Young Adults with RA former JRA | Arthritis Information

 

Hello, My name is Summer and I am 21 years old. Well I will be in Jan. anyways I have had JRA since I was 18 mths old. Going by what my parents told me I woke up one morning and could not move my legs they were stiff. I was took to many doctors and the finally they put cast on my legs to help with he process of getting my legs straight again. Many cast later and many days of physical thyp. I could move my legs freely. I have had only afew really bad down right sick as a dog wishing the pain would just stop days and never come back good bye forever kinda days but the pain never stops. I have never let my JRA stop me from doing anything. I even ran cross country for my Junior high school played basketball and softball but the pain was still there I just wanted to be normal so bad the I put the pain aside until I got home and in the bed then cryed my self to sleep. I have uvitits (sp check that) it is where the inflammation gets into your eyes. The only weird thing about my JRA us that it is only affected the right side of my body. I have had my left knee bother me but nothing like the right one or my eye or my jaw. I have a really offset jaw and now that I am older i can feel the TMJ more in it. I just want to say one thing if you get anything thing out of this. DON'T GIVE UP ON LIFE CHILD PARENT FAMILY MEMBERS JUST STAY STRONG ! I have, I have lost friends, boyfriends and had to leave jobs because of my JRA but ya know what it has just made me stronger. I now inform anyone one that I do have bad days and they are not fun you have to be willing to put up with alot. For instance my boyfriend would have to deal with the fact when I am ready for bed I go to bed cause I get really tired and I don't have the energy to party all night our stay out late with friends but I try until I know it is to much for me. Anyways hope I could help you. You can ask any questions I am very open and don't mind letting people know the truth.Hi Summer, I thought I would post because my situation is so similar to yours. I'm 23, and I was also diagnosed with JRA when I was 18 months; I've had it in knees, ankle, wrist, and elbow. I'm on Enbrel right now, and I've done the whole NSAIDs and methotrexate deal. Just today I found out I have uveitis, and the whole injections/prednisone thing is kind of freaking me out. I had surgery for retinal tears a couple years ago and it was the most awful thing ever. Can I ask what your experience is with uveitis treatment? I think I'll be going with the prednisone, but I've never taken it before and I'm worried about side effects.

Thanks for posting your story; it's comforting to know there are others going through the same stuff:)

So is 18 months the average age for JRA diagnosis, or what? I was 18 mo as well. So was Jesse (LiquidSkin)!!! I'm 23 now and had to go through the leg braces and the wrist braces as well. My worst times were when I was much younger, and I had an excellent doc, so alot of my damage, I believe, was prevented by her quick action. Today I'm well enough that I haven't seen a doc in a few years...though I really really really want now...I'm going downhill... meh. I've only ever been on NSAIDs...so...I guess I'm mild? :)

Theres a lot more of us than I thought there was!!

<3

Yeah, just what is it about that 18-month thing? I mean, I'm sure we all showed certain "signs" of trouble before then, but for some reason, we were all daignosed at 18 months old. Weird! Maybe our parents just thought "yeah, somethin' about the kid just doesn't seem right. Oh well, if it doesn't clear by the time the little tike gets to be 18 months old, then we'll take to little whipper-snap in and see what the doctor thinks is wrong". lol

And yeah, there does seem to be a lot more of us out there than I ever thought I would find. Very good to know you're not alone.

take care,

Jesse

It's the walking - or lack thereof. I was dx at 18m too. My mother remembers thinking what a good child I was, I would sit and watch Seseme Street and not move at all . . .(cue ominous music).Actually, my parents noticed that when they said my name, and would turn to look at them, I would turn my whole body, instead of just my head. It all started in my neck and ankles.Well I guess im the odd one....I was dx at 8, it was a pretty quick diagnosis though, which is good. I got sick when we were on vacation at the beach I just remember complaining my ankles hurt....got a really high fever and we left early to take me to a doctor....he put me on motrin, and then a couple months later i was dx. I dont know how i should define the severity of my jra, I dont really have damage, although i did PT for awhile cause my hips had limited movement....and i take enbrel, mtx and prednisone.....so i dunno!

