enbrel faliure

[Someonesmother]

Hi All

Haven't been posting much but have been following posts and occasionally commenting. Been a bit occupied this year with shoulder op, then had grandkids for a couple of weeks, then sick on and off with severe asthma from chest infections and working and just trying to put one foot in front of the other. Have been on and off enbrel 3 times this year already and now it looks as though it is no longer working for me. I have been back on it after the last break for 6 weeks and I am in so much pain in my feet and ankles I am finding it very hard to walk, my hands are swollen and my fingers are very painful and locking at night and I have to pry them open, my wrists ache all the time. I am so fatigued I have fallen asleep at work a few times, ooops bit embarrassing, and I am now spending every weekend sleeping Saturday away and barely getting up on Sunday to do what I have to. Gave in and called rheumy nurse today who agrees that it sounds like it isn't working and it is 6 more weeks until my appt there so has sent me a script for prednisone to start and if that improves how I am feeling then it will confirm that I have developed antibodies to enbrel and it is no longer working. I feel completely gutted because it took so long to get on to enbrel and I have only been on it about 15 months. I also got off pred late last year finally and lost so much weight and now I will have to go back on it and stack all the weight I lost back on. I really hate this disease and feeling very flat!

[PFKAAde]

Hi someonesmother

Sorry you are having a hard time of it.

Just a word of hope! I was on Enbrel for a short time but it did nothing for me, they switched me to Humira and I've been in (clinical) remission since. Still a little bit of inflammation (though not according to bloods, just the big lump / pain in my wrist) and still have 'bad days' but overall pretty good.

Maybe it's just the start of something better....

All the best.

Ade

[Someonesmother in reply to PFKAAde]

Thanks Ade. It has never helped much with pain but has been wonderful for fatigue and ability to do a bit more. Oh well. On to the next thing I guess.

[PFKAAde in reply to Someonesmother]

Have you had a conversation with rheumatology yet? I assume so as you know about the antibody thing...

Have you been on other biologics?

Don't give up hope, if I hadn't had no response from Enbrel I wouldn't have been put on Humira, and it's been amazing for me.

Obviously we're all different as preacherman says, but maybe the next thing will be 'the one'.

Also they can work very quickly....

Ade

[Someonesmother in reply to PFKAAde]

Yeah I emailed yesterday morning so they sent a script for pred for the next three weeks. I have a lot of other issues so I am restricted in what I can have. I guess I just have to wait for the next 6 weeks to see the rheumy and see what happens

[Preacherman in reply to PFKAAde]

Funny, I mean ironic. I was on Humira for almost four years and it just stopped working. Now I'm on Enbrel and feel better than I ever was on Humira. So there ya go again, what works for one person doesn't necessarily mean it will work for another. Therefore, we " Keep Looking Up" and "Keep On Keeping On". Blessings.

[Someonesmother in reply to Preacherman]

Thanks Preacherman. I have had terrible trouble with drugs, can;t take nearly all of the DMARDS apart from Plaquenil and I was hoping Enbrel would be a success. It was for about a year for the fatigue and some joint swelling, never had much luck with the pain levels. Oh well three weeks of steroids and then three week wait to see rheumy then wait ti see what will be next and wait for approval and on and on waiting. So hard working full time when you feel so bad.

[PFKAAde in reply to Preacherman]

Yes that's my worry, if / when it stops working there isn't much left for me to try.

But I guess there are things in the pipeline. I hope. 😳

[Someonesmother in reply to PFKAAde]

Not a lot really. One new drug but it is still a while away.

[PFKAAde in reply to Someonesmother]

Ah...oh. *crosses fingers*

💉🙂

[Someonesmother in reply to PFKAAde]

Yep I live in hope that someone will find a cure. This has just reminded me how far I have come and how far I can fall when things go wrong.

[net2012]

Hoping they find an alternative for you and sending hugs. I was on Enbrel (wonderful drug) but allergic to it so have been on Humira for years and no flares since starting it

[Someonesmother in reply to net2012]

Thanks. I have had terrible trouble with drugs and this was the first one that I was OK on. Oh well

[Lucy11]

Im sending you a virtual hug. I truly understand how gutted you feel. I hope the waiting game doesn't get dragged out too long and you find relief soon.

[Someonesmother in reply to Lucy11]

Thank you, I have 6 weeks til I see rheumy then however long it takes to decide what next and go through the approval process with the government here. I am in Australia. Could be quite a few months yet

[shareasmile]

I have no good advice to offer, but I did want to thank you for making me laugh with that picture! 😃

[Someonesmother in reply to shareasmile]

Pretty much how I feel, all folded up and flat hahaha