Enbrel not working

[harcourt2]

I've been on enbrel ever since it was marketed but now it seems my flare ups are almost on going , my R A is only in my knees and ankles so I'm lucky in that respect.

I'm having to have my knees drained and shot with a steroid which can last as long as 3 months .

My Dr. said it was too soon to have a shot and even though I've been taking prednisone daily for this flare up the minute I wen off the prednisone the flare up comes right back.

Not sure what to do.

[Hidden]

I’m not sure I’m understanding correctly, why are you stopping taking the pred if it is working for you?

If it’s your Dr saying to stop it then I would go back to them and tell them you are suffering too much off them and maybe they could give you something different. If you don’t keep telling them what’s not working then they can’t do anything about it. Sadly sometimes you do have to pester to get the help you need. Let us know how you get on 😊

[JGBH]

Hi,

I was on Enbrel for 15 + years. It gave me my life back but has stopped working and have been having an incredible RA flare up.

My rheumatologist has now started me on another biologic: Truxima infusion. Am going back for the second part of infusion on Thursday then I hope it will then kick in so that I can go into remission again.

Contact your rheumatologist/ RA nurse to request a new biologic.

Good luck.

[NeonkittyUK in reply to JGBH]

Hope Truxima soon works for you, I am on the original med of Truxima, which is Rituximab. It took two months to work fully but really worked for me and still is. Fingers crossed it keeps on doing what it is doing and Truxima does the same for you. The freedom bewtween the infusions is nice too. I go every 7-8 months. Good luck! x

[JGBH in reply to NeonkittyUK]

Thanks. Hope it carries on helping you.

[NeonkittyUK in reply to JGBH]

Thank you too!

[ragurl]

I was Enbrel for many years, switched to Humira it worked even better. Good luck 🍀

[ruth_p]

I agree with JGBH you need to see your rheumatologist and talk about options. You really don’t want to stay on steroids too long as the side effects can be quite viscous x

[Jillyanne]

As soon as my Enbrel wasn’t working as well my Specialist took me straight off it and within a couple of months started me on anothe bio drug

You need to contact your specialist not GP

[JGBH in reply to Jillyanne]

Hi, which bio drug have you been switched to? Hope you don't mind my asking. Is it working well for you and how long did you have to wait to feel well again?

Best wishes.

[Jillyanne in reply to JGBH]

Hi, I had a choice of 3 bio drug to choose from, I also have Sjorgens syndrome so my nurse told me that Rituximab would work for both , so that is the only reason that I picked that drug and yes it works .

Unfortunately I don’t think it’s as good as Enbrel but it’s ok

[JGBH in reply to Jillyanne]

Hi

Thanks for replying.

I have started Truxima infusion (a biosimilar of Rituximab) on 28 March and went for my 2nd infusion yesterday. Feeling incredible exhaustion. After 1st infusion I was more or less pain free for 3 day then the flare up came back, could hardly move. I am pain free today but can feel it will return soon.

How long did you have to wait before the treatment kicked in.

I have heard from people that it doesn’t work as well as Enbrel! I too have Sjogren’s very badly. Do hope it will work for me.

Best wishes.

[Jillyanne in reply to JGBH]

You were probably pain free for 3 days because of the steroid injection ? I am quite lucky and it worked straight away for me .

Some people have to wait a while for it to kick in , so I really hope it kicks in soon for you

If you are struggling ring the nurses , mine is really good and very helpful

[JGBH in reply to Jillyanne]

Thanks. I don’t think it’s going to work straight away because have been going through an incredibly hard flare up.... keeping fingers crossed it will work. Am already on steroids.

[Jillyanne in reply to JGBH]

Fingers crossed for you , I had bad flare up a few weeks ago, had to have steroid injection and liquid morphine

So feel your pain 😓😓

[NeonkittyUK in reply to Jillyanne]

Ritxuimab was better than Enbrel for me! Enbrel stopped working after five marvellous weeks and it worked within a few hours for me ... like a miracle .. I was so sad it stopped .. and I had a reaction too to it, but Rituximab has been better than anything I have ever had. We are all different! Many of us get to try a few that don't work ... before we find one that really does!

[Hezekiah]

How many years on Enbrel all told? I wonder if the medical profession keep stats on how long folks can be helped by a medication, before they need to be switched to something else.

[Maggsie]

Interestingly, I'm at the same stage. 15 years on enbrel 14 of which were great, until I got briefly changed to benepali. Been back on Enbrel for 9 months now but it's just not working as well as it used to. I'm surviving on steroid injections and pain meds. Due a TKR in a couple of months and am requesting a change of biologic straight after the op. Problem is, which one do I choose?

[JGBH]

Hi

I had 2 TKRs last year. I was still on Enbrel although it had already stopped working as well as it did , I suppose because there was extra inflammation in both knees which should have been replaced earlier on really. So post operation, more so after the 2nd one the RA flared up to an unbelievable level!! Had to add methotrexate injections (but had to stop as can’ tolerate methotrexate makes me very ill indeed) then on steroids plus steroid injections, but still not under control. So my rheumatologist switched me onto Truxima infusion. Not sure it’s going to work for me yet.

The best thing is for you to discuss which biologic would be best for you.

Good luck with the knee replacements. Not easy and you will need to keep up with physio exercises every day.

All the best.