My mom and dad used to carry me EVERYWHERE cause I couldn't walk far. We had a stroller for me until I was about 4. A little old, but yeah, whatever works! I never had a fever with it. My ankles just bubbled up and I went from walking to crawling, and my mom knew something was wrong. She took me into the doctor many many many times before a random ER doc who just HAPPENED to have been reading an article on JRA saw me. And he went "by god..thats what she has" Bless his heart. I would have been much older before they caught it, I'm sure!!

Katie

The first doctors my folks took me to told them I had leukemia and that they should, "Just take her home.".

Now if they could just mix my Humira into a strawberry smoothie . . .

I was 10 when the symptoms started. And 11 or 12 when I was
diagnosed. I never got any yummy meds for my JRA!!! No fair!me neither! I remember drinking disgusting white liquid naproxen when i was first dx, it was awfull! then i learned to swallow pills...Oh man...I wish I even KNEW how to discribe the taste of liquid ibu! Mmmm it was a pretty orange color. And it had a tang at the end. It wasn't too thick, and it wasn't chalky at all. It was kind of a bright aura to it. It was like...hmm...a soda syrup...sort of. Haha EWWW naproxen was gross!!! it came in a brown bottle i think and i couldnt get it down after the third night....then we did the pills in applesauce deal for a long time before i learned to swallow them.... Hahaha my mom put advil in honey. I'd just suck the honey off, and then the advil pill coating. Which tastes like candy, BTW. And then gag, and spit it out...and she'd get pissed.....this was a nightly thing for about 2 weeks...then she gave up and put me back on the ibu! Haha I have no idea when it was that I ended up learning to take pills. I'm willing to bet I was a bit older. Like 7 or so. (she did all of that when I was 4/5...she was ambitious..lol) I remember my mom would crush up prednisone and put it in
applesauce. Now THAT was terrible. I still gag when I take the
pills....there is always that bitter taste left in the back of my
mouth. Ew! I cant eat appelsauce anymore, it tastes like medicine to me......

Did anyone have knee surgery to correct a growth imbalance? I don't think they do it anymore but when I was a kid in the '70s they did this surgery (that I can't remember the name of). The jist of it is, they scrape out the growth stuff from inside your longer leg's knee to give the other leg a chance to catch up.

I had tons of xrays, to judge how far along I was growth wise. And the surgery did nothing but put me in a cast for 6 months.My legs were a little off, causing some more hip pain, but my
rheumy took a "wait and see" approach, and they ended up
evening out on their own. That surgery doesn't sound like fun at
all!I wish they could have done something for my jaw. That's the only thing that was stunted. So now I have a really bad overbite. :/ And my jaw is just...well...funky. Meh.

Yeah, I have the little jaw - if I ever win the lotto, yadda yadda yadda.

Here's a plastic surgery link - http://www.drposnick.com/reconstructive/index.html go down to "Jaw Descrepancies. . ." Figure 21. There's a before/after pic of someone with JRA.

 

Epiphysiodesis! That's what my surgery was called!

I have been on Enbrel since May of this year.  I am 31 years old.  I was diagnosed when I was fifteen.  This was the first medicine that actually worked well for me.  I hope that it works as well for your daughter as it did for me. 

I'm on Humira now, waiting for it to start working, been on it for 3 months. (JRA dx at 18m, 37 yr old)

Hi RANancy, welcome to the forum.

It's really nice to talk with other people that are fighting the same thing that you are. 

Does anyone still have flare ups when they are taking Enbrel?

 

I do....most of the time i feel so much better but not always....

Hi all,

I was diagnosed with JRA when I was 8 in 1969.  The JRA came shortly after I was diagnosed with hashimoto's thyroiditis, another autoimmune disease. Back then you took tons of asprin (16 a day) and got gold shots. Every once in a while they took the water off your joints and that was it, not too many decisions to make. The disease was in both elbows and knees. I used a cane for several years but as I got older, I went into "remission" (at age 19) just as my rheumatologist said I would.  I was fine during my 20's and 30's.  If it matters I had seropositive, polyarticular disease.

