Enbrel losing efficacy

[Rawelham]

Hi all. I've been on Enbrel for almost 4 years in combination with 20mg subcut MTX. I have been having my first real flare up for the past 6 weeks or so and am waiting for an appointment with my Rheumy next week. I have spoken to the specialist nurse as have been unable to come off the reducing dose of steroids that she arranged for me and had to see my GP to put it back up; she thinks that it may be the Enbrel losing efficacy and talked about it being changed to an alternative.

Does anyone have any experience of Enbrel failing? AFter how long? And how did it present with regards to your symptoms? What action was taken in changing your treatment?

Thanks in advance.

[AuroraB]

Yes, Enbrel failed after about 9 months - just had a prolonged flare of increasing intensity over about 2.5 months - so clear it wasn't just an infection or something that had knocked me for a couple of weeks. Was offered high dose steroids to get some control of symptoms, had an appointment with the nurse to do the disease scoring, and then after a meeting with the rheumatologist was given the option of another biologic.

[Rawelham in reply to AuroraB]

Thanks for your reply. It's been very helpful. Like you I am having a flare that came on gradually and I'm hoping that my appt on Tuesday will involve a new score and discussion on a different treatment.

[Jora]

Sorry to read that. With me, Enbrel hasn't really worked at all. I thought it was effective to begin with , but then I was on about 12.5-15mg Prednisilone. I started last July. I'm now on 6mg of Pred, Plus 20mg MTX, Sulfasalazine, hydroxychloroquine, folic acid, and Enbrel. I'm been in flare for over 2 weeks, and my last blood tests bore that out. ESR and CRP were very high again. Joint-wise, the RA flare is most visible in my knees which are massively swollen.

So, like you, I am anticipating a switch to another Anti TNF, possiblY the infusion-one. My next appointment is on 2 March.

I hope we both get the best under control. Jo

[Rawelham in reply to Jora]

Thanks for your reply. I am disappointed it looks like Enbrel is no longer working after a steady 3.5 years on it. My blood tests aren't raised currently but nurse said a flare is not always reflected in them. My main problems are pain in my right hand and wrist joints, both hips, knee swelling and pain and overwhelming fatigue. Combined with a 5 year old who rarely sits still it's been a challenging half term holiday! Thank goodness for my husband and my family.

Good luck in your appt in March.

[catgirl1]

Exactly the same happened to me..Embrel worked fantastically for 4 years and then stopped. I was then tried on Humira..with no effect and then Rituximab infusion x 2 back in September and again - no effect. I am currently waiting for yet another treatment to be approved. I have been in a flare for nearly a year now just managing on steroids and painkillers 😔 .. However I know I'm in the minority and have been unlucky. Hope all goes well for you 🍀

[Hidden]

It sounds like it hasn't really worked that well if you are still on steroids. Maybe if you change drugs it will work better and you will be able to come off the steroids. It's always scarey coming off drugs but the new ones are often a blessing.

[cathie]

So sorry to hear about things not working. I've had nearly ten years of success on infliximab, was taken off it because of (wrongly) suspected lupus and now have tried Enbrel, Cymzia and Ritiximab. I'm not sure if this latter is working or not as you get steroids with the infusion, early days!!

But this is a horrible place to be isn't it, as the overlap between each drug takes time. Although my dr was good about this - he said as long as the next dose of enbrel/ cymzia was due then I could move on. I think there needs to be more research into what makes certain people respond to certain drugs. And how to stop us rejecting them/ effects wearing out.

[Chrissycl]

This has just happened to me after 3 years using it. I just didnt seem to be getting the same relief from it injected on a Saturday and by Thursday felt as if I was needing another jab noot too much more pain but a lot more stiffness and fatigue. Consultant recommend I change biological so after seeing my anti tnf nurse I chose Humira, after waiting a few weeks to clear the enbrel from my system I had my first shot last Monday no change yet but they said it could take up to 12 weeks . Hope this helps and you start to feel better soon

[Gillian1163]

I had a good 10 years before I needed to change. Gillian

[jmax99]

I have been on it, I think 9 or 10 years at this point. My diagnosis is Psoriatic, not rheumatoid, arthritis. I have noticed over the last month or so more soreness and stiffness in the mornings and when I sit for long periods. And, the skin plaques which Enbrel usually clears completely, are not clearing with the shots anymore.