hi can i ask a question and get an honest answer, are... - NRAS
hi can i ask a question and get an honest answer, are we doomed when we r told we have ra, or can we live a normal life on the right meds
Well I do okay, I really enjoy life but it's not quite normal & I'm desperate for the right meds that will at least keep things as they are now. Even better would be ideal!
I do not know the answer jaqi, I'd like to though - good question!
Luce xx
I would like the answer to that as well,sorry i can't add anything to what woolly said.xxx
I would certainly say we are not doomed, it might be be a challenging path but with the right meds, support and determination there is still a life to be lead 
No just keep fighting
Blimey I hope not! Still very early days for me, getting used to MTX and all the weird feelings I'm getting whilst taking it...such as is it the drug or in my head??? My Aunt's friend has had RA for twenty years and has coped, has trouble gardening now tho and another person I know of has changed from MTX tablets to injections and now feels much better but we are all different.
Good luck!
Maddie
Jeez Jaq sometimes i think we are and really do think what is the point of swallowing bottles of pills when it does bugger all, then with either blind optimism or drugged delirium I think that one day very soon they will find a cure. So i swing between the feeling of doom and positivity!!!!
I don't think we are doomed though with the diagnosis, if we all got fair and quick treatment, I reckon that most of us would be in a much better state of physical and mental health.
No. And Yes. Is the short answer to your question. Everyone is different. I got hit by RA almost overnight, it was as fast as that. Luckily I got diagnosed fast and they threw everything at it. I was in a bad way for about 6 months untill the drugs started to work, now 3 yrs later, whilst I can never do some things I used to do, I am in remmision and apart from the odd flare and fatigue, I am still working, travelling, mild exercising. So maybe I was lucky? Dunno. But I keep fighting and taking the tablets.
onwards and upwards x
Well a year and a half later my meds still not sorted and working my ra spreading rather rapidly round my joints so i'm a bit doom & gloom one minute then try to be positive the next.
I do hope once my meds are sorted i will have a relatively normal life.
Im not as bad as others on here as i do still work, though sometimes its just sheer bloody grit and determination that gets me there as im determined i wont let ra beat me in the long run.
Normal? Hmmm, not quite sure whether I am or not really. But certainly not doomed! I'm not the same as I was before RA appeared, but I can live a fairly normal life and enjoy things and day to day it's ok or even more than ok so I guess could be called normal. And I might get howls of protest from others, but in some ways I'm better than I was before RA as now much calmer person, not so impatient and more interested in little things. I never used to sit still, and rushed around at 100 miles an hour - which must have driven people nuts! But the first year or so were rough, and adjusting was hard too especially as I used to hate exercise and would eat rubbish, and drink lots. So it's a lot to deal with, but there is light at the end of the tunnel so hang on in there. Polly
Polly....
What a positive reply... I know it's not my question but you've made me feel better!
I'm with Polly. In fact I think I might actually BE Polly! My life is very different but the changes have not been entirely bad. The disease has made me more grateful for the things I can do, and more determined to get on and do the things I want to do, just in case I can't do them later on. It's certainly got me out of the rut I was in, even though that has been a difficult and emotionally painful process, and isn't quite over yet. I have learned new things, met new people, and thought in new ways. I'm not over yet.
Love, Dotty xx
Ohhhhh, scary....RA clones take over the world! Px
I agree with you Dotty and Polly, I used to run around like a crazy thing. My daughter thinks I ran around so much that is why I have worn my joints out!!! I am a lot lot slower now but I do lots of reading (which I never had time to do before) and as Polly said it has been a difficult and emotionally painful time but other things do compensate. It is great that we all have one another to talk to. Each day is different. Keep fighting. x
Exact same question I asked my gp and rheumy when I was diagnosed a year ago. Medics all said once we get ur meds right u can lead a "normal" life. It will never b as it was b4 as I was extremely active, but im learning to enjoy "me time" that ra needs.
But we cant ever give up as its our fighting spirit that helps us discover our new identities and appreciate our good days.
Good luck and gentle hugs to all the supportive caring people out there reading this. Onwards and upwards.
For me personally - I've still not found a treatment that works, I can't see a bright future, no money or any way to get it now, shortened life expectancy, gradual joint damage. I've lost hope in finding a magic miracle drug. I'm still waiting for results from lots of tests to find out what on earth the Humira did to me and I only took it for two months! I feel pretty doomed.
