I was just wondering how long each of you on this board have had RA? Also has it gotten better or worse? When was it at its worst? If any, what damage has RA done to you over the time that you have had it?
Thanks in advance to all that answer.
Lori I do not think I really count, but I will answer your question. I had JRA and now probably considered RA because of my age. I was diagnoised when I was 18 months old. So that would make it 26 years of having it with a few remissions which total about 8 years of almost symptom free of RA. Mine got worse with each child I had. Got my worse after having my son. I have deformities, but not really bad ones like you see on the internet. Most of my deformities were from when I was a kid, and when I was without insurance for 6 months and only on 5mg of pred. Most of my deformities are in my fingers/hands and feet and ankles. Well, visible ones. I do not know if I have any others, probably do, I just would like to remain oblivious to them. You know the old saying "What you don't know, don't hurt ya."
It was at it's worst when I was 3/4/5/6, 9/10/11/12, and now 21/22/23/24. The first round (3,4,5,6) is when the vast majority of my damage was done. Stunted growth of my lower jaw, my wrists, and made my ankles really weak. They put me in splints every night, to try to keep my knees and wrists from squishing up. It worked pretty well, my left wrist still has limited ROM and my right knee will never fully straighten, but that's really a small price to pay, I think. The second round was more of the fatigue and generally not feeling well kind of flare. It's when I got strep CONSTANTLY and the flu, bronchitis and pneumonia. (at the same time!) I would swell a lot, but didn't get a lot of damage, thankfully. At 21 I developed a bakers cyst behind my right knee, and that was the start of this weird flare. I seem to go up and down up and down. So far, I haven't had any x-rays so I don't know what kind of damage I've gotten this time around. Sometimes I feel like there might be a lot, and others I think I may have skated by. My next appt is on the 28th, my RD may ask for x-rays this time. We'll see! I only think this most recent flare is my worst, in the way that I'm an adult now and I'm trying to live my own life. Much harder than being a 4 year old with wonderful parents to care for you! I didn't know any different kind of life at 4yrs old, and mom and dad never let on that anything was "wrong" we just did what we had to do. So as bad as it was, I never really "got it". Now, I "get it" lemmie tell ya. LOL My first flare ever began last February 4. It lasted almost four months. It was the most horrible chunk of time in my whole life, I didn't realize till then how painful pain can be. I really didn't know it could be so bad. Anyway, during those months I was dx'd and began meds, first MTX then later Enbrel. The two work very well together in me and I must say that it's gotten much much better. My xrays showed no joint damage last winter, so I will assume that that hasn't changed since my RA was caught so early. Wow Joonie and Katie...you have basically had it your entire lives..I can't imagine. Do you ever get scared thinking of the future or are you past that? I'm scared of my future and I've only had it for a little over a year. I'm not sure if you ever overcome that... Linncn- glad to hear that you are doing so well. My RD told me that if you have to get RA now is a good time due to the newer drugs that are out...I guess that was supposed to make me feel better. Sometimes. Depends on how the ole RA is progressing with meds and all. But before it got to the worse point... I did not see it as affecting my future. but when it had took so much away from me at once and REALLY had to depend on others to help me to just do the easiest of tasks, then that is when I started thinking about "What If". I went my whole life adapting, and it taking one thing away from me at a time, which is not so bad, but when you finally have to give up things you should be able to do -- examples: taking a bath in a tub and getting out by yourself, or getting up outta the floor in your already adapted way and still cannot get outta the floor.-- it really messes with you mentally. And the more it takes away from you... the more your future looks a little dim, until you get on the right meds and then you realize you are walking without a stiff straight leg and standing upright a little better. Yep... then you realize... who cares if I cannot take a bath in a tub or if you need help getting outta the floor. Ok the last one is part of one of my greatest fears... because I am afraid I will fall at some point in time, when no one is home, except 3 year old son and then I would be stuck in the floor for hours and hours before someone comes home. I cannot crawl, because of my knees being so tender and just no way to crawl. And cannot grab anything to get up because of the lack of grip in my hands. So if I fall while no one but me and son is home... I am SOL. Yeah... we do not even have a cordless phone for son to fetch for me to call anyone. We had one, but it got lost for months... so we are back to using real phones that have cords Not really. If I do, it doesn't last long. It's like...........you're born with brown hair. You're born with brown eyes. You're born with JRA. When it's all ya know, it's all ya know!
