Okay, I know that I came here said "hi" and then left. To tell you the truth I am a bit scared. I came and read that a lot of people have had some kind of surgery due to the RA? Is this a fact of RA? This makes me very nervous! See, my RA is very aggressive. There isn't a day that goes by that I don't feel it even with my meds. Right now my feet and my hands hurt a lot, and we have increased my med, so we will see what happens. Please tell me, is the hand, hip and knee and other surgeries just a fact of RA? My Dr has not said anything to me about all this!
Ok, I don't know this for a fact, but I don't think it's a foregone conclusion that if you have RA, you will have to have something replaced. Many of the drugs nowadays prevent damage to joints, and many of the folks you read about having the surgery got RA too early to benefit from the biologic drugs that us newbies get. I know it's very easy to let your mind worry, but please try not to. It won't change the future, and it steals away the joy of today
Linda Dear Kylie, welcome (back) to the board. I don't know much about surgery due to RA to be honest. I am of the belief that there is a very large percentage of people with RA who do very well and do not live in pain or discomfort. Since they are doing well and living active lives, they are not on RA message boards, but working, skiing, hiking, playing.... We are fortunate here though that we have many people who are doing well with their RA, yet choose to come here to help support others who are really struggling. To me, that is a gift. I remember several years ago going through a bad bout with ulcerative colitis, posted on a message forum and as soon as I was healthier, I ditched them
I had similar thoughts when I went to a message forum on how to withdraw from a particular prescription drug. The board was full of horror stories about how terrible it was to withdrawal. What you didn't see was all the people who tapered down gradually and had little trouble withdrawing, thus no need to post on a forum. I appreciate everyone on this forum. This board has a wonderful mix of men and women. We cover the range from newly diagnosed to those with Juvenile RA. Some are doing very well with little damage, others are disabled and struggle daily. I've grown fond of my friends here and when I recover, I have no plans to ditch ya'll :) Love and hugs, juliah Nevermind Welcome to AI kylie. I've had RA for more than 13 years now. I was fortunate in the fact that I was dx'ed early and started on a good treatment plan early. Although my x-rays do show some changes consistant with RA they are very minimal considering the number of years I've lived with this. I've managed very well just as many do. I can't say that some sort of surgery isn't in my future....none of us can. I do know though that just because you have RA does not mean that you will definately have to have any sort of joint replacement in your future. I know of at least three people that have had hip and knee replacements and those replacements were not as a result of RA but due to OA. I know that doesn't really help that much.....but it's kind of good to know that many of the joint replacements you hear about aren't even related to RA. Glad you're here. Don't let fear keep you away. If anything you'll likely get to know lots of great folks that are proving that you can lead a happy, successful life even with RA. It doesn't mean life is over. Different maybe.....but certainly not over. Keep your chin up. Thank you ladies for your awesome replies! I am a worrier by nature, I have read other messages too, just that i have to think of the poor people who are struggling more! I am really hoping to learn from this board and I hope I didn't offend anyone! Linda, I like what you said: "It won't change the future, and it steals away the joy of today " thank you for that!! Everyone is different. If it makes you feel any better, I've had it since I was about 18 months old, I'm now almost 24 and I've *never* had a surgery due to RA. I've gone from having moderate to mild RA as well. Everything can change! Just be pro-active, it's the best thing you can do for yourself. Hi Kylie and welcome - I don't think surgeries are a foregone conclusion. There are people here using all kinds of different ways to combat this RA. Don't be frightened and just ask questions and be open to learning! The knowledge you gain will help you determine your path and future. Hugs, Pip Kylie, Scarey, isn't it? LEV Kylie - it can be scary at times, but it doesn't HAVE to be. Arm yourself with knowledge and the love and understanding of people who live with RA too, and you can walk miles. LOTS of people do that, and they do it HERE everyday. [QUOTE=arriscolwell]
Everyone is different. If it makes you feel any better, I've had it since I was about 18 months old, I'm now almost 24 and I've *never* had a surgery due to RA. I've gone from having moderate to mild RA as well. Everything can change! Just be pro-active, it's the best thing you can do for yourself. [/QUOTE] since 18 months? Oh that makes me so sad! I have a an almost four year old and an almost two year old and I would just die if my babies got it! That is just.....heart breaking!! Thanks for the input! Thank you all for making me feel better, really you have helped a lot!!! WElcome! I had 5 surgeries to my hands before being dx, actually it was the surgeries that tipped the hand surgeon off that I had RA. I have cystic RA which is a rare kind and very painful like the others. It does not necessarily mean that youwill have surgery. Take each day as it comes, smell the roses aloong the way and if you do not trust your rheumatologist find one that you do trust. Talk to him, ask many questions and insist on answers. Be an active patient and work with your rheumatologist on finding a reasonable med that works for you which means gaining a "tolerable existance". Jode Dear Kylie As others have said - please do not worry about surgery - it's not a foregone conculsion. I have had widespread R/A since 1995 and it hit me so hard at first - pretty much stopped me in my tracks for the first year, and as it was unconfirmed (always negative blood results for Rheumatoid and only the slightest hint of evidence from the body/bone scans which couldn't prove arthritis) for almost a year the damage was being done early. Until the docs could see it was definitely R.A. they did not put me on any disease modifier drugs. Just NSAIDs. What I am saying, Kylie, is that is that despite several joints giving me limited mobility due to fusion and stiffness, I still haven't had surgery 12 years on. I am (I am told) a very youthful looking 47 (the ladies keep their young faces in our family!!) I kept myself mobile and attended phsysio and hydro even though getting there and back was a workout in itself! I was all set for elbow surgery and then suddenly .. I found my elbow having much more range of movement and my consultant said I should not have the surgery as I no longer had the stiff arm that would not bend and the agonising pain. The xray still showed the fusion but I guess the inflammatory process had finished and just left the bone damage. I don't know why that happened and neither do my docs. I do know the albow is fused, but I still have enough mobility and no pain (I have just completed a Bachelors Degree in Fine Art so that's proof for you! It was very hard to do but I cna be a determined, stubborn soul at times, but have a soft centre!) So, I am saying too, it is not always a foregone conclusion that pain and and damage can always mean surgery. However, if surgery was the only option then I would do it. As the other dear folks have said - those who get their R.A. diagnosed and treated quicker thn a scenario like my own onset of R.A., will have much better chances of better mobility/less pain, etc. BTW, I have medium-severe R.A. and Osteo and recent spells of many flares (due to failed response to MTXtablets - I am now starting the injections). Sometimes (often for me at the moment!) it gets a real struggle but I believe in positive thinking and relaxation .. and a daily laugh or two!! I always like to think of myself as pro-active about my R.A. and agree totally with Jode's and Katie's comments directly above. A young Rheumy I once saw said he wanted to talk about my disability and I told him I would much rather talk about my ABILITY. I hope you will feel that too and find what works for you. Wishing you luck and sending good thoughts to you, Kylie. Good thoughts and to you all. Joolie
Just try and take one day at a time, sweetie, you will kill yourself if you worry about everything you possibly could all at the one time. Just deal with the next bit that you have to today.
It's okay to be scared. I was scared too when I first came here. I lurked for a year not saying anything.
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