Hi all - I'm seeking some reassurance. I moved from Humira (I had been on this for 15 years and was in remission) to the biosimilar, Imraldi, with my RA returning as a result. I was put back on Humira but, unfortunately, this stopped working too. I have been moved to tocilizumab and am in my 5th week, i.e., I have had 2 IV infusions. It doesn't appear to be working (although my ESR has dropped) as my hands and wrists are still inflammed. Should I be more patient? I'm worried as I can see that some people have been saying that it worked for them after 2-3 weeks and I am now entering my 6th week.
I would appreciate any advice or feedback : )
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rebs48
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Hi rebs. I know tocilizumab works for many but it had no effect for me apart from causing extreme muscle pain. Strangely enough my ESR dropped significantly too but I was in more pain than before I started taking it. I was on weekly injections and persevered for 16 weeks but the rheumatologist stopped it because he said it obviously didn't suit me. I'm sorry I can't reassure you because of my experience but perhaps someone else who is on it can.
Be patient . Mine kicked in and has stayed kicked in for 2 years. Think it took 2 month for me but changed my life. However the injections didn't work for me but the monthly infusions ( only 1 hour) do . Good luck
Tocilizumab was my 5th biologic, none of the others worked. However, I started injections (I do them myself weekly) in August and had a steroid injection at the same time. By the end of October (when the steroid wore off) I was no better so another steroid injection. At Christmas my sister noticed how well I was and I realised that it was working! That was 4 years ago and tocilizumab has changed my life. I thinkthat you have to give it longer. I do hope that it works for you
It worked well for me but took about 3 months to kick in, so maybe a little more patience? I had monthly infusions.
Unfortunately my white blood cell count played up if I had enough Tocy to control the RA so have moved on, I was rather sad as there were no other side effects for me.
It worked great for me at first. I went to live overseas and it took me over 6 months before I could get back on the infusions again. I have found that when I have to stop the medication for a while it doesn't seem to work as well. Not just this infusion but others too.
I will be watching this post I'm.8 weeks in my steriod injection has completely wore of all my joints are stiff and painful..when I took it on Friday again I was woken up by bad burning pain in my belly again then the pains goes until.intake it again..its looking like it's not working for me but I will give it some more time.
I am so sorry you are not having relief. I was on Tocilizumab for 4mths and like you it didn't work, infact it turned out I was allergic to it and all it did was make me very ill. I truly hope it begins to work soon, but after 6wks I think you should have a word with your Rheumy team and see what they say; fingers and toes crossed you get well soon.
I too am interested in your post. Today will be my fifteenth injection . I felt it was working slowly every week bu now not too sure. My shoulders are really sore and getting tightness in knees. All signs of my RA. No appt with rheumy nurse just taking more painkillers. Two more weeks then I shall contact nurse. So disappointed
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