Long term tocilizumab use

[christine2715]

Hello all - I wonder if anyone has experience of long term tocilizumab use. I have been having injections every 4 weeks. I began weekly and gradually moved to 4 weekly. I have been on TZ for 3 1/2 years now. I am now getting fairly regular relapses - especially after overdoing it. Have felt really awful now for 3 weeks, my head feels like lead, nose really blocked, general aching all over and really tired and exhausted. Feeling totally lacking in energy. I cant help wondering if I should be going back to 3 weekly TZ. Have upped my Pred from 3 to 4 mg for the last couple of days and added in Naproxen. Last relapse I had a steroid injection which worked really well for several months. I am not sure exactly what I had. Would appreciate any help from all you lovely people, particularly long term TZ users.

[SheffieldJane]

Have you had your Adrenals checked? Just in case this is the culprit. Certainly, lack of Cortisol could explain extreme fatigue . A Synacthen test would let your doctors know if your Adrenal glands are capable of working. Pred is far from providing all your requirements at 4 mgs.I have been on Tocilizumab for nearly a year. I have a blocked nose and a thick head at night particularly. I kind of associated it with Tocilizumab maybe as side effects.

Do you find that an increased dose of Tocilizumab makes you feel better? I have PMR, GCA and LVV. I think I feel better on a fortnightly dose than I did on a weekly dose. Hard to tell though. I am still on 9 mgs of Pred and have collected most of the adverse effects of long term steroid use (5 years).

[Rugger]

I've been on TCZ for only 16 months, usually weekly but with 3 months at fortnightly doses. I believe the half-life of TCZ is around 2 weeks, so taking it every 4 weeks probably means that you are without the drug for half the month.

I think you should discuss this with whoever prescribes the drug for you.

PMRpro quotes the clinical trials where some people took TCZ every week and others every 2 weeks, but not monthly.

Take care and hope you get something sorted out soon.

[PMRpro Ambassador]

If you want to know about long term tocilizumab you may do better on a RA site like NRAS on here.

I agree with SJ that your adrenal function - or lack of it - needs to be checked.

And you may be one of the half of patients who isn't able to get off pred altogether - and might do a lot better with jabs a bit more often as well as a bit more pred.

[broomfield28]

I’ve been on Tocilizumab for 3 years every week. I have GCA and PMR. On 6 mg Prednisolone starting to reduce to 5mg. I’ve been told I will be on 5 forever and when I asked about the injections they said” for a long time “. Feeling okish but limited in what I can do. Think this is it! At least there is no pain so thank you for the medication.