Hi all. New here. Doc says I've almost definitely got RA. Just waiting on bloods and xray to confirm. I'm 42 and can get through days, although I get various pains throughout the day and am able to do less than I could 6 months ago. Is there a usual standard of progression? Will I be at this level for a few years, or can I expect it to get worse soon?
My wife has blood cancer and a life expectancy of about 10 more years. She is capable now, but I'm hoping I'll still be able to take care of her when the time comes
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BakerTom
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Welcome BakerTom, let’s hope you don’t have RA but, if you do, unfortunately there is not a standard of progression. It affects everyone differently so I wouldn’t start Googling it as you’re bound to get all the nightmare stories and not the good ones of people who have found the meds that work for them and are carrying on with their life ( the same goes for this group 😊) Do ask any questions you have and once you have a diagnosis ( or not) then there are useful NRAS publications on their website.
I’m really sorry to hear about your wife, fingers crossed you’re able to help her out and create lots more memories together.
Hello! You will be given drugs to slow the progression of the disease and ease any symptoms and maybe go into remission from time to time. Why don’t you ring the NRAS helpline for a chat?
Great forum and advice and one size does not fit all so what happened medically or body wise might not be the same for you as we all react so differently.
Stress management huge especially with your wife’s diagnosis but NRAS and the Wren Project out there for support or NRAS a rant etc!
Plus can rant on here anytime we have all been there 🥰
i’ve been diagnosed 13 years now. The first year was shit, but then I had 8 year in remission once I had stabilised on drugs where I was 95% normal. And the last 4 a bit more up and down, but generally not too awful and if I’m careful about looking after myself I do mostly what I want. Well up to 10pm!! ( Sleep is important)
With the modern drugs there is absokutely no reason why you can’t continue to live a normal life. And I hope new treatments appear for your wife too!
Some people are unlucky and have a really unreaponsive form of the disease. But try to be positive, and look after yourself as that makes a difference.
I was diagnosed over 25 years ago and remission is the aim. So yes you might have RA but if the medications work then you’ll have a normal life for many many years to come. RA is a journey, and I’m so sorry to read about your wife but you can be hopeful that you’ll be there and able to help her as you want to. Because of the medications I have enjoyed remission for a long time at the moment a bit of a blip but it’ll be sorted, these things do take time though. So although I hope you don’t have RA it really isn’t so bad and can be controlled well. I wish you all the best and do read the NRAS website which has lots of information on it.
We are all different and are affected by RA in many different ways. My own experience is 21 years of RA and although I have had some very difficult times during those years, I am now in remission due to medication, which has to continue as I deteriorate rapidly without it. I am the best I have ever been and can do most things with minor discomfort thanks to my Rheumatologist and team, so there is light at the end of the tunnel. Try not to worry. Be positive and keep taking the tablets. Good luck.
sorry to hear that BakerTom, I was diagnosed with RA and have been medicated on methotrexate since diagnosis and I’ve been incredibly luck the meds suit me and I have have very few flare ups throughout the past 6yrs . With medication I lead a normal life. There are lots of different meds if the first doesn’t suit keep trying and good luck 😊
Hi Baker TomIf you do get a RA diagnosis, you'll at least know the general parameters.
I was fortunate...my rheumatologist said 'we hit it hard' and put me on prednisolone for a short term fix and methotrexate for the long term. The pred. calmed things down til the mtx had time to kick in, when the pred was tapered to zero.
My worst symptoms went within the first few weeks, and nearly 5 years since diagnosis I'm in remission and still on mtx.
Other things (mostly osteoarthritis) slow me down, but I'm 73 so not surprising.
We are all different and RA can be unpredictable, but there's the possibility that you may get diagnosis and treatment, and in a few months be in a better place than now. And there's lots of different medications, so if the first one/s don't work you move onto the next.
I hope your wife is one of the 'lucky' ones who exceeds her prognosis.
This is a great forum, and also NRAs, and members here, are a good source of support
What you need is ultrasounds as xrays inly show bone erosion which may not be there but the ultrasounds show up inflammation. Sorry to hear about your wife.