I found out 3 years ago that i had RA, but i was told that the problems have been here for years as a form of Jr. RA. It was always painful to stand at jobs like burger king as a kid etc. but i thought all people hurt since i was hurting basicly since birth. I didn't get pain that i couldn't handle until 3 years ago. At the time 3 years ago, i had large polyps in my uterus i was waiting to have removed and at the same time hurricane Katrina came and hit New Orleans (45min away) so the troubles there stressed me out horribly, they think those two things started my horrible flair up. I have had a horrible problem with panic attacks ever since. I don't worry about the future anymore. I live for today. If i don't, it think it will kill me. I now know I have had it most of my life, since contracting scarlet fever (strep) at age 3. I am now 51. I had a bad accident in 2001 which triggered a bizarre series of events (ending up with three surgeries in 3 years) and it took until 2006 for anyone to believe me, despite having blood work show up (not RA) that was indicative of a serious health problem. I did the typical MTX/predisone/folic acid trip for a year with the only change being the creepy feeling that my body was eating itself up from the inside stopping. The pain never went away and I was still feeling sick and weak. I started AP therapy about five months ago now, and have weaned off the MTX (the predisone was stopped after 5 months, and I now have osteoporosis) and the plaquenil (prescribed for severe leg cramps, not RA), and am down to my synthroid and antibiotics, plus as needed pain meds. I feel great. Cathy Wow, this is very enlightening. I don't qualify because I don't have true RA, just a relative that's undefined. Reading these posts puts me in awe of those who've had to deal with so much at such a young age and carry on so well and with very little self-pity. Bless your hearts, you're amazing.
Thanks for all your replies. I'm suprised at how long some of you have had to deal with this crappy disease. (to put it mildly) Lori I've had it for 14 years. Over the years I've gone from one DMARD to the next increasing the dose.....and changing all together to stay ahead of problems. I've responded well to the majority of my chosen treatments; at least for a while. I started MTX about 5 years ago and also spent 2 years on Humira. MTX has definately been the most effective treatment over the years. I still continue to use it at it's highest dose to this day. MTX has been around a very long time. Many here have been on it 10, 12....15 years or more. It's used to treat cancer in much higher doses; but don't let that scare you. lets see..23 1/2 years. I've had 7 seperate major joints replaced and have severe damage in the rest. The good news is that other than crummy joints I'm pretty healthy I forgot to mention the damage part lol. So far (knock on wood) my knees still have no damage. Might be that i was a milk-a-holic for years. But, since the big diagnosis and pain in the last 3 years, i now have a fully functional finger, but the knuckle is square. My left wrist no longer bends backwards either. I did have odd swelling with RA and milk allergy combo in the past few years that caused deformed shins. I now have lumpy shapes right under where the knees are on my calves. But that's all. I had bad allergy attacks to mtx (probably has milk in the pill) and other drugs so it has taken a long time to find something that works on me. But damage did come fast.
Im not sure how to describe how it has progressed...on one hand its definetly worse because no meds have been helping me verses when i was younger and nsaids were all i needed. I remember though when i was younger being pushed in a wheelchair or stroller when we went shopping and stuff......but that could have been my tolerence for pain being lower or me not wanting to do that now even though it hurts bad. im not sure when its been worst i just now that it was at its best around 12/13
Began MTX (if memory serves...) sometime in the early to mid-1980's: over the years dosage has varied and on a few occasions I have have to either reduce the dose or temporarily discontinue the drug.
I have used prednisone, but only as pulse therapy and never more than four times a year. I have had my joints injected at various times with varying degrees of relief.
I have moderate ulnar deviation, both hands, that for the most part occurred before MTX. My feet and ankles are, for lack of a better descriptor, a wreck. I "need" to have my forefeet fused, but... ... ...
The course of my dis-ease has been a series of ups and downs: highs and lows. I am willing to wager that it will always be up and down.
Con brio.
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