HI, my name is Allison and I am 16. I was diagnosed with Polyarticular JRA at 18 mos. I am 16 now. The doctors said that there was an 80% chance that I'd grow out of it by the time I hit puberty. No such luck. I've been son several medicines throughout my life, Prednisone (which really helped, but may have stunted my growth), Methotrexate (which irritated my stomach), Voltaren (which made my kidneys bleed) and the newest, Enbrel. I have taken many others, but their names have escaped my mind.
I have been through physical therapy of many types- horseback riding, massage, excersize, and nothing really helped. However, other than stiffness and the ability to make a fist, the arthritis really hasn't messed with my life. Sure the side effects of the medicines I took stole a bit of my life, but otherwise I've been able to do just about anything I've wanted, unless it was very physical (running, push-ups, pull-ups...), now all I want is to hear other people's stories. I want to connect with people who have experiences similar to mine. I'm not trying to be whiny here, just to share what has happened to me.
Thanks,
Allison
Hi Allison,Allison,
I have not been in your shoes but I do have a 6 year old daughter who was diagnosed with polyarticular JRA. She was affected in every joint except her back, and jaw.
Your story gives me inspiration that maybe one day my daughter will have a positive view on what has happened to her. She too has been on numerous meds and right now she is on mtx and enbrel. The enbrel has made a tremendous difference in her life. She still struggles with her left wirst, she has lost a lot of range of motion but it doesn't seem to keep her down. I am praying she will "outgrow" this but I think I know in my heart of hearts this will be a life long challenge.
I will say a prayer for you tonight and pray that maybe you will still "outgrow" this disease and if not, for you to have the strength to perserve through any thing. Look what you have made it through so far. Huge (((HUGS)))
my daughter is 12 years old and starting to have symptoms of RA. I have RA myself. I need some help maybe you can help me, She says that her knees, ankles and back really hurt her after she is on her feet for hours. Especially after a football game. In the mornings she is stiff too.There are other things that concern me too. This all sounds just like my RA. When you started having JRA symptoms what were they? And how did the doctor diagnose you? Any help would be great! Thanks Gina
Gina-
Yes, that sounds familiar. When I first had JRA, one of my knees swelled up a lot, but I was sore often in my joints and there was lots of stiffness when I would get up in the mornings, and still is. She may have pain, but not say anything becasue she's gotten used to it. This happens often. I don't really remember how they diagnosed me, I was very young, but I know it takes a while to make sure that that is what it is, and not something else. Mostly they just played with my joints and took X-Rays from what I remember. I hope you find out what she has soon so that she can be helped. I know how frustrating it can be.
Brandy and Mike-
I feel for your daughter, I know how tough it can be, but I am happy that it isn't anything worse. Enbrel is a great medication, even if it is with shots. What I've found has helped a lot is a parrafin bath. When I was diagnosed, my doctor suggested that I buy one. It is a smallish tub lined with metal that when plugged in gets very hot, and melts the parrafin wax you put inside. Then you dip your hands in the wax several times and it solidifies. It's a soft wax, so it doesn't get hard at all, and it stays warm. It helps the stiffness in my hands a lot. It's also kind of fun to play with. ^_^ And when you're done, you just peel the wax off your hands and put it back in to melt. The only problem is that if you have pets, fur will get in the wax if you don't keep the lid on. Give your daughter a hug for me and tell her to keep her chin up.
~Allison
Thanks Allison.
I did buy a parrafin bath for her. She loves it. I have 6 kids and they all fight over who is going to get to stick their hands in it.
To make a long story short the mass turned out to be a baker's cyst. Which is consistent with JRA. Finally, they called in a ped rheumy and she started her on naprosyn. 6 weeks later we finally get the diagnosis. Polyarticular JRA.
Some days I am angry that a child has to live with this but then there are days that I am glad that is ALL that we are dealing with. Thanks for the encouragement and you keep your chin up also.
Please know that you are an inspiration to a lot of people here.
I used to be angry about it, but that never solved anything. So, I decided that I could just live with it. There are worse things to have to deal with. I'm glad that I can be such an inspiration, I never thought that anything good could come of JRA, but I guess I was wrong. ^_^
Dear Allison,
Your story made me believe that theree are others out there who have problems like me and i thank you for it.
