As Expected!!!

Just as I suspected, after 3 years or so of feeling reasonably comfortable my Enbrel has stopped working to control my sero positive erosive RA. I had a call from Rheumo yesterday to say that there are significant changes in my hands & feet from the last x rays last year, (which I sort of knew there would be anyway, given the pain on the right side of my right foot). They want to trial me on the 6 month intravenous drugs??? I have to go to hospital as a day patient the transfer takes around 4 hours & I think it will be probably be a biological one, have to go on Thursday to discuss with the Rheumatology doctor, so dont know which one yet but am suspecting Rituximab? Is anyone on any of these biologicals? I would love to know if they work & if the side effects are bad, as my theory is that a six month dose, given at once, what if it makes you feel like crap? how do you cope with the side effects & can they reverse them? I have read up on some of this, but would welcome any comments. Thank you all in advance.

8 Replies

  • I've been on ritiximab for about six weeks. I think it might be working, I seem to be holding up although I still take painkillers when I need. But I've been quite ill for about a year after the previous rheumy withdrew my meds.

    I dont think there are any significant differences compared to enbrel, the advantage is that you dont need to inject it every week (if it works) and you get monitored by the hospital properly. There are some very very rare side effects but my experience is of a very gradual improvement in my wellbeing (I think - I said it was gradual). Its a bit complicated because they give you anti-histamines and steroids with it where I had it.

    So dont worry too much, be informed. But if it works it could take you forward in the same way that enbrel did.

  • Oh thank you! I had a really good reaction to the enbrel initially, but I just worry that if it doesnt suit you, you have it in you for 6 months & feel like crap now, so dont want to feel like that for 6 months! Take care & thank you for your reply. I will keep you posted. :)

  • There's not much the ritiximab can do I think. They're very careful with the infusion so that you dont have an adverse reaction there and then, but its bliss to be away from the weekly injection to be honest. I hope it works for you. It can take 6-12 weeks to get going and I dont quite understand how that works but that's what they say!

  • I had a course of Retuximab in November/December. After the fatigue of first two weeks and then the second infusion I started to improve and now on minimal pain relief and 7.5 mgs Prednisolone which will reduce to 5mgs next week. How long this will last I don't know as it was my first infusion. Hope you have success.

  • If only there was a magic wand that would let us know which medication would work for us. I was told that Ritux does work best on sero-positive. Although I am sero-negative I had one round of Ritux as trying to find something to work after Enbrel and Humira (looking back I don't think our hospital had starting using some of the newer infusions then). For me it did not work and you have to wait the six months so had oral steroids. Farm

  • Thank you Farm123 & Marm for taking the trouble to reply to me. I have appointment with the Rheumo doc tomorrow so will let you know what the decision is then. Take care. :)

  • Hiya

    It sounds like Rituximab. I failed on Enbrel too. I've had 12 cycles of ritux in nearly 8 years. I don't get any side effects except tired a few days after the infusions. Like cathie says they give you a steroid drip before the rtx to ease side effects so that helps any sore lness for a while. Let us know how you get on.

  • Oh thats brilliant! Thank you so much for taking the trouble to reply! that makes me feel a bit better about it all! I will let you know which one they decide on after the appoint tomorrow. Kind regards & take care :)

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