Has anyone had RA for a really long time, and managed to keep it under control without ever having to progress to anti-tnf drugs?

[heatherp]

[Hidden]

Hi heatherp, I've had RA 17 yrs and in that time haven't met anyone who as had RA a long time and been able to refrain from Anti-tnf.

patients who have had RA a long time were unable to access such drugs as none were available years ago, and as soon as they did become available to try most long term patients were put on them to prevent any more joint damage.

There may be some of course, as everyones RA is different and progresses at a different speed,

Take care

mand xx

[Gina_K]

Looking forward to these answers!

Come on someone please, let us know? Please include original diagnosis too.

Seriously, Heatherp I agree with Mand you will get lots of people who claim to have lotions & potions and diets that cure RA, and I would never deny that diet adjustment helps & natural rubs sometimes better than prescription to ease pain, but doubt will slow down progression or course of RA, of course everyone is different, some very much so!

xxxx Gina.

[Hidden]

Like mand, I have yet to come across anyone with long term disease who isn't on biologic therapy. I have had RA 23 years and met quite a range of patients in that time! It's quite possible as time goes on that fast and aggressive treatment with DMARDS from the outset may well stem the need for such treatment in the future, hopefully. Slowing down the disease progression from the start may perhaps bring improved control.

I have been on anti-tnf for 8/9 years and whilst the disease has slowed down I am still getting more damage to joints. I suppose that's to be expected, no-one ever said it would be stopped in its tracks! One day I suspect the joints will just give up the ghost and I'll become a heap of bones on the floor What a pretty picture!!

Lyn

[Judi]

Hi Heather,

I was diagnosed with RA 1992/3 making it 19 or 20 years ago, and I have only just this year been trying anti-tnf's (biologicals). Don't know if this would be considered 'long term'.

Judi

[Hidden]

The only 2 people I have met with RA, One lady in her 70's has had it for 35 years and the other lady in her 40's who has had RA for 15 years, both have had control with standard dmards. I have started anti-tnf wothing 6 months of diagnosis...

Good question

[kezza]

I have had RA for 12 years and been on MTX for that time with no problems at all...... until now. I am having a flare so they are increasing my MTX and may also add another DMARD so not anti TNF - yet. kerri x

[Hidden]

Hi, I was diagnosed in 1992 after 2 years of symptoms.

I had 3 years on Ibuprofen, then in 1995 started Sulfasalazine (still taking it); Hydroxychloroquine since 2006 having failed on Leflunamide; 2 goes at MTX (still on it but only just coping with side effects - injections are better than tablets).

I have RA, secondary Sjogrens, and Hypermobility.

I was promised anti-TNF about 4 years ago, but they then changed their minds. (Cost?) If I lived in the next town I could have had anti-TNF years ago.

I gather I am not ill enough. So maybe I am lucky? (I don't feel very lucky!)

Nearly 20 years of RA and still just on DMARDS.

[heatherp in reply to Hidden]

Wow after all that and all this time do you have any joint damage?

[Hidden in reply to heatherp]

I have erosions in my feet and hands. Horrible flat feet and bunions (never ever wore high heels either!) And some wonderfully shaped fingers and thumbs. Zs and Swans. And my ankles are unstable. Fell over yet again yesterday!

[heatherp]

Thanks everyone - I was just wondering because I had assumed that since these days they treat agressively early on with DMARDS, it would only be very severe cases of RA that end up on anti-TNF. However iIt seems as if most people inevitably end up on them, so you wonder why the NHS doesn't allow them earlier on (actually don't wonder, it's all down to cost I presume)!

I was diagnosed a year ago (in fact exactly a year this week since very first symptoms, and have always considered myself very fortunate as I was diagnosed almost immediately and put on hydroxy by beginning of October and MTX by end of October 2010. MTX did wonders for the RA but couldn't continue due to extremely low white cell count, and now on leflunomide, although have had to reduce dose due to side effects. That said despite the side effects my RA has been well controlled with it. However for the first time at my rheumy appointment on Friday my consultant was seriously discussing anti-tnf and said I will probably end up on them. He was quite annoyed with NHS guidelines as he said that this country is the hardest to qualify for them, and said he didn't believe any private medical companies in the UK would ever pick up the cost of them. It just made me wonder if everyone ends up on them after a time (in which case, it would be good if everyone had access to them earlier on!). But I'm sure most people feel this way!