worried about the future

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New Member

Date Joined Jun 2010
Total Posts : 2
   Posted 6/5/2010 8:04 PM (GMT -7)   
hi guys, im Julie from OZ. i have had juvenile rheumatoid since i was 10, i am now 33. its done a fair bit of damage to my body over the yeas, and i worry about what it going to keep doing. i have been on almost everything, i now take celebrx, pred 5mg, and enbrel injections(these have helped the most). i had my first hip replacement 5 years ago and have been told i will need other joint replacements in years to come. just wondering if there are any other long time suffers out there?

Regular Member

Date Joined May 2010
Total Posts : 355
   Posted 6/5/2010 11:36 PM (GMT -7)   
Hi Julie

I'm also from Oz. Sorry to hear you are in so much pain. I have RA but not as bad as you my sweet girl. I have been diagnosed for 4 years now and it mostly affects my shoulders, arms and hands .....oh boy those hands, some days the pain is so intense that I wish I could just chop them off and get new ones. I am on methetrexate, pred and celebrex as welll as occasional painkillers. I hate being on those meds but can't go without them now as the pain is pretty bad.

I have had both knees replaced but that was before the RA, that wasn't much fun but had to be done. You were so young to have had a hip replacement, obviously it was necessary but wow that is very young. I am so sorry for you.

I am sure that others will respond as there are plenty of us out there, so hang in there and I hope you are feeling better tomorrow.

New Member

Date Joined Jun 2010
Total Posts : 2
   Posted 6/6/2010 3:09 AM (GMT -7)   
thanks Harrington49, i totally know what you mean about wanting to chop body parts off!! i think the part that sucks the most is hands, you dont know how much you use them till there so swollen you can put your socks on!
My Enbrel injections have been like god sends, they are keeping the swelling under control, but things can change very quickly, as i have learnt over the last 23 years! i have been on them for 4 years now, and for the first time in my life i have been able to have a job, all though its only part time, i makes me feel normal.
i have been on pred for 21 years, an it really stuffs up your immune system, but controls the pain.

i hope you dont have to have anymore replacements as they are not fun and takes alot of time to get back to normal.

my dad always told me "there are always people worse off" and i try to keep that in mind, although at times i think, i dont care about others at the moment!!
thanks again for your response

Regular Member

Date Joined May 2005
Total Posts : 280
   Posted 6/6/2010 5:59 AM (GMT -7)   
Hi. I was just diagnosed, so I don't have much experience. I wanted to say hi and send you a hug and some prayers. God bless.
Adopt a retired racing greyhound

Veteran Member

Date Joined May 2010
Total Posts : 594
   Posted 6/6/2010 11:52 AM (GMT -7)   
Hi Julzzz and welcome! So sorry for your pain and for the length of time you have suffered! I am not yet dx'ed with RA, but that is what we are turning towards! I have only been through one flare and....wow...I am scared to death of the next one! I have had chronic back pain for 3 years but was not in anyway prepared for what happened to me!! Anyway, just wanted to say hello and send gentle hugs to you! Keep coming here, I am pretty new but here also and have found some wonderful new friends here! Take care of you!


Veteran Member

Date Joined Sep 2008
Total Posts : 1670
   Posted 6/8/2010 5:28 PM (GMT -7)   
Hi Julie, Also a fellow OZer, I've had RA for 31/2 years and been on the downhill slide ever since, currently on orencia, methotrexate, mobic, prednisone, and tramadol for pain. My joint damage has been kept to a minimum because I was lucky enough to get this disease when current thinking is to treat it aggressively.

Still a horrible disease though and I constantly fight depression and worry how bad its going to get, how long a med will work for me and whats next? Whenever I think it can't get worse it does!

So saying all that, I'm trying some alternatives, hydro therapy is really good, accupuncture I'm not sure of, having a support group really helps. Talking here really helps, like your Dad says keeping it in perspective helps but like you said, it can be hard when you're in constant pain.

Hope some of this echoes for you, I'm struggling on myself, waiting for something to happen, trying to concentrate on what I can do. Goodluck and please keep ranting here, golitho
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