Advice on Tocilizumab (Actemra) please

Sandey

Hi, I am new to the forum and I wondered if anyone could reassure me about Tocilizumab. I had my first infusion just over 4 weeks ago to treat my extremely aggressive rheumatoid arthritis which is out of control at the moment. I was optimistic at first, but four weeks on, I have had no easing of my symptoms at all. Is it often the case that TCZ doesn't work after the first infusion, but could still work after the 2nd or 3rd, or shall I give up hope now?

As5567

Sandey wrote:

Hi, I am new to the forum and I wondered if anyone could reassure me about Tocilizumab. I had my first infusion just over 4 weeks ago to treat my extremely aggressive rheumatoid arthritis which is out of control at the moment. I was optimistic at first, but four weeks on, I have had no easing of my symptoms at all. Is it often the case that TCZ doesn't work after the first infusion, but could still work after the 2nd or 3rd, or shall I give up hope now?

4 weeks is still early days, some people react to these drugs over night and some people take weeks/months to feel the full benefits. I remember when I first started Humira, that drug took a good 6 months for me to fully feel the benefits.

Your doctor will probably know if its working before you do by comparing your blood tests, if he/she thinks its not working then they will take you off the drug after around 6 months usually.

dreamdaisy

I've not had this one but don't give up hope; I've learned over the years that it's better not to expect too much because that way one can be pleasantly surprised. I take a triple therapy for my PsA, I know it's working because my bloods are wonderful but it's too little too late for me for much physical benefit to be felt because I have OA too. Hey-ho.

RA is a fierce disease and it needs fierce meds to fight it. It can take time for the body to adjust to the drugs and, in the early stages, it is very much a matter of trial and error. What else have you tried in the past? I've done methotrexate, leflunomide, cyclosporine, sulphasalazine, various anti-inflammatories, infliximab and Enbrel. I wish you well and I hope you soon start to feel some benefit. DD

barbara12

Hello Sandey
Sorry I cant offer any help. I have OA..but I just want to welcome you to the forum, its good to talk to people that understand some of what you are going through...I do wish you well with the meds and please let us know how you get on .

Sandey

Thank you all for your reassurances. I'll try to be patient, but when I was on Enbrel it worked immediately and I think I was expecting a similar result.

@dreamdaisy
Since I was first diagnosed with RA just after having my first child over 20 years ago, I have tried gold injections, methotrexate, sulphasalazine, cyclosporine, prednisolone and, most successfully, Enbrel. I now regret agreeing to come off Enbrel to participate in a trial because I didn't realise I wouldn't be allowed to go back on it (NICE Guidelines??) and since then my condition has deteriorated rapidly.

stickywicket

Sandey wrote:

I now regret agreeing to come off Enbrel to participate in a trial because I didn't realise I wouldn't be allowed to go back on it (NICE Guidelines??) and since then my condition has deteriorated rapidly.

Sandey, that sounds all wrong. Surely you shouldn't be penalised for helping with a trial I doubt the guidelines were meant to be used in this way and, in your shoes, I'd want a frank and fu ll explanation from my rheumatologist as to why I couldn't go back on enbrel.

The only valid reason that comes to mind is if the enbrel wasn't working as well as you thought in the first place. Or was damaging your liver etc. The connection between disease activity and pain is a very tenuous one. I've been in tons of pain only to be told that that 'according to your blood tests you're OK'. Equally, I've had times when I felt the meds were working well but the consultant has insisted on raising them because they weren't.

I do hope you get a good result from tocilizumab.