I am 16 and i was diagnosed with Polyarticular JRA when I was 13. My whole life before that, no one could tell me why I was in pain. I went through lots of blood tests and X-Rays but they never showed anything. I am glad i finally know hat I have. Well my JRA has affected my body alot. Both of my knees swell every few days to the point of barely being able to walk, three of my fingers are crippled but i can still use them, I can barely turn my neck because it affected a few of my vertabrae, I have a bad hip,my right wrist swells and is stiff alot, and it stunted the growth in my jaw. When people meet me they never know that I have arthritis because I hide it well. The doctors have put me on Vioxx and Celebrex (those were recalled because people were dying as most of you probably know) but I hate taking pills so I don't take anything currently. I am constantly tired because I am always in pain. The doctor I have now wants to put me on malaria pills( they're not used for malaria anymore) but I am still hesitant to take them. Before my current doctor told me that my case was serious I had always thought that there are alot more people out there with worse ( which there still are) btu now having JRA scares me.
I decided to search the internet to see if there were others like me and I am glad that I found this site . I really want to chat to people who are like me so if anyone has msn messenger please add me at suicide_hang_man@hotmail.com ( the addy is not reffering to me, suicide hang man is my favorite band)
Thank you again Allison.
~ Leah ~
Wow. I've only ever met one other person my age with JRA, but I lost touch with her when we went to different schools. Firstly, I want to say thank you for supporting me so, with all the typos and whatnot in my first post I thought I sounded like a loser : ) I hate pills as well and have had to go through several before my doctor put me on Enbrel, an injection, which is great. I haven't heard of malaria pills being used for arthritis, let me know how it goes, if you decide to choose that path. The arthritis is worst in my hands, and all of my fingers have limited mobility (I can't make a fist or open my hand out flat) but I can still draw, which is my favorite thing in the world. Once you get on a medicine that works, the swelling and crippling pain will go down. Ask your doctor about Enbrel, even if you're afraid of needles. Trust me, it's worth it. My MSN Messenger doesn't work, but I will certainly send you e-mails!
~Allison
Dear Allison,
I am desperate to have you pursue the possibility of having Lyme disease-a very easily treated disease-with advanced and prolonged antibiotics. My son went lame and my daughters legs are inflamed/go-out,among other things-as well as mental symptoms also from Lyme. I myself have a Lyme Disease diagnosis and I have the same symptoms as RA. It also tests positive -shares the same"band" (#ed on special blood tests)for Lupus-in fact many Rx believe that Lupus IS Lyme...if the antibodies are the same then the treatment is the same as well. Rhumatoid arthritis, ALS-or Lou Gehrig'w is also considered Lyme by meany medics-laster cellular research....get tested!! 70% of my PA county is est. at having Lyme-although most undiagnosed...just look at the #'s of dogs who have IT!! I also had carpal tunnel, exhaustion,Bell's Palsy, cysts,teeth problems,Raynaud's ,Xtreme arthritis in arm joints and wierd menses/PMS. My family all has or has had it including my parents. My parents are receiving drip antibiotics through a "shunt" and my kids responded to oral antibiotics. Treatments (from 3 different Drs. bet. us all treated the lengthy time frame) lasted more than 2 years of antibiotics. Skip the doxy probably-and go straight to something like Mepron or Zipthromax for your advanced symptoms...it sounds like you have had the bacteria for years. Most of us never have a tick bite- and it is transmitted like Aids-through bodily fluids through a mother to her baby (has your mom/dad ever had symptoms?). Acorns(tick larvae), white footed mice and deer, as well as all blood sucking bugs(even mosquitos) are now believed to transmit bacteria. Get medicated-quickly and see the miracles begin.My son can walk again and hold his urine! My daughter is beginning to memorize her coursework again! Interestingly my doc also began Diflucan-due to immune system depression from yeast/fungus....we'll see...we are all better and yet Lyme never goes away-just is maintained.the bacteria "morphs" into many different forms-that's why they are never fully eradicated-they "hide". Many of your responders may find help for CYSTS as well for they are often the "white matter" collection of granular celled Lyme bacteria -a colony, (although surgery may well still be needed...remember 50% or more of knee surgeries are now linked to LYme, and are considered "unneccesary) My friend had a huge cyst removed from his back, and then began having Lyme symptoms of RA- and is now getting relief from antibiotics. I have urged many to seek treatment as I have become well read and teach many students who have Lyme and have ADD,etc.from it ( 20% at least now they have found have ADD from Lyme) Find a "LYME LITERATE" doctor & remember the AMA states"treat the symptoms not the blood test"-often you test positive only AFTER the medicine kills enough bacteria. Look up Lyme on the internet as well you are not alone -best wishes. annettie
Thanks for your concerns, I'll look into it. None of my family members havea hd Lyme disease, but I'll get tested, just to be safe.