I had relatively minior joint swelling about 3 years ago. My primary sent me to see a rheumatologist because I was seronegative and she was unsure. The rheumatologist told me to stop worrying, it wasn't JRA. He said I had bursitis and a bakers cyst.  Frankly, he was a jerk, called me a crybaby, gave me two injections of cortisone and sent me on my way. Its not coming back he said. Compared to the way things were as a child, the swelling really wasn't that bad so I just ignored it. Fast forward the clock, I am now 45 and was hit hard by iritis in June. Every time I came off the predforte, the iritis returned. It got better when I was put on MTX (15mg). The joint swelling is still pretty minor, I take Naproxen twice a day, but my eyes continue to be a problem. I now have an eye infection and problems with severe dry eye in both eyes. Today, I was put on Restasis.  Does anyone have experience with this. I was told that JRA in adulthood is very different from adult onset RA.

I am frustrated and frankly worried that the joints will get worse.  I started the MTX at the end of August and some weeks it seems to work better than others - is the dry eye a sign that it isn't working??????

Any thoughts out there?  Mentally, this has been hard to deal with.  I am afraid that the pain I remember is going to come back and I am afraid that this disease will take my eyesight. Any one else out there have a similar story????

 

Quite a few here have stories similar to yours, including myself. I'm 37, I was dx at 18months in 1969, had eye trouble which was never properly dx/treated and has left me intensely sensitive to light, went into "remmission" during my teens and I was told it would never come back. (For the lucky 75%, that's true.) I've always tested RF neg.

I was in a car accident in my early twenties and I went from achy knees to full blown, full body involvement, jaw to toes, in a week. My current rheumatolgist titles my disease as "Juvenile Chronic Polyarthritis". 

I have dry eyes as well, that's pretty common in JRA, RA and ankylosing spondylitis. I don't think it's part of the iritis or a sign that the MTX isn't working. (I'm no MD - always ask your Dr.) I haven't moved up to Restasis yet but that is the next step, in fact I need to make an appointment with my eye doc - his "you're due for an appt." postcard has been pinned to my fridge for two weeks!

It seems the MTX is working for you, that's great news! Don't get discouraged, there's a whole army of us 25% 'ers

My advice would be to ask lots of questions, keep a JRA journal - jot down symptoms, questions, a list of current meds and dosages, etc. Bring it with you to your Rheumy and Eye doc, write down what they say. (Don't worry, Doc's love this. Ego boost.

The best way I've found to reduce anxiety is to empower myself with knowledge . . . and watch really bad, physical comedy sitcoms and b-movies! Humor always helps.

She started have some mild but noticable deformity to her figers about 15 years ago. To me, it seems as though it has gotten worse in the past few years and I am trying to get her to go to a RD and get on something to prevent any further damage. She is putting it off until she is 65 and gets medicare. That is in a year and a half. I wish she wouldnt wait.

I really just popped in and started reading your posts. I found it to be very interesting. I wish we had a way for some of you to talk to some of the younger kids out there, and their parents who are going through this now. It must be so frightening to deal with at such a young age. I didnt realize some of the challenges that JRAers face untill Katie was telling about not being able to wear the shoes and even some jeans when she was a kid.

I took the St Jo's aspirin too.  Thank God there's new drugs.  I'm new to this site and looking for people in my condition to talk to.  I was diagnosed a t 18 months.  I had all toes reconstructed at age 18 and both hips replaced at 27.  I am now 33 and am on disability.

 

Hi Vicki, welcome to the board!

You might of noticed most of us hang out in the RA thread, it's really informal here as there are no admin or moderators, so post away!

About our favorite

At 35, I still suffering from JRA/RA.  But, hey, what doesn't kill you makes you stronger.

A lot of good information from all the posts. Thanks

I am new to the boards.  I was also dianosed with JRA in 1970 at age one.  It started only in my right knee and then at age 14 it spread to my right elbow.  I know have JRA/RA, fibromyalgia, and osteoarthritis.  I had so many years of swelling in my right knee when I was little that there is a lot of joint damage.  I had an xray last week and there is very little joint space left in my right knee and I am in extreme pain right now, especially if I walk, put weight on my right leg or bend my knee.  I have an appointment with an orthopedic surgeon next week to see what my options are.  Have any of you had knee or any other type of replacement surgery?  Do I have other options at 38 years old?  As you can see I am a mom to 5 kids.  I want to be able to keep up with them and right now I cannot.

I was forturnate to not have knee pain or flaring for man years and then all of a sudden it has come back with a vegenance!

Wow!! 1970??? What did they have as far as meds back then? (sorry, not to make you sound old, you're not...lol)

In the 80s, all we had was IBU and MTX. That was it! I'm curious as to what meds you've done?

