is there anyone with RA who is ok?

peridotlouise

i search the internet everyday, to try and find someone who is not in pain, is working full time, who has the disease managed. is this possible??? can people who have RA mild stay mild? or does it inevitably get worse and worse?? everything i read, people have it aggressive.

resusjan

I really hope so, but I'm not holding my breath.

I was diagnosed less than a year ago, am on Methotrexate, Sulfasalazine, planequel and, so, far, am still working full time and relatively ok. I'm 42 so have got 20 years left till my mortgage is paid off and I retire. Hmmmmmm, scary stuff.

It would be so nice if someone came on saying "YES, I've had RA for years - its well controlled and I can still jump through hoops" But, I guess, if such a person exists they will be out getting on with life and won't have time to post on here!

stickywicket

'OK' is a very general, subjective term. I consider myself OK but many wouldn't. I gave up paid work to have my first son - I'd had RA for 9 years by then - and I don't think I could ever have gone back though I've done voluntary work most of the time since then. Unfortunately that doesn't bring in any money and our sons always had less of everything than their friends.

I think 'not in pain' is a pipe dream. The levels vary. I peaked in the years before my TKRs. It was never quite as bad after that. However, I'm sure that those who are able to just get on with their lives will be doing exactly that and not talking about arthritis, on the net or anywhere else.

To me, it's just a matter of changing what you can and then finding the good things about where you have to be.

williamlargs

Yes me lucky **** that I am.

Diagnosed 9 years ago aged 43. Previously to that I had been treated for an over active thyroid (yes there is a relationship it's another auto immune thing).

I was on sulph for several years which kept a lid on things. Had a couple of years drug free in agreement with my rheumy then a flare 2 years ago had me put on to meth. After 3/4 months I was more or less inflamation and pain free and have been ever since. I play 7 aside football every Friday night at 52 years of age and feel fine apart from odd stomach issues which I take omeprazole for.

I was on 20mg meth till last summer when they cut me to 15mg. I have an appointment this Friday and hope to be cut further.

I certainly don't want to come across as a 'gloater' or self centered 'git'. I am only answering the question as honestly as possible. If someone gets a boost from it great.

I wish everyone whos reads this post was as lucky as me. I am certainly not naive enought to think that this will always be the case for me but here's hopeing.

elnafinn

A friend of mine with RA was on a low dose of steroids for years and had so much energy, a full time job, then a part time one, charging across London a day or so a week to look after her mum, travelling London to Brighton to see her grandchild, active in her church, dashing off on holiday for a few days or a week or so, she made me tired just listening to all she did. This is until she reached 60, and since then unfortunately things have not been so good for her with other ailments being added to her RA. She has not always been ok though of course. She had it really tough when her children were small. It appears that the low dose of steroids "suited her". She did have to watch her weight but as her gp said, would you rather be a little overweight and well or the other way round? She chose to stay on the steroids.

Elna x

valval

hi i think most people who are controled are far to buisy living there lives to spend much time posting on arthritis sites so hard to find them i am always glad when i hear of some one in remision it what we all wish for good luck val

stickywicket

williamlargs wrote:

Yes me lucky **** that I am.

Diagnosed 9 years ago aged 43. Previously to that I had been treated for an over active thyroid (yes there is a relationship it's another auto immune thing).

I was on sulph for several years which kept a lid on things. Had a couple of years drug free in agreement with my rheumy then a flare 2 years ago had me put on to meth. After 3/4 months I was more or less inflamation and pain free and have been ever since. I play 7 aside football every Friday night at 52 years of age and feel fine apart from odd stomach issues which I take omeprazole for.

I was on 20mg meth till last summer when they cut me to 15mg. I have an appointment this Friday and hope to be cut further.

I certainly don't want to come across as a 'gloater' or self centered 'git'. I am only answering the question as honestly as possible. If someone gets a boost from it great.

I wish everyone whos reads this post was as lucky as me. I am certainly not naive enought to think that this will always be the case for me but here's hopeing.

Wow! You don't come across as a gloater at all and I'm so glad you took the trouble to answer because I, for one, find it inspiring that you can do so much after so long. Long may it continue.

7 a side footie every week would be remarkable for any 52 yr old. That's brilliant, williamlargs. You've put a smile on my face.

williamlargs

Thanks Sticky I'm glad I've made you smile.

