If they get the meds right do you still have pain and... - NRAS

NRAS
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If they get the meds right do you still have pain and feel ill.

jilly1
jilly1
13 Replies

Hi , Everyone , I have only been a member for a few months and have read lots of blogs and questions. I have started on Meth a couple of months ago after a few years of pain and feeling really ill , my question is , if the meds work will i have pain free joints and not feel ill all the time. I am asking this because I cant find the answer anywhere and i would like to know what the odds are to ever feel normal again . thanks for reading this and any advise i may get . ......jilly

13 Replies
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helixhelix

The odds are pretty good these days, so keep hoping! I'm certainly 95% normal now, and my boxes of painkillers have dust on them, which I find amazing after the trouble I had to begin with, which is several years ago now. I think that about 20% of people have very mild RA that responds very well to the dugs and hardly changes their life at all, about 20% have an RA that is the opposite. So most of us are somewhere in between. I can now go for days without really thinking about RA, and feeling ok most of the time. So hopefully will happen for you too. Polly

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jilly1

Thanks helixhelix , that is so good to here , I have 3 replaced joints as it is and to be honest i am so fed up with pain . My shoulders are really bad so I am hoping they might get a lot better . It is hard to live with pain everyday and painkiller only dull it down dont they. It has taken the doctors so long to give any help I think I had quite a lot of damage before they put me on the Meth . again thanks that helps a lot ...... jilly x

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Hidden
Hidden

ive had RA over 3 years and an increase of meds, i am now on 4 diff meds and they still dont work for me, im hopefully soon be getting enbrel injections on top of what im taking hopefully that will work for me ,,,hope the methatrexate works for you ,,,vicky

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jilly1

Hi Vicky , sorry to hear it isnt working for you after 3 years , I know what it is like to not have anything help , they said i had OA for years and wouldnt test me for RA . I hope the enbrel works for you .....jilly

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Hidden
Hidden

If medication works.. l minimal pain

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Hidden
Hidden

I'm in same boat as Polly - or hoping to be when I raise my dose of MTX next week anyway. I am lucky that my GP believed and supported my efforts to get a diagnosis and start mtx relatively soon (about 9 months after symptoms started but he referred me much sooner). I think the longer it is left then the longer it takes to get under control though. However the odds are that once it works for you it will make a huge difference as its done for me. You might need a combination of DMARDs to make a real difference and keep pestering to be reviewed and have your meds tweaked etc. It took me about 3 months to take the edge off and 6 months to feel generally well and 9 months to stop having any pain - and now at 14 months being told that the disease is 70% controlled but a rise in dose of injectable MTX should see off the remaining 30 %. A lot depends on how well you can tolerate the drugs too. Good luck and hang in there! Tilda x

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Hidden
Hidden

Hello there, I have no pain worth mentioning and, more importantly to my mind, no longer feel ill or knackered. For me it was increasing the mtx to 25mg that seemed to do the trick. I have secondary OA but I'd describe the 'pain' of that as soreness, usually. In addition to meds I try to keep active - swimming & walking mostly - and to listen to my body & avoid foods etc. that seem to make me feel yuk in whatever way.

I expect you already do all these sorts of things anyway and I think it probably is fairly unusual to have virtually no pain. But, thing is, you obviously know what you want and because the health service has a slight tendency to fob us off it is all too easy to start thinking that our perfectly reasonable goals are unobtainable. For example, you (I'm talking about 'me' really) go along to the hospital & see a waiting room packed to the rafters with people wincing and barely able to move and start thinking that 'putting up with it' is the name of the game. Well I don't think it is. If the docs don't exhaust every avenue to try to ease your pain & get you feeling normal again, then they just aren't trying hard enough. Apologies to your rheumy if he or she is an absolute godsend, but I'm sure you understand what I mean!

So keep believing that things will improve a lot, Luce x

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minka
minka
in reply to Hidden

yep i know what ya mean wooley im on no meds for it only me own that i do from docs now getting me knee ripped into but mri shows nothing wrong been like that since april now this thing moving about

and ya get 10mins if ya lucky with a rumi man and they dont even look at you proper cos nothing is showing up in your bloods boarder line that is

and you come out and saay to yoursel am i going batty or is their a pain there and their

just like watching bread on telly at the dole NEXT

REGARDS JOHN

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Hidden
Hidden
in reply to minka

Yep, it's about keeping your expectations high until 'they' come round to your way of thinking! (But I'm not dissing those healthcare professionals who do a wonderful job, the problem is those who don't plus the sluggish, under-funded system.) I bet you get a few people smiling in the waiting room.

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oldtimer

Keep on pressing for changes in medication until you do have levels of pain that you can cope with and don't feel ill all the time.

Life is for living!

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jilly1

Thanks to everyone for all your help, you have given me lots to think about . I am going to speak to the doctors and nurses because i am a long way from feel well or the pain improving . Hope you are all feeling ok even with the very cold weather . .....jilly x

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helixhelix

yes, do speak to them. like Woolly says, I think you do have to push a bit to raise expectations. Thinking back on it, my rheumy would probably have just left me on MTX if I hadn't kept asking whether I could get any more improvements. The MTX was working to a degree, but was still far from normal. It took well over a year of nagging and asking and more things being added in, but I' m hugely better than I was now. If you don't ask, you won't get...... Polly

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jilly1

Thanks Polly, I think after asking the question to you good people on here , i need to ask more questions about my health, i have found they don't tell you anything you do need to ask . thanks for your help ...jilly x

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