Hi sorry to hear about your wife. I was about 50 when diagnosed now 63 and still working and hope to be till 66. Have tried a couple of medications one that really didn't suit me was methotrexate but now on sulphazalizine and benepali the combination seems to suit me, have occasional flares actually still not sure what triggers them but continue on you will be fine. Honestly medications are so much better than previously and hope for that good quality of life for a long time.
welcome Tom, golly you do have a lot going on, but I’m totally with others here once you get a clear diagnosis of which Autoimmune Disease, there are quite a few that are similar symptoms you will start treatment & hopefully get the benefit from them. There are several & sometimes it’s just takes a little time to find the right one & hopefully get back to feeling your normal self. Great you joined as others have said it’s a great learning tool even for many of us who have been diagnosed for several years. Hope you get your results soon & can start treat ASAP.. all the best 👍
Best place to look is the NRAS website for sensible accurate information.
Ask any questions here but you will get a variety of answers because Rheumatoid Disease is really a number of different autoimmune conditions which tend to affect the joints and also other parts of the body. Currently, treatment is applied on a trial and error basis, although work to identify which part(s) of your immune system has gone wrong are in trial.
Generally, though, I would say that once you find a treatment that works you should get back to more or less 'normal' function. Keep moving, eat a varied and low-processed diet with plenty of fruit and vegetables, and don't smoke!
I was 47 when diagnosed and I'm 71 so don't worry, once the consultant gets you sorted with meds I'm sure you will be fine, I lost my wife to cancer 18 months ago, I looked after her and all her needs and nursing,un til she passed away, so stick to your meds take them on time and I'm sure you will be fine.
hi and welcolm.Believe me this chat room is miracle!Post as often as you like,the more the better.I have had RA for 23 years now and still function really well,am on meds now that keep me pretty pain free and well able to be independent,still able to do garden,decorate,etc etc although nearly 80.There are so many brilliant meds out there now,more than when I was first diagnosed,for which I have reason to be grateful.I am posting really as my son who is 48 has developed pains in his hands and feet,and is due to start on the blood test and diagnosis journey,same as you.As RA can be hereditary and his dad has gout,we could have a problem.He lays the cables for BT at nights,loves fishing and playing club cricket,so we need a diagnosis asap to start treatment to prevent it escalating if needed.At least,it is good to know about the numerous drugs on offer now,which enable you to have an excellent quality of life.I know it is easy to say,but try not to stress if you can,as this does not help with RA.Keep in touch with us when you can,and you will get lots of good advice and help from others who have been there.
I am so very sorry to hear about your wife,it is very sad indeed.I am sure you will be able to care and support her in the days ahead.
Hi BakerTom after all the tests and diagnosis, treatment will be started, consultants diagnose and the specialist nurse is responsible for your care plan. Try to read the info they give as best you can so you can (write down) ask the nurse questions. Discuss your concern about caring for your wife in future, hopefully she keeps well.
The first year is a bit suck it and see with treatments, don't be disheartened if the first thing doesn't work, lots of options. It takes the body a bit of time to get used to whatever treatment they decide so first year is a bit of a roller coaster. If you get flares and in pain call the advice line to get it under control asap.
Lots of us have this condition but it effects us differently as individuals so no definitive outcome as such. I was diagnosed 11 years ago I'm in what they call remission flare free, doesn't mean you stop treatment.
Ones round you will not get what pain your in or how fatigued you get.
Thanks. I just got my bloods back and says all normal. Perhaps my joints are all shocked physically, well see what doc says after xrays later this week
HI Tom, very sorry to hear about your situation. From my own experience and others I know with RA, plus what I've read on this forum, there is a huge variety in people's experience of RA. I've had it 26 years now. It wasn't diagnosed for 3 years, but once I was on the long terms drug/s I did have ups & downs (plus some chronic side effects), but on the whole could carry on as normal in a very physical job. It was only when drugs stopped working in 2020/21 for some reason that I've noticeably gone downhill. Happy to say more about things if you ever need to know. Good luck and to your wife too X
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