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!
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Someonesmother
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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.
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
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.
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.
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
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.
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
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