I agree with Dotty & Polly but I guess it depends on age,how bad you have it,the treatment you receive & money (as in if you can afford to cut your hours down,or give up altogether). I used to rush round like a headless fly (as my daughter-in-law said once,& hasn't been allowed to forget it) but I can't now. For some unknown reason I still haven't told my family they think I can't do things anymore because of a back injury,it' somehow makes me less of a victim maybe. I don't feel doomed at all, it's just the way the cookie crumbled. As for life expectancy I'm not sure I want to live to a ripe old age. I live for today as much as I can & it's a pretty good life. Wishing you all well x
I don't think we are doomed but you need to fight this disease and not let it take over you.
You need to think positive even when its times are hard and you are in a lot of pain.
I personally know that I am not the same person I was 5 years ago and don't take anything for granted now.
I was ignorant to RA before being diagnosed as like most people are.
My older brother has suffered from Lupus for years and again I did not bother even to look it up so only now do I understand how it must have been for him all these years.
I am still working full time and I was diagnosed 5 years ago and yes its been a struggle but I am fighting this with the help of the medications.
There have been times when I have stayed off sick as the RA has been bad.
I know there are different strains of this disease and some people are hit harder than others but I know I am not giving in to it no matter what happens.
Mary
No I don't think you are/we are doomed to be diagnosed with RA. It did devastate me to find how much my mobility was first affected, but then I found I got more cerebral and thought more about things. Ways round things. You become very clever and adapt. I was an athlete and a keen sports woman so it was hard, especially as my parnter could carry on doing all these things and I couldn't. I think it is all about compromise and adaptation. I have had some great spells during the last 17 years but have always resisted a biologic since I was offered early on when they first came out Too scared. I had early joint damage from the start before diagnosis but it hasn't stopped me doing many things. At the moment I am about to change to the biologic, and steroid injections have been keeping me going so I am rather compromised.
During the last seven years I have done a part time BA and MA - produced the most work and was the best attendee so I don't think RA was allowed to compromise me there! It does tire you out when you try and do many things, but you get clever and choose what to do ... Be selective. Try not to wear yourself out too much. As Craw just said above you need to fight it. I say you need to be in control of it rather than it controlling you. At the mo mine is controlling me which is why I am going for a biologic.
Dog rose , don't lose hope. There will be a drug or combi of which will work for you. It is just awful when people have to wait so long to find it. Hope for better days soon. I have been told I am at the worse end of the scale for RA and they haven't given up on me and hope that Enbrel or whatever biologic I choose can make a huge difference.
Like Dotty says we think in new ways and I agree with Helix as I have become more patient since I am slower myself!
I am writing this in a period of very bad mobility and pain and I can see reasons to be optimistic. Hope you can too, Jaqi.
Love Neonkity xx
Always sad to see somebody feeling 'doomed' and defeated by this disease. Perhaps you are still wading thru' the 'acceptance' stage. Everyone's experience is so different. We have to learn so much so quickly - and none of it by choice.
I hope you develop a good relationship with the hospital team & your GP, manage to educate those around you and find the support you need to cope with this journey.
Have you requested all the relevant info from the NRAS site?
You can read here how we all struggle but somehow manage to cope & find the good things in life.
Be strong, find your voice and be kind to yourself x
Hi,
Yes we can live a normal life even with RA!! It obviously depends on the individual situation but the new medication (i.e. biologics) and the range of DMARDs available certainly make it possible to live normally. What I do have to say is that in the beginning it does take a while for the meds to work properly (for some DMARDs up to 4 months!) and it can take quite some time until your rheumy has found the right medication/combination treatment for you. With me it took about a year and that year was not a lot of fun - I don't know what i would have done without regular steroid injections!! Now, apart from daily pill-popping, monthly injections and blood tests, I can honestly say I feel like I did before I was diagnosed. Only thing I sometimes struggle with is side effects from medication. i.e. my hair is thinning a bit at the moment and I have lost my appetite a long time ago lol.
Don't give up hope, there is a tough trial-and-error period at the beginning until you've found the treatment that is right for you but nowadays the prospects for someone with RA are so much better than even a few decades ago.
Hope this helps!!
