A bit of a quandary

[Leviset]

I’ve been treated at the specialist Rheumatology Hospital, Chappell Allerton, Leeds since 2000. I cannot sing their praise more highly, an incredible resource led by Prof Emery. I got RA in 1996 at a time here in Sheffield when Rheumatology had a pretty poor reputation - gained this knowledge by being treated in Sheffield for the first 4 years. In 2001 I had my first operation to fuse my left ankle. Because I was still at work I was operated on in Roundhay Private Hospital by the excellent ankle specialist Nick Harris. I do not approve of Privatised Treatment but because I was in a Senior IT Role I was entitled to BUPA. Although the operation was done excellently, the actual time in recovery was dire - 2 agency nurses looking after 48 beds over a whole weekend shift. I’ve had treatment on the NHS at Chappell Allerton a number of times since 2001 and it was superior in every way. Private is fine if you want your own room and a haut cuisine food brought to your room via a waiter. After retiring in 2004 on ill health, Nick Harris continued to do all of my further surgery on the NHS. In Rheumatology I continued under Dr. Sarah Bingham - they have tried and persisted with my RA Treatment over the years, many different drug regimes, numerous different Biologics and a couple of trial drugs. I’m afraid to say that just a couple of Biologics appeared to initially make a difference, only to fizzle out after a year. Does anyone else share my fear(s) in that because we are told about the cost(s) of treatment (I’m currently on weekly home injections of Abatacept which I’m told costs £13k per annum per patient) I begin to feel either (a) I’m not appreciative of the drugs and/or illogically feeling I’m guilty after all this cost and it makes no difference (b) I sometimes tell them I think it may be working, when it isn’t because I don’t want their efforts to be in vain or (c) because of being on a number of different Biologics over the years I don’t know what it would be like to NOT have treatment? Rather than having a ‘silver bullet Lazurus experience’ the drugs may be keeping me in some sort of level minimal flare condition?

I once, when I was at my worst, had to be an inpatient for 4 weeks. A young woman (33) was brought in on a stretcher totally unable to walk and take care of herself. They used to lower her into the exercise pool very gently on a hoist. 3 weeks later she was discharged and walked out of the hospital carrying one of her children.

[Amy65]

I feel exactly the same as u .I'm of biologics since April and my body has went into overdrive attacking it's self my ESR is 115 my eyes are affected to as I have RA and anklossing spondlittis visually impaired uvittis by this .saw rheaumtoglist in Aug I looked to well as I was just back from holidays he said I'm end of line with biologics put me on pain patches that's all review 22nov .I'm in agony eye specialist put me on oral steroids she's furious the state I'm in and going to email my rheaumy .gp had to drain my right knee 3syringes then steri9d injection he told me my ESR is way to high be interesting to c what happens at my review .hope u stay on biologics for as long as u can hugs amy

[helixhelix]

First off, don't feel at all guilty about the cost of biologics. Perhaps think instead of the enormous cost to the NHS each year of alcohol abuse - something like £3.5billion. Don't you deserve your treatment hugely more than some stupid drunk who falls over and breaks a few bones, needs an ambulance to get to hopital, plus operation, plus time in hospital, plus physio afterwards? Which probably costs a similar amount.

And yes, maybe for you these drugs aren't a magic bullet, sadly. But if they are doing something then that's a tiny help. And they are creatimg new ones al the time, so perhaps soon you'll have your magic bullet. Hope so!

[pauluk60 in reply to helixhelix]

you make me wonder plenty support and no support

[pauluk60]

sir i havent been diagnosed ra but a flare about 2 months ago the flare from hell is what i called it pinned to the chair 10 days i did call doc who prescribed tramadol which i excepted as only treatment he could offer at time would you say i should have been hospitalized for further tests i have osteo but to that was something else just with your knowledge you could put your mark on it seeing Ra November 15th

[Leviset in reply to pauluk60]

Alas I’m not a Doctor! You would need your GP to get you a Rheumatology appointment at the hospital where they’d do a battery of blood tests and others. Your diagnosis should then be arrived at by a number of results.

However RA is very devious and can be misdiagnosed as something else.

Good Luck

[cris1728]

I think we would all like a miracle treatment and often its not there. I am also treated at Chapel Allerton and feel privileged to live locally and to attend what is a centre of excellence. I can totally understand your frustrations with this disease and wanting to feel " normal". I know I am constantly looking for improvement in my condition but when I look back to where I was 6 years ago I realise I am in a different place and it is a better place. I have not had biologics yet but have had many steroid injections and methotrexate.

You are worth the expense of these drugs never think otherwise. Think back to where you were before you started them, you may see a difference. Also if you had not had them would your disease have progressed further? Hope you feel better soon xx