Dear Allison,
You are the first person even close to my age that I have ever known to have JRA as well. I thought I was weird to have it but now I know that there are others like me. Yeah it affected my hands first. Several of my fingers have limited mobility, I can't straighten them . But anyway, its nice to know you and I will be sure to keep in touch.
-Leah
I can't straighten them or make a fist, but hopefully that'll change when I try the Cortisone Injections! I'll be happy to keep in touch! it's nice to know that there are others like me!
Allison
Thanks for your story. My 13 yr old daughter also has had JRA since 11 months. Hers is mostly in her knees. It has just been bothersome, but not debiliating (praise God). It has also really limited her ability in sports. She finally quit dance because her knee was bothering her too much. I think she has developed a high tolerance for pain. She has had 3 surgeries on her knee(for something we are not sure if it is related) and has a pretty good scar on that knee. She thinks it stinks that she has to go to the doctor, take medication and inparticular have her blood drawn. Anytime I tell her 'it could be worse' she doesn't even want to hear it (which I do understand).
I can't wait to show her your story. Thanks for sharing it. Have you ever gone to any convention or met other girls with JRA? I'd love to let her know that she isn't alone.
Thanks!
Hey,
I'm 17 and have JRA only in the Uk we call it JIA same thing pain, pills, injections, swelling etc. I haven't really found many sites to talk to people who have this, and are around my age but i'm glad i have. I have been on countless drug and have already ahd 1 TNF drug starting Enbrel in a few weeks and i' worried. Thanks for making me feel normal again
Hi Allison and Leah
I am 17 years old.,. You guys stories are pretty similar to mine. i was dx with Juvenile Rhematoid Athritis at the age of 13 and i was unable to do anything.. i could hardly even walk.. I was on prednisone, metho, enbrel... I am doing alot better now but i am still on enbrel and metho... I dont know many kids my age that can say that they have arthritis..
Andi
Allison,Hi Tammy,
Boy does your story sound familiar. I just joined the board because I have been dealing with the same thing for 3 years. My daughter is 17 now and she has had eposodes like your daughter. First it started with her knees then ankles, wrist and a stomache ache, loss of wieght. And I remember the crying and having to have her stay home on days everything hurt even her spine. My daughter Amber had a rash though. For the first two years it seemed to happen mainly in the winter. Now she is having flare-up in the summer too. She has not been diagonsed yet. The first 2 rhuematologist she say (it was a group) becuase she doesn't have damage to her joints she must not have JRA. The last 2 said it may be a virus. Her last flare-up (about 6 weeks ago) she had strep throat, then swelling of her eyes and then swelling of her ankles. Our doctor took more test and her Crp was high and her RF factor was negative. They thought she may have rheumatic fever. We went to a Cardiologist yesterday and he does think she has rheumatic fever instead a rheumatic diesese like JRA. We are seeing a new rheumatologist on the 27th. (we have great doctors now). Don't give up they will find out what is wrong with your daughter. On my journey I have found out that there is 100 different types of auto-immune dieseses. There are alot of other things that mimic (have same symptoms) as JRA Amber was given a lyme test becuase that mimics JRA same with rheumatic fever . I know from first hand that this is tough Tammy but, maybe we can help each other and you younger crew if you have any ideas let us know
Hang in there
Darleen (Dar)
Darleen,
Hi Tammy,
I will pray for your son. Hopefully it is a fluke and let me know what happens. You sound like a strong mom so it he does have diabetes you will know how to handle it. About your daughter I don't know if the cold effects it or not. I know that Amber has a tough time in the cold becuase she has reynauld (sp) It where her finger tips turn red and her hands are white. But we live in a warm climate and she gets flare-up just as bad in the summer. However, Amber says taking a jacuzzi seems to help. So maybe cold has something to do with it or the mosture in the air. Of course as you know somedays I just cry with her and hold her. Amber ankle felt mushy too. It's still a little mushy but she is feeling alot better. That's the thing about this it comes and goes. Her's last for about 6 weeks and then she get better. It almost seems as if she is on a roller coaster and on the top of the curve is when her symtoms get the worst. Then they taper off. How about Katie? We know when Amber going to have a flare-up when her stomache starts to hurt. That caught my eye when you said that about Katie. We also thought about an upper gi. I am going to ask the Rhuematologist when we see him on th 27th. Trust me I know that this can be frustating but sometimes all we can do is hold on and hang on tight and lots of hugs and patience. By the way here's a big hug coming your way from one mom to another
Let me know about your son and I hope Katie feels better soon. Take care and god bless
DAR
I was diagnosed at 12 with JRA (now 17) and have also tried multiple medications with no affect. No side effects at all really, just nothing is working! I am considering trying Enbrel and I just got my TB test today to get the OK to try it. Self injection is sounding sort of painful but im willing to give it a go if it makes the pain go away!
