Actrema (tocilizumab) and bladder infection

[Charkha]

Hi everyone, I had my first infusion of Actrema this week. The infusion went fine but several hours later I started to get symptoms of a urinary tract infection and ended up with a bad UTI. The doctor put me on an antiobiotic while we wait for the culture results and that has helped. I very rarely get UTI’s but wonder if I had one and didn’t realize it when I went for the infusion (I would not have had it if I had known) or whether the Actrema had anything to do with it. Anyone else had this problem.?

[SheffieldJane]

I have frequent UTIs, something I haven’t experienced since I was young. When it’s bad I do take antibiotics, this is an interruption of my Actemra treatment though as I pause my injections while I am on antibiotics. It feels like every couple of weeks these days. Sometimes I have cystitis symptoms yet my urine shows no sign of blood or bacteria. My GP prefers to offer other explanations rather than side effects - age etc.

[Charkha in reply to SheffieldJane]

Thanks for sharing your experience. I was interested to see that until recently you didn’t get UTIs as I have also not had this problem for years. I suppose it could be other things, age etc., causing it as your doctor suggests but it is kind of strange that it started right now. Your GP’s response about age reminds me of a true story a friend of mine shared. She worked as a nurse in a doctor’s office and a patient came in complaining of pain in his right leg. He was 92. They did xrays and the doctor told him that the tests didn’t show anything “But” the doctor said, after all, you ARE 92 years old” to which the patient replied, “my left leg is also 92 and that one doesn’t hurt!!!!”

[SheffieldJane in reply to Charkha]

Good story! 🙂

[Charkha]

Thanks. What the doctor said makes sense and encouraging to know that Actrema seems to have been helpful.

[Sophiestree]

It's strange it happened so soon after your first dose.I am also on TCZ and have had one urine infection since starting in Jan 2021, but also purchased Mannose-D as per recommendations here and that seems to have prevented any further issues. I only took it while I felt I had symptoms though, not all the time.

I just make sure I'm well hydrated.

I know SheffieldJane has had a rotten time of it though. Feel for her a lot.

[Charkha in reply to Sophiestree]

Thanks for the recommendation on Mannose-D. I will definitely start that and also make sure I drink enough. Encouraging that you have not had any further problems.

[PMR2011]

It usually takes bacteria 24-48 hrs to “grow” enough to cause an infection. Could it be you had a mild UTI already that was able to take hold after Actemra?

[Charkha in reply to PMR2011]

Yes, I think this makes the most sense as the symptoms started so quickly after the infusion. I will make sure to check that I don’t still have an infection before I do the next infusion

[Sharitone]

I haven't had any UTIs in 4 months of TCZ, but it was one of the things they warned about before starting. I hope you don't get any more!

[Charkha in reply to Sharitone]

Me too!! I think I must have had an infection without realizing it so will be sure I check before the next infusion. Other than that the infusion went fine. Just made me very tired. I will just be very happy if it allows me to get down on the 40 mg of prednisone more quickly.