637]

The only thing that increased my neutrophils was coming off whichever drug was causing it. The last one that dropped them very low was Tocilizumab so had to stop it. Filgotinib has also dropped the levels but the dose has been halved so not such a problem though still teetering on the edge.

I don’t think there’s much you can do apart from eat as healthily as possible and keep as fit as possible as you would anyway as it’s RA and the action of the drugs which are causing your neutropenia.

I guess on the flight and airport you’ll be best to wear a mask and use plentiful hand cleansers and when eating out don’t eat any unpasteurised cheeses, pate etc., and drink bottled water but no ice cubes. Wash hands in hot soapy water where possible and try to keep away from crowds. I’m sure you know all that but it’s the only thing I can suggest. Hope you have a great holiday and come back rested and un-infected!

[aliplayspiano]

I understand. I’ve been on tocilizumab for 6 years and it frequently lowers my neutrophils. I only take it fortnightly and they have currently been hovering about 1. The consultant says it’s ok to take it as long as they don’t go below 1. I watch what I eat ie no unpasteurised cheeses, pate etc and wash all fruit and veg thoroughly and would wear a mask on a flight. To be honest even with low neutrophils I haven’t picked up any more infections than my husband who isn’t immune suppressed!

[fred42]

Sorry to say the only thing that improved my neutrophils was stopping Tocy , been on Cymzia for over 2 years now, works like a dream and no problems with neutrophils.Good Luck

[Intheend]

Like yourself I am struggling with Tocilizumab induced neutropenia.

It is my fifth biologic and the only one so far to work ,so am anxious not to have it withdrawn.

At the moment my neutrophil count is 1.2 and my Consultant has said I can stay on it unless it drops to below 1🤦🏻‍♀️

I dread getting the results of every blood test in case it has dropped further.

In terms of infection I do tend to be cautious about being in crowds and am careful about food hygiene, but so far haven’t had too many infections while on it.

Really hope you have a lovely holiday and when you get back can sort out another treatment to suit you.

[LillyBeagle]

I've been on Tocilizamub for almost 9 years and in the beginning my Neutrophils would come in a bit on the low side when I had my blood tests done. It took a while to sort out what was causing the problem but it turned out to be the Sulfasalazine a DMARD tablet. So if you are taking something like this maybe it be the cause. Wishing you well.