Buh Bye!
WOW It's neat to see so many people in similar situations... I am 23 and was diagnosed when I was just 18months old! I just want to say:
To the parents:
Hang in there! My mom was a freaking TROOPER, and I needed that, I thank her to this DAY for being so thorough with everything. She and my father were so patient with me. In almost all of my little kid pictures, SOMEONE is carrying me..lol And they always planned for frequent stops and made sure to never appear to be annoyed when I said I couldn't walk anymore, even though I know they were sometimes. LoL Looking back on it, I appreciate a lot of things I never realized they did for me. Like not hovering over me and asking me "why did you get up so late today?" or "why are you taking a nap?" like all of my friends parents did! I was always tired...My mom was really good about prying into my day, and how I was feeling...that sounds silly, but having pain at such a young age, you become immune to it. A 7 year old REALLY WANTS to go play, and most likely if they can, they will...eventually you don't notice pain that everyone else would, but that doesn't mean it shouldn't be treated! My mom kept a close eye on me, and I can remember limping into my bedroom, and hearing a knock moments later - opening my door to find my mom with a heat pack for me :) Just don't give up on them..because a long the way, their friends will do that. Maybe that sounds grim, but it's better to face the posabilities than to turn a blind eye to them. People aren't always understanding, so kids need a place to turn to NO MATTER WHAT. And that's all you have to be - Just THERE.
For the Kids:
For those that look at you funny, or think you're just playing it up - SCREW EM! :) There's more fish in the sea. I used to get hung up on why people couldn't understand that I couldn't run like they could, or do pull ups, or push ups, or climb as well..and then I just kind of gave up...and starting hanging out ONLY with people who were willing to accept it, and not badger me about it all the time. Don't be afraid to speak out. When I was in thrid grade, I had a TEACHER who used to ask me if it was going to rain. I thought it was very rude, so I told my mom. She took care of it. Haha Don't ever assume that everyone is going to be accomodating, and don't ever assume that they WON'T be either. It's okay to be in too much pain to go out. There's nothing wrong with staying in. Rent movies...lots of movies...lol Don't be afraid to cry. Being a teenager sucks, without having a problem. NO ONE is going to judge you for crying, especially your family, and sometimes its just all you can do. Sometimes it's the greatest stress reliever you have. You're already emotional...and adding to that pile of emotions is one sucky disorder. You have every right to be upset and cry and be emotional. Just make sure you can put that aside and still LIVE. Don't get wrapped up in it. Talk to your school about testing out of P.E. classes...no need to make yourself suffer through things you know you're not going to be able to do, just to make the state boards happy. My highschool waved me of 3 P.E. credits, it can be done. Don't force yourself - just because someone else yoru age can do it, doesn't mean you have to. I've been using devices to help me open jars and things since I was 12. And oh well. At least I can get into the jars on my own, right? Have lots of pens. You never know what kind of pen day you're going to have at school. Don't carry too many books and things, see if your teachers can provide you with a copy of the text book in the class, and one for at home, most of the time they can, as long as you keep it hush hush. :) Pick a desk thats in a corner, if you can - when you need it, you'll get more back support. Always take a jacket. If you don't need it in your COLD COLD classes, you can use it as a butt or back cushion. No school's seats are comfy...Oh man, I'm sure there's lots of other things I've forgotten...it's been a few years :-P If you're having trouble with anything, Just ask! I came up with LOTS of things throughout my years to help me get by.
