Time to give up on Enbrel?

[Maggsie]

At the end of 2017 I was switched from Enbrel to Benepali with awful consequences. Eventually in April last year I went back on to Enbrel but it's just not been anywhere near as effective. I've switched from Mtx tabs to injections s to see if that would help but I just seem to be in a vicious circle of 'flare, steroid injections, flare, steroid injection '. The relief I'm getting from the steroids is now only about 6 weeks.

When I saw my new consultant in Jan 2019 we discussed changing my biologic but I agreed to persevere for a while longer in the hope that things would settle down but here I am back in back in a flare.

Is it time to give in and try something else? Has anyone else had these problems when switching to and from biosimilars?

[Hessie5]

Hi Maggie - sorry to hear about your yo yo ing of meds.

I am in the same boat and to be honest feel fed up. I am back on high does pred as the inflammation has shot back up - should be on yet another biologic next week! Praying this one works.

It appears to be part of this cycle with RA, the alternative is just damage and pain. So can't win - I don't get this crazy disease, by doing good I have got worse 😕

Let’s not give up 😌

[rawillbebeaten]

Hi Maggsie,

I agree that RA is so difficult to manage and whatever Med you're on it doesn't seem to work for ever.

I was on Enbrel for 14 years and it changed me from constant pain and extreme stiffness to leading a "normal" life.

Managing fatigue is still one of my main challenges. That's when Inflamation and pain aren't leading the charge!

I won't go into all the ins and outs but I had to come off Enbrel. then commensed 4 x Very difficult years of trying other things -

In July I was switched to Humira - another Anti TNF (not 100% sure what that means!) But - things are much better. It's what I'd pushed for, it seemed logical to me!

I may have to switch to a Bio Similar, but I will resist if I can - my body seems extra sensitive to changes.

I understand that the reasons for them is:

- the company that does the research, trials, and launchs the drug has exclusivity for 10 years so they can re-coup those costs. It's then open to other companies to supply as well, so the make up should, in theory, be very similar but at a cheaper price for the Health Authoriy. We are in their hands!

I would say that if Enbrel worked then a drug that works in a different way MAY not

Somewhere on here I got the info about the 6 different groups:

Anti TNF

B Cells - Rituximed didn't work well enough for me - things were better but not as good as on Enbrel

1L-6 Cells

T Cells

1L1

JAK Inhibitors

Aparently there are 20 + different Biologicals

Good Luck and don't give up!

Something WILL work, it has before

I have to remind myself that it's 17 years since I was diagnosed so my body is older and less flexible, regardless of the extra issues

Michele x

[Maggsie in reply to rawillbebeaten]

Thanks Michelle, that's really helped. I never clicked that another anti tnf might be the simple answer.

[rawillbebeaten in reply to Maggsie]

Same here - it took me 4 years and then some pushing! I hope it's the answer for you too. Wishing you all the very best

Michele x

[Bessieboo1]

I was on Enbrel for 4 years and then changed to Benepali which I didn’t get on with very well. I saw the biological nurse in November and she agreed with me that there had been sufficient deterioration to change to a different biological. In December I was changed to Imraldi which is the biosimilar to Humira. I have had 5 injections now as they are fortnightly and I feel I am getting slightly less tired after each one. To start off I was feeling really crappy for a week post injection but this was about 3/4 days last time. Pain still the same but I definitely have more energy. Good luck with your next treatment.