LOve, Christine xx
I would just like to say what great positive message some of you have all sent, i have only had Ra for 8 months and at the moment i am struggling, i suppose the main thing that hit me was seeing my brother having to give up work 17 years ago and now being in a wheel chair, i have always been active hard working so not being able to work for the last 8 month you can image, i have had some bad days, but i have a good medical team behind me; and with all the positive message i get from this site and the great friends i have made and special one which i would never of made if i had never had RA, so i am determined and i am going to do my best to make sure that this RA doesn't affect me to much in my life, a great question and some great answers, Take Care xxxx
Hi i would like to say everyone is different ive had ra since i was a baby and im 21 soon im not coping at the moment but im on mxt and i get but sick and things on them but i survived on golden injections until last year and i got diagnosed with fibro so just take things a step at a time my mum has to help me with things coz i just can't do it at the moment i even have to use a scooter to go round tescos now but see how u r and just go with it like the saying says if it doesn't kill u it makes u stronger so if u need a moan and a groan tht is what we are all here for much love and hugs tara xxxx
Hi, please don't feel doomed, although I've had many moments feeling the same. I've had 2 years where they've been trying to sort out my meds. It takes a long time. Please don't despair. I've recently had a new treatment which seems to have done wonders for my RA. Hugs Sue xxxx
Hi, I certainly dont feel doomed. It is for life, but that means we have loads of time to get used to it and figure out how to control it. I've had it for 13 years this month - oooh, happy anniversary to me! Definitely life is different and adjustments had to be made but once I got to grips with accepting that i couldnt do everything I always did, life was easier - concentrate on what you CAN do and not what you can't. I've been told that so much by my husband and friends and its finally sunk in!
I am on mtx which seems to suit me and controls the disease quite well. I keep as active as I can; do exercises that I can do, especially walking and my Wii Fit. I eat healthily, which we should all do anyway.
yes, you will feel depressed now and then and I have days when i just sit and cry a lot, but I let it come and let it go and then get up and do something that makes me feel useful, even if it's a load of laundry or making some soup - anything that my body can manage that particular day and then I dont feel so useless.
Stay positive, it makes a difference. As Tara says, what doesnt kill you............... and this website is great to exchange moans, tips, hints and good news as well!
Lynn x
I think my problem is all my other problems! I have huge debts from doing a degree in my early 40s after battling severe social phobia all my life, I had the silly idea I might be able to get a good job and actually have nice things (like clothes without holes in them) and not have to worry about paying the rent and bills. Then I got RA before I even had a chance to find a decent job, so I still have the bills and debts and no way to pay them off. And that is before you get to the being so in pain I can't sleep or look after myself properly. And being 300 miles from my mother, children and Grandchildren and not being able to afford to visit them at all.
I really can't see what I can be positive about right now 
hi my mum got ra in her 30s but sadly now isnt with us anymore,my brother also got it in his 30s.I at least got to 49 and have had it for 6 yrs it was bad at first till they diagnosed it with meds it calmed it down,I have been off work since january with a severe flare up i think due to a viral infection,about a month ago it was so severe i couldnt get out of the chair and was sat all day while my partner came home without nothing to eat or drink,i had a bottle of water which i tried to open wedged between my knees and tried to open with my teeth,i cried most of the day and sobbed when my partner came home and i felt that run down if i could have got the top off some pills i would have taken the lot,i,m still off work and have good days and bad,i,m very bored,i want to go back to work,but have been told theres no light duties,and i cant go back untill i,m fit for work,i work in a dementia care home,and its very hard work,i dont think i will ever be able to go back to that job,but dont know how to better my life with a suitable job then, can any one help with any suggestions,and yes i feel its all doom for me,ive never been out of work,but what can i do......julie
I haven't read everything that people have responded - but my take is that it's important not to let RA get central to your life! You're still 95% (or more) the person you were before you got it, so just deal with it as best you can and keep it to the side. I don't know if mine is going to get a lot worse (it's a year in and has progressed a bit, so I suspect it will), but I am absolutely determined to get on with anything and everything else that I can, and let the disease do its worst without me getting into a minute by minute dialogue with it..
I know this will sound lackadaisical to those who are really really suffering, but it worked for me when I had cancer years ago, and I am not going to become a disease with a person attached, I'm hoping to stay a person with a disease attached!
