Enbrel (Etanercept) anti-tnf not working no more...help!

cornishman

Dear Forum

The monster has returned...the big bad Wolf is at my door and knows he knows his way in now! My anti-tnf army called Enbrel (Etanercept) don't seem to know how to arm themselves anymore...or they are lazy at shooting the bad guys! I have been safely taken this drug for 5 yrs with good success really until last year when that changed. I tried Humira for 6-8 weeks with no more success then went back to Enbrel with Methx combo....still no result so added 30m Predisolone to equation and found some relief. However...cant be doing high Pred. cocktail for ever can I? Now I have ditched Methx and am on 10mg Pred plus Enbrel but still bearly able to walk...I'm a joke! What next everyone? Please give me your thoughts and experience...I really don't want to take Mabthera (Rituximab) but it seems the last option and people have had good results on it but....it reads like a death sentence with all that infusion business, when i read the fine print I said no way jose!...am I wrong, please help me decide!

Cornishman Dave

marrianne

Dave ,So sorry you are struggling after some goodish years.Hope someone will know more about the anti tnf route , and that one in particular .I have yet toand will be of more help to talk be on anything more than the disease modifyers ...... Methotrexate I found it really bad but now on another one .We all seem to have good phases and then along comes a massive attack ...flare whatever you want to call it and it knocks us back a lot ,Hopefully you can get on something you feel more confident with and it starts to do its job .....well if not I hope someone here will have had the experience and can allay some of your fears I wish you very well and hope you stay in touch to let us know how you are .Marrianne

mig

Cant really help but wanted to say am thinking of you .(((()))) Mig

phoenixoxo

Hi Cornishman Dave,

Currently I'm on etanercept plus 10mg prednisolone, but due for a review as my consultant isn't happy. He plans to throw in a DMARD and throw out the steroids, but if this doesn't work out I imagine he might want to attempt an alternative anti-TNF treatment and rituximab has been mentioned so I've read up about it.

From your post it seems you're most worried about what might happen to you during the infusion: fever, wheeziness, rash, fall in blood pressure. Not much fun, no! But you would be monitored throughout and the infusion would be delivered at a slower rate if you were to experience any problems. Apparently it's very rare that a patient's symptoms are so bad that the treatment is stopped. And I've read also that you might be given a steroid injection beforehand to reduce the risk of side effects.

Hope this helps; I got the info from the Arthritis Research UK website. If you've any other concerns, just let me know.

Best wishes,
Phoebe

tillytop

Sorry the Enbrel is no longer doing its stuff for you and that the Humira didn't help.

I am on Rituximab and have had no problems with it so far. This is my third biologic and I was nervous about it but it is certainly working for me. I can't say I enjoy the experience of going for the infusions - mainly because Rituximab infusions take so long - but I would say that the benefits are definitely worth it. I was due my second set of infusions 6 months ago but they have been delayed due to other health problems. Nearly a year has passed now since my first infusions and I know that the Rituximab is still helping because there is no way I would have managed before with no meth and 12.5mg pred propped up by anti-inflamms and painkillers. At this point I am struggling to stay ahead of the RA but even so, to be where I am RA wise a year after the infusions is pretty impressive I reckon. I was told by the hospital that the average time between Rituximab infusions tends to be somewhere between 6 and 18 months - and I met a lady at the hospital recently who goes a year between infusions with no problems at all. The only thing to bear in mind though is that Rituximab can take at least 6 months to work - so therefore at least 6 months potentially before you have an idea about whether it is going to work for you. But when you have the infusions they routinely give steroid infusions alongside to minimise the risk of a drug reaction and I certainly found that helped with the joints in the interim.

You say that Ritux is a "last resort" - that isn't the case. At my hospital the standard practice now is to go straight for Ritux after failure of one of the other biologics and I think that might now be the standard NICE guidance.

In terms of side effects and small print - just to say that I read the information when I first started and it seemed to me to be almost identical to the information for the other biologics I had taken (Infliximab and Humira)

I know there is another forum member currently on Rituximab so hopefully he will see your post and reply too.

Good luck with whatever you decide - and if you do go for Ritux and have any questions, please don't hesitate to ask and I will help if I can.

Tillyxxx