:) Best of luck to you all! :)
Allison,
They told me that I may grow out of mine to so its not only you. I an glad to see that you are like me that you have not let your JRA stop you from doiing anything. Things will get better then worse but you seem to be very strong and you will be able to deal with with it. My doctors told me my JRA was so bad that I would not walk at my high school grad. well just let me tell you I did it and I walked at my college one also. Living with JRA is not easy but hey what does not kill us makes us stronger. Take care and if you have any questions just ask.
Hello everyone. My name is Jesse and I was DXed with JRA at 18 months old. I'm 29 now and pretty much every joint is either severely damaged or replaced (had my hips and elbows replaced). And ya know what, my doctors and parents always told me I could just "grow out of it", but no such luck. Starting to wonder if that's just something they tell kids to give them hope. Although, my rhuematologist seems to think that may have happened with me, that the arthritis is technically out of my system, but the joint damage has already been done, so...too little, too late I guess.
Growing up with this disease is pretty hard. The physical pain was very severe for me, but the emotional pain was what really bothered me. At about the age of 11 years old, I started going through a major bout of depression. My parents actually sent me to a shrink for a while because they thought I had problems and may have been suicidal, and maybe in a way I was. I just kept getting worse and worse physically, and just didn't see how I could continue living if things kept progressing the way they were. And on top of that, it is at that point in a young persons life when they start to "grow up" a bit and start to notice the opposite sex. I was no different. But I felt like a freak, and people looked at me like a freak. I knew that no girl would look at someone like me and think, "wow, he's hot". So that had me feeling very down and hopeless.
But I had a very supportive family and terrific friends. I also had my hobbies to distract me (mostly music, movies, and reading). So within the next couple of years, my attitude changed. I went from being a depressed and hopeless adolecent, to an angry and wild teenager. I didn't get sad anymore when people looked at me, or when girls ignored me. I just got angry. And that anger drove me to do better. Drove me to do good in school, drove me to work harder on my exercising (although not hard enough), and it drove me to really explore my creative side. And along the way, with that anger, I learned to not take things too seriously. People can think what they think and that's thier problem, not mine. I learned to have more of a sense of humor about things, and just learned to enjoy life and make the most out of it. I didn't dwell anymore on the things I COULDN'T do, but instead took pride in and concentrated more on the things I COULD do. And, with time, even a lot of that anger faded and I was able to just enjoy my life and be content. Don't get me wrong, I still have a lot of that "angry young man" in me, and I still get a little down from time to time. But I now know how to control that and channel it into something prodictive, mainly music. I mean, think about it, if there was no anger, angst, frustration, saddness, heartbreak, or pain in life, then pretty much all music would be a bunch of happy, annoying garbage! Some of the best songs ever written, or the best art in general, has come from turmoil.
Bottom line is, we have problems, but who doesn't? Ya just have to deal with things the best way you can, find your niche, and keep pushing forward.
Take care everybody,
Jesse
Hi Allison - this is my 1st experience with message boards, bear with me. I was so moved by your story. My daughter is 13 and just diagnosed with JRA. She has uveitis and her elbow is involved only at this point. Can I ask what your dosage is of Embrel? I am concerned because my daughter only weighs 83 lbs and Rheumy wants her on 50mg dose. Seems too high to me? Hang tough!Hannahsmom,
Allison posted that months and months ago and i haven't seen her around. Feel free to visit the Rheumatoid arthritis board, that is where most everyone is. Also, don't be concerned about the the drugs prescribed by your doctor. You will find many members here that think that they are smarter than the doctors but I am very sure that your DR. is quite knowledgeable and has your daughters best interest at heart. I take 50mgs of enbrel every week. I am changing to humira next week. Altho the enbrel has worked well and relieved alot of pain, the doctors are hoping for even better effects from humira.
http://www.arthritis.org/communities/juvenile_arthritis/abou t_ajao.asp
I think that you and your daughter will find the above site very helpful. I hope i have been helpful. Good luck to you and your family on this wild rollercoaster ride, hang onto one another.
LEV