ABATACEPT: I've been on Abatacept for 3.5 months it's... - NRAS

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I've been on Abatacept for 3.5 months it's been fantastic I've got my life back with this biologic drug. For just over a week I haven't felt so good I think I've been over doing things (maybe). I had my first RHUMY appointment since going on this I was devastated when the nurse told me if I'm not getting at least 75% success I will be taken off it and theres nothing else for me. She went on about the cost and NICE i know there are other biological drugs is this an excuse to get me off this drug i cant take Dmards I'm so worried

11 Replies

I’m on another biologic but I don’t think it’s an excuse, they have to show that it is working for you for the funding. That’s what my rheumy told me, if after 3 months there wasn’t significant improvement then I’d be taken off it. It is strange that she said there’s nothing else for you, have you been on many biologics? Even so you shouldn’t be left with nothing. I hope it’s just a misunderstanding and you can stay on it.

in reply to KittyJ

I hope you'right too and I've mis understood I felt she had an agenda wasnt the usual nurse. She wasnt unkind just focused more on me coming off the drug allthough I wasnt as good as I'd been I was so so much better than I had been maybe I'm watching too much politics oh dear. This is my first biologic and I've had 2 Dmards which resulted in emergency trips to hospital

I am also on Abatacept and I too have found it very effective. If you feel you may have been overdoing it and you really want to stay on it longer to see if that's the case , write a letter to your rheumatologist and say just that. I think he/she would be likely to at least accommodate you. It's worth a try. In my experience most drugs are not entirely effective but effective enough sometimes to allow a relatively normal life.

in reply to Biofreak

That's very good advice I'll do that today also one of the reasons I wasnt too good I need a knee replacement and had a huge track across the hospital with a very painful knee which I know is totally seperate thanks again

in reply to Pasjc

You're welcome. You could mention your knee in the letter as a contributing factor to the way you are feeling.

If you have got your life back it must be working.Maybe you have overdone it or caught a small bug and your bloods are showing this.They used to slam the money costs in my face saying its £10,000 a year but this is nhs and that's what we worked for .I am on my 4th biologic if Abatacept.I wouldn't say it's completely magic but it's taken the edge off .when I said I thought it had stopped working I was told it was working as blood tests every 2 mths say so.I will see what they say on my yearly appointment next month. Dont give up👍

Pasjc writing / emailing your rheumatologist to let them know how much better you feel on this drug is probably a good thing. Once things are written down it makes a huge difference to the way treatment progresses in my experience.

Saying there is nothing else for you is not only unkind, it's quite uninformed, personally I'd ignore her.

It is true that if you don't respond well to a biologic after a few months they will want to review it. But it doesn’t mean you won’t be offered another. In general doctors will want to find the drug that works best for you.

It does sound as if the nurse wasn’t the most supportive individual, and I have no idea what she meant by 75% better as this is a pretty meaningless phrase if there is no measure of where you started from.

I think you need to get more involved in this. Normally the way the doctors decide whether or not the drug is working well enough is to monitor your DAS score.

This is what the NICE guidance says

“Treatment should be withdrawn if response is not adequate within 6 months (as defined by an improvement in DAS28 score of more than 1.2 points) or if response is not maintained. Response to treatment should be monitored at least every 6 months.”

So you need to ask what your DAS score was before you started, and then what they think it is now. Nurses can also get DAS scores wrong, so check what she assessed for the different elements. It can be hard to be politely assertive in these situations as it’s all such unfamiliar ground. But its your body, and your health so you have every right to ask questions, and then more questions.

in reply to helixhelix

Thank you my next appointment is in 3 months I intend to go armed with more knowledge x

I’m on abatacept and have been for the last three years! Worked almost immediately and like you I got my life back. Don’t worry about the odd few days when you don’t feel well, this happens but soon settles. RA is an erratic disease. I find certain things aggravate my RA for a few days, these could be stormy weather, I’ve eaten the wrong food or done too much.

Stick with it. It’s been a wonder drug for me.

Also, I don’t understand how they can say there is nothing else for you? Other biologics work differently so if this doesn’t work they would/should try another class of biologic.

Keep well

in reply to Mistydawn

Thank you you've given me hope

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