Hello all. My name is Celeste. I was diagnosed with JRA when I was 3. Much like some of your stories I have read, my mother had a hell of a time getting me diagnosed. She went to numerous doctors and received various responses from one who told her it was all in her head to another forcing my 45 degree angled elbow straight and knocking me out from the pain of it....she never returned to that doctor again.

I honestly don't know much about my disease when I was younger. I remember my arm being stuck in the constant 45 degrees and getting excited about being able to touch my fingers to my shoulder. My mother was told that I had arthritis in all but 11 joints. I was taking St. John's for a while when I was younger and started the gold shots around 6 or 7 years old along with Naprolyn (Naproxen later on). This held up real well and growing up with JRA I was none the wiser that it was there. When I was 17 I was diagnosed with Fibromyalgia but this has been the least of my problems. My doctor had informed me that it looked like I would have RA continuously, since she saw no signs on me going into remission yet.

When I turned 18 my doctors suggested I go on Methotrexate because the gold shots were no longer producing the results they wanted. I admit that I was a bit of a troubled patient. I didn't really like the doctor I had for the majority of my teenage years and believed that I was the one who knew my body better than her. By the time I was in my early 20's I decided to go off my medications. I was not feeling stiff and felt like I was putting drugs into my body that I didn't need anymore. I kept going to my doctor every few months and haphazardly took my meds when I thought I needed to. In fact, while my doctor did not confirm it, I felt that I had gone into remission.

Almost 4 years ago in my college town I was riding my bike and was struck by a car. I landed like a cat, on my palms and my knees. Although I luckily walked away from the incident unscathed (and probably due to my advanced adrenaline levels) I could not have imagined what would happen. The next few weeks afterwards my friends mistook me walking on the street for an old bag lady because of my posture and the way I moved.

Ever since this incident, my arthritis has been unlike anything I knew before. One fun day during finals both of my knees swelled to 3 times their size and caused me much pain. I had to walk around like a gorilla because of all the fluid in them, it was a humbling moment for me. I have continued to have this swelling reoccur no matter how much fluid the doctor takes out.

I am sure you are all thinking, what is the point of your story? Well, many points I need to make. From my accident I have started a lawsuit and of course the insurance company of the car owners swears that all this pain and swelling of my body has nothing to do with the accident and everything to do with my arthritis. Normally one would think this is not problem, but alas I do not have health insurance so the only person covering the costs for all of this is me. For the last year and a half I have been living in Germany and working at an American military base. The German doctors I am seeing here are worried about my knee. They clearly see a correlation between the accident and the veracity of my arthritis. They are now talking about surgery for my knee and I am a bit worried about this. Before I consider anything, I need some information on possible other medications and their costs. I haven’t been on Methotrexate for the last few months but while I was on it the swelling of my knee still existed, as well as the increased stiffness in the morning of my knees, elbows, toes, ankles, wrists and fingers. What medications do any of you suggest taking? For any of you going from JRA to RA, did you ever see a point in your life where it looked like you were going into remission or that you were not in as much pain as when you were a child? Do any of you feel that your RA has become worse than your JRA? Has anyone tried any homeopathic medications or eats a restricted diet?

I admit that I never took a full interest in my illness before and assumed all would figure itself out. This has wholly been my fault and stupidity. But now that I am becoming an adult and wanting to travel and see the world, it is frustrating to have this liability all the time; the pain, the stiffness, the swelling. I want to treat my body right and do all that I can for it. I don’t want this illness to define who I am or what I do. I am lost right now and just looking for some advice. I have read many of your posts and am really inspired by them, so any advice you give me would be appreciated.

Hey my name is Alicia, I began having symptoms when I was sevenish and wasn't diagnosed until I was 11. I am 21 now. Anyway at that time I was also diagnosed with Fybromyagia. Because of the two there were two docs in the state I lived in that would see me. I did the pain relievers, disease modifiers, and predisone. Nothing really has helped, but I have not let it get to me at all!

Hello! I'm new to this forum, my name is Margaret. I'm 31. I was diagnosed with JRA when I was 15. It started with muscle aches and then a terrible rash all over my body and then I started getting the really high fevers and joint pain in my ankle. I was in the hospital for a week while they tested me for everything from lime disease to lupus.
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