Anti-TNF treatment - Can I have more than one attempt?

Sandey

I was on Enbrel for 12 years and I believed it to be working really well, but I came off it to go on a trial for a new drug in the hope that I would achieve even better results. I signed a form saying that Enbrel had failed (although I disagreed with this).

Unfortunately the trial drug failed and it was then that my consultant told me I wouldn't be allowed to return to Enbrel because NICE guidelines state that you are only allowed one attempt. I hadn't been told this before.

Since then, I've read the guidelines and my impression is that patients are allowed up to three attempts.

I'm now on TCZ instead, which is not working and I'm desperate to return to Enbrel, which was the most successful of any of the drugs I've been on.

Could anyone tell me if they have had more than one attempt at anti-TNF treatment and any suggestions on why my consultant has told me I can't go on it again? I never had any side effects during my time on Enbrel and in the two years that I've been off it, my arthritis has returned with a vengeance with massive joint damage.

I would be grateful for any advice please.

dreamdaisy

I think it is unusual to be allowed to return to a drug one has already tried, in all my years on here I cannot remember someone being allowed to do so. I have tried infliximab, Enbrel and am now on a triple therapy of humira, injected meth and sulph. Once the humira fails (which it will, in my experience they always do) then that's it, no more anti TNFs for me because my hospital runs a 'three strikes and you're out' policy, which is fair enough. I've cost them a pretty penny over the years and the NHS is not a bottomless money-pit. DD

As5567

Sandey wrote:

I was on Enbrel for 12 years and I believed it to be working really well, but I came off it to go on a trial for a new drug in the hope that I would achieve even better results. I signed a form saying that Enbrel had failed (although I disagreed with this).

Unfortunately the trial drug failed and it was then that my consultant told me I wouldn't be allowed to return to Enbrel because NICE guidelines state that you are only allowed one attempt. I hadn't been told this before.

Since then, I've read the guidelines and my impression is that patients are allowed up to three attempts.

I'm now on TCZ instead, which is not working and I'm desperate to return to Enbrel, which was the most successful of any of the drugs I've been on.

Could anyone tell me if they have had more than one attempt at anti-TNF treatment and any suggestions on why my consultant has told me I can't go on it again? I never had any side effects during my time on Enbrel and in the two years that I've been off it, my arthritis has returned with a vengeance with massive joint damage.

I would be grateful for any advice please.

I have attempted Humira twice, I gave up Humira to go on Ritiximab which gave me a reaction. When I was put back on Humira I was prescribed a double dose (Once per week rather than once every two weeks)

I guess your consultant doesn't see the benefits of putting you back on the drug which might be for some good reasons. My suggestion would be to have a good talk about it and get your points across about how you felt on the drug in comparison to now. Chances are if it worked in the passed and didn't stop to work then its going to work again. The only reason I was put on double dose of Humira was because the drug was only lasting a few days rather than a few weeks, the double dose worked for me for about 2 years until one day it suddenly stopped.

Sandey

Thank you for your reply As5567. It's reassuring to see that you've been allowed back on Humira after stopping it to try something else. I will have to try to convince my consultant that returning to Enbrel is the best option for me.

thistlegirl

I was taken off infliximab and put onto adalimumab, hospital choice, I think it was to same money, then put back onto infliximab when it failed (dramatically!)
So yes I had 2 attempts on a drug.
Talk to your doctor again, I hope he listens to you, or maybe you next drug will be even better?
Jenny

Mormodook

It seems a shame that in order to do a trial to help out you've ended up worse off through no fault of your own. Is there one anti TNF that is the most commonly used first anyway ?
Good luck

janie68

Hi Sandey

I am on my 6th biologic now, so unless it is your CCG/health authority that says you can't. You should talk to your Rheumy nurse about this, this could mean you having a better quality of life being able to start another, also your GP who can help. You can also appeal if the CCG turn you down.

I am a bit cross on your behalf that they have quoted the NICE guidelines as a get out clause because that is not fair. But it does depend on funding in your area.

Good luck!

Janie xx

Sandey

Thank you Janie. It's reassuring to hear that it is possible to have more than one attempt at a biological treatment. I'll definitely discuss it with my consultant again.