Regards

DebraKelly

I was diagnosed 3 years ago, and its only the past 4 months that I haven't experienced any pain at all.

Although I am tired pretty much most of the time.

It does vary with different people, but I don't think everyone will any pain reflief all of the time.

tillytop

Hello Louise

I completely understand why you are searching so hard for something positive, and for some reassurance, but I think you are, maybe, in the process, tormenting yourself unneccesarily. The reason I say this is because you remind me of myself in the early days, desperately looking for definitive answers about how things were going to turn out for me. And having had RA now for nearly 16 years, I have to say that I think one of the hardest lessons for me was that there really are no answers. RA seems to be such a variable disease, both in its effect on a person hourly, daily, monthly, yearly etc and in the way it responds (or doesn't respond) to drugs. Also as you will have seen from the forum, everyone has different experiences and what helps one person, may be no help at all to someone else.

That doesn't mean that there is no hope though Louise - there are certainly people for whom things can be well managed, although as has already been said, these are the people we don't tend to hear about - which is why it was so good to hear how well WilliamLargs is doing (really pleased for you William).

And, for me, many years after my initial diagnosis (aggressive, erosive RA with a bad prognosis), I was lucky enough to have 5 virtually RA free years thanks to one of the newer drugs. And I was able to enjoy these years to the full, because the earlier drugs, although not keeping the RA as well controlled as I would have liked, had done a brilliant job of keeping joint damage to a minimum. As for work - I was able to continue to work up until about 4 years ago. It certainly wasn't easy for alot of that time but, ironically, it was actually a reaction to one of the drugs which meant I had to stop working, rather than the RA itself.

I know you are relatively new to all this - and I think it is very hard to cope with something when you don't really know what you are coping WITH if that makes sense. I know you have had trouble with the MTX but there are lots of other drug options out there and I very much hope that, in time, you will find a drug combination which suits you and that, as a result things will become more settled. In my experience that is when it becomes easier to cope.

Not sure if any of this is helpful Louise - but I am thinking of you.

Tillyxxx

jaja

Hi....everyone is really individual i would suspect...but it would be very interesting if a pattern did emerge.....i started with it in 1984...worked and brought up 3 boys untill 1994....then semi-retired ( i say semi as i still had the boys to bring up) then returned to voluntry work for 3 years 2000-2003...then it got the better of me im afraid...im not up to alot now but that is a good 26yrs since it started!.....

JAJA

peridotlouise

Hi everyone..

tillytop - you are spot on....i am desperately searching for reassurance and a glimmer of hope. i can't seem to stop being scared. i don't hear good things often about RA. And what scares me the most is not being able to work... i havent even STARTED my career!! i am in admin, and my new job i told my manager, and she looked at me absolutely horrified. she was like 'you're so young' and i got the impression she was terrified for me. so now i feel embaressed to start my new job, fearing shes judging me. i want to be a filmmaker, im starting acting lessons again next week as acting is my dream and i want to pursue it as acting, filmmaking, and writing is what i want, it's my passion and it's a big part of me as a person. take away my ability to work and i am nothing. i wish i was 40 and diagnosed. i actually feel jealous of older people who get a diagnosis as horrible as that sounds, so i feel guilt aswell.
i hear a lot of people stopping work after 5-10 years...which means if my RA progresses, i can be out of work before im even 30.
i am a mess.

im sorry for the posts i make on here...i feel like an annoyance, and i know people have it worse but im just unbelievable scared and i cant get out of the 'WHY ME' stage. All i think about, every single day, is why me...when i want an active career.

im so sorry.

sugarbuttie

I am 40 next year and I think / worry about the same things as you do. They reckon the first person to live to 150 years old has already been born. By that measure, I too am very young with a lot of years left. 20, 30 & 40 is still young so I don't think you would feel a lot different at 40.

Thinking of you xx

skezier

Hi :Louise,

**** some of the others have said the answer is yes to a point. I know it seems relentless when you first start out but it does get better in between flares and the remission can last a long time so hang in there.

With luck you will be ok and though mine isn't ra its pa and I have had it a long time and still work (be it with pain) so with luck and a bit of control you will be ok for a good time yet.

William is hope for you an a lot more who don't come in too often are dong ell as well. Cris x