Where will I be in another ten years?: Diagnosed with... - NRAS

NRAS
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Where will I be in another ten years?

Diagnosed with RA fourteen years ago and to be honest I've never experienced many days that I'm totally unaware of it. I seem to have been classed as severe from day one although I still get around as normal, albeit with painful joints. My last Rituxibab (Truxima) has yet so give any relief after six weeks and Ibuprofen is not dealing with the inflammation.

Not sure why I'm writing except I guess I just need to feel there are people to really understand without a fit and well person saying, "Ooh I'm just as bad my little finger aches a bit today, not sure why".

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Hi. I am sure loads of people relate to what you have written and will respond. 14 yrs is a long time to have it lurking to a greater or lesser extent. Responding to your title, I certainly hope there will be much more effectively targeted treatment coming soon. My OH had breakfast and sighed deeply this morning. Fatigued before he has hobbled off to start the working day. I feel for you both.

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Thank you for your reply Norisa, much appreciated.

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Hi juneann......If it's any consolation I went on to RTX in 2016 after being diagnosed in 1999, & I am feeling better than I have for years.

RTX can kick in at any time ..but usually a bit longer than 6 weeks, so don't be too despondent you haven't felt 100% overnight.

I honestly can't remember how long I waited..but it was at least 3 months.

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Thanks AgedCrone, I have been on RTX for the last three years, just didn't expect to be in a full flare six weeks on. My last two elbow injections brought no relief and Pred worked for one of the four weeks I was recently on it. Guess I'm just feeling sorry for myself, plus I have a husband who pushed through every obstacle which makes me feel weak.

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We all have those days juneann.....I'm sitting here with I i epacks on my hip & knee...kidding myself they will be better in the morning!

Well I can hope can't I?

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Prayers for you and new treatments that are effective sooner than later ❤️🙏🏽🙏🏽

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Hi Juneann, just read this post. I sympathise with you very much. I haven't had this disease nearly as long as you have but can honestly say, for the last three years, not a day has passed without feeling the effects of it! I am not easily knocked down and if I am I get back up to see another day but I now carry weight I didn't before! A reminder every morning that I'm not superwoman that can tick off the to-do list daily! It's adapting that's difficult. Accepting in your mind is one thing, Changing your practical routine is quite another!

Understand you!

Suzie x

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Thanks Suzie, means a lot.

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Hi juneann

I totally understand you.. you get a reminder of it every day in some way. I feel like I’m fed up of moaning and because I’m quite open with my thoughts and feelings I try and keep it in and not burden others with it but I can’t. So I keep moaning.. however there are some good treatments out there that work brilliantly for some. I was on Cimzia for 5 years and it was the best relief I’ve had. Unfortunately had to stop due to allergies so now I, like you wonder where it’s all going to get to in 10 years time. All we can do is try and be positive and hope that they treat us with the ‘one’. xx Sarah ♥️

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Thank you for your reply, you seem to think like me and speak out like me, that"a comfort. X

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I'm the same! Thoughts with you! xx

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I haven't had it as long as you, just over 2 years and only diagnosed in November 2016 but echo every word you say. Mostly I try to keep quiet as people just don't get it and there's no cure for stupidity. I keep telling myself that in 10 years time I'll be skiing, horse riding and feeling amazing because they've found a fantastic cure. Hugs

J

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I absolutely get were you are coming from. I try to do something everyday, even getting out for a short while, but RD is never far from my mind. Stay strong.

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I have had RD for nearly 40 years. The improvements in treatments over that time have been amazing and I'm looking forward to things improving still further like targeted treatments and new therapies. Science doesn't stay still and things will get better - and there will be treatments which improve your condition. Possibly there will even be treatments that change our immune system!

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