I keep wishing I would be put on anti TNF cos I imagi... - NRAS

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I keep wishing I would be put on anti TNF cos I imagine they are wonder drugs. Is this true?!

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For me, yes, in the last year I've only had a few days of mild flaring. If you follow DAS scores I went from 7.65 to 1.35 which is classed as 'medically induced remission'

I'm on Enbrel, I;ve had other problems with infections since starting but thats nothing compared to the pain and disability of RA.

I'm a very lucky girl! :)

earthwitch profile image
earthwitch

They can be wonder drugs, though not everyone responds in the same way. In the UK there seems to be a big reluctance to get people onto them early, which isn't the case in the US. Three are quite strict criteria for them though because they are so expensive. Some of it is about disease activity and diagnosis, and some of it is about having tried and failed (or been unable to tolerate) other drugs first.

If you have tried other drugs for a reasonable length of time and they aren't doing enough, then ask your rheumatologist very directly "do I meet the criteria for anti-tnf drugs". If you don't, ask why. If its because you haven't tried enough other drugs for long enough, then make sure you don't put up with ineffective ones, and to try whatever you need to so you meet the criteria for trying anti-tnfs.

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Teach in reply to earthwitch

Thanks for this. I think the prob is that I was about to start enbrel when I got septic arthritis, followed by septicaemia (3 weeks in h ospital followed). My consultant is now very cautious re use of any anti- TNFs for me because of higher risk of infection I did have one infusion of rituximab last Nov, but then the bug reappeared in my knee so I had to go back into hospital for a short spell. Apparently I have to wait till 12 months have gone since end of septic arthritis fears (ie till Easter 2013!).

k3let profile image
k3let

Hi I got my first anti tnf at 12 years down the line. Worked well then failed. Now on Humira- had a great start and it now not so good. No wonder drug for me but has taken a wee bit of the edge off although I still get bad flares and need steroids. Everyone is different though. Some people report great results.... lucky them!!! Fingers crossed for you, hope you get some pain free days soon x

Teach profile image
Teach in reply to k3let

Thanks!

Pands profile image
Pands

Yes has worked very well for me - I have been on Humira for 5 years now. Before that I had RA for 6 years and went through the mill of trying various medication mixes (and getting steadily worse). I am essentially well now and my RA is classified as not active - however the joint damage done during the first 6 years is not repairable and is now causing lots of problems.

I agree you shouldn't be on something that isn't working for you enough -and you won't lose anything by asking if you are eligible for anti-TNFs. Best wishes.

Teach profile image
Teach in reply to Pands

Thanks! I'm clearly not alone in this search for the medication that works for each individual.

helixhelix profile image
helixhelix

I don't think there are any wonder drugs for us, sadly, but it's more a question of what suits us best. All the drugs, whether DMARDs or biologics have different pros and cons, and work better for some people than others, so there's no straightforward "best". The other thing that I mull over is that I've got this disease for the rest of my life, and so over time I'm likely to need to try a whole range of different drugs as it seems that for many people they stop working after a few or more years. So although I'm sort of keen to get onto biologics, I'm also not in too much of a rush to move off DMARDs. But then the joint damage I'm getting on DMARDs is very slow, unlike others (like Pands above) and I'm miles better than when I was diagnosed. But if you don't ask, you don't get, so no harm in asking! Polly

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Teach in reply to helixhelix

Thanks for your viewpoint. It is so frustrating that there is no 'best' drug for everyone!

Tillytop profile image
Tillytop

Hello Teach

It seems to be a sad reality that, with RA drugs there are no guarantees - some drugs (and I included ALL the RA meds here) work brilliantly for one person and not at all for another, some work well for a time then have to be stopped, and so it goes on.

I consider myself one of the lucky ones. Although I had had RA for a good few years by the time the first anti-tnf became available on the NHS, when I started on Infliximab it WAS like a miracle for me and I had nearly five virtually RA free years - the consultant reported that "it had changed my life" and he was right! Unfortunately I had an allergic reaction and had to stop. I was then moved to Humira which certainly helped me - not as much as the Infliximab, but if I hadn't been "spoiled" by the Infliximab I probably would have thought that Humira was the best thing since sliced bread. After nearly 2 years I became allergic to Humira too and I am now on my third biologic (Rituximab) and the jury is still out as to how well that is going to work for me.

Although this is only my own experience and everyone is different, I know of people who have not looked back since starting their first anti-tnf, and people who have seen no improvement at all after trying 2, 3 or in a couple of cases even more. I think that thinking of any RA drug as a "wonder drug" is potentially setting yourself up for disappointment - I try to work on the basis of "cautious optomism".

I hope that, if you are given the opportunity to try anti-tnfs that they work well for you.

Tilly x

Teach profile image
Teach in reply to Tillytop

I'm sure you are right - I have to be patient and enjoy the better days, while gritting my teeth on the not so good days. Thanks!

cathie profile image
cathie

I'm interested in this because I've been on infliximab for some 8 years. Working very well now. So well that consultant thinks I may be in remission. So she's going to take me off all meds in new year, just to see. There's a couple of reasons for this, slight probs with my liver and a sun sensitivity which has disappeared in autumn sunshine. But I'm very concerned about being taken odd meds. So I'd say that anti tnf do work, but you're dependant a bit on the doctors and their theories which I don't think are always well founded.

earthwitch profile image
earthwitch

Cathie, are you talking about being taken off other meds or the infliximab? If its other meds, thats fine. If its the infliximab, before he takes you off it, make sure you ask a lot of questions about what will happen if you have to go back on one of the anti-tnfs. I know that one of them (and I'm not sure which) you are far likely to get an allergic type reaction if you go off it and then have to go back on it again, and it does seem that you don't get the same kind of response if you do have time off then on. The whole point of these drugs is really to keep you in remission, not to just take them "as needed". I would say the main concern is cost to the NHS and that is definitely not a good way to make a decision about treatment.

I also wasn't aware that liver problems and sun sensitivity were at all related to anti-tnfs. They could be just a red herring there.

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