Arthritis Foundation Forum / Juvenile Arthritis / Young Adults

Juvenile Arthritis Support Group in D.C./VA suburbs

Robin . — Thu, 29 Oct 2009 11:39:28 GMT

I have Systemic JRA and finally decided to start a support group!http://rasupport.wordpress.comor go to this website to see the calendar of events and other member profileswww.meetup.com/gfarthritis

23 year old-Being sent to a Rheumatologist:

cindysocal7 — Tue, 27 Oct 2009 19:25:01 GMT

Hello, My name is Cindy. I am a 23 year old Army wife and mother to two (2 year old and 4 month old). In the last 2 months I have had progressively worse pains/twitches/burning feelings in my extremities: started with my hands and feet and spread to my arms, shoulders, neck, knees, legs and hips. I was referred to an Internal medicine doctor who poked at me with this little device for about 15 minutes and he quickly sent me for 6 viles of blood and x-rays of my hands. He is referring me to a Rheumatologist. I was told, after speaking to my mom that evening that several women in our family suffer from Arthritis; however, most of them weren't diagnosed until their late 30's early 40's. I have been told my many people that 23 is "too young" to have R.A. or any other form of arthritis; however, it seems the doctor is confident that the Rheumatologist will diagnose me with some form of Arthritis (or maybe fibromyalgiak-which is also in my family). I feel like a 70 year old woman and I am 23... I am in a ton of pain because they can't give me anything due to me nursing my 4 month old still. Anyone been through this? What should I expect? Is it really unlikely that i have arthritis considering my family history of it? Any help, advice, insight would be great because I am getting a bit nervous. Thanks!

Young Adult Program

Beth Axtell — Mon, 26 Oct 2009 09:25:50 GMT

The Arthritis Foundation is considering developing an education program for young adults. Which topic would be of most interest to you? If you have any other suggestions or recommendations for how the Foundation can welcome young adults into our community, please let me know.

20 Year Old Female with Severe RA Looking For Friends To talk to With Same

Rebecca Stresow — Thu, 01 Oct 2009 22:14:21 GMT

Hello everyone. My name is Becky and I've been diagnosed with Severe Rheumatoid Arthritis for about a year and a half now. Last April I started experiencing severe pain and inflammation in my right middle finger- didn't think much of it. Little did I know that a month later that the joints in my feet, fingers, wrists, jaw, knees, hips, elbows, and shoulders were giong to do the same. I have been on the injections Humira, Enbrel, Methotrexate (And pill Form), Prednisone, and none of them seemed to help at all. So my specialist sent me to the Mayo clinic for Research and I am now doing intervenous with Orencia while taking the injection Methotrexate once a week. And it seems to be helping a little, but I can still barely get out of bed. I am losing hope, I wish this upon nobody! :angry: So I am just looking to find friends to talk with about this, because my friends and family don't understand. Thanks :-)

I'm 20 but feel 80

hawaiiangrl85 — Thu, 30 Nov 2006 12:46:27 GMT

Well this is my 1st time here, so for background info My name is Erin, I'm 20 years old and diagnosed with severe rheumatoid arthris in sept of 05, but the doctors believe I have had it since i was about 15. So going untreated for so many years the disease has progressed drastically and spread everywhere. I was just recently informed that its possible I will be in a wheelchair by the time I'm 30 if i can't get into remission. While finding this out I was also tested for TB (tuberculosis) before i was able to start any meds and I am also now a carrier for it, although it isnt active in my body I still have to take medications for it. I'm currently taking about 20+ pills a day, I am on Methotrexate, plaquenil, sulfasalazine, folic acid, Ibuprofen, Isoniazid, and tylenol w/codeine for the pain (what a joke!) They want to start me on injections of enbrel, humira, or methotrexate but are too scared of the TB becoming active and my body not being able to fight it off because of all the meds affecting my immune system. So on top of all that about 3 weeks ago I was in the emergency room with signs of a stroke, had a cat scan done and all they could confirm was having severe vertigo and gave me yet another medicine. So i go to my primary physician a few days later for a check up and my regular blood test results are back that i get done every 2 weeks and now my platelet count is high and i get yet another medicine to thin my blood. Plus heart disease runs in my family, my father and grandfather both died of heart attacks, so now im being monitored for the clots. I'm going insane! I'm not even legal drinking age yet and i feel doomed! Before all of this happend I was working 2 jobs and starting college, and now it feels like I dont even have a future, or much of one if I do. I turn 21 in about a week and I just want to be a normal 21 year old and have my 1st drink at dinner and just whip out the ID, like HA! I'm 21! lol but i cant :( I have plenty of friends and they feel bad and are there for me, but they dont understand. I cant go out with them like I used to, bowling, camping, fishing, driving down to san fran for the hell of it just to walk around the pier and come home at 2AM. My life felt like it was just starting and now it feels like I dont have a life anymore. I sit at home because thats about all my body lets me do. I live with my mother but she has enough of her own problems going on to be concerned with mine, so I'm glad I found this forum, and to know I'm not the only one feeling this way.

RA & Birth Control

Anna Guimaraes — Sat, 12 Sep 2009 22:04:20 GMT

Hi there, everyone. I'm pretty new to the place and have been searching for a few days for an answer to my question and haven't been able to find anything, so hopefully you guys will be able to give me a hand.

I have Juvenile Rheumatoid Arthritis, have had had since I was 8 (I'm 20 now) and I was doing quite well. After going through several courses of treatment, right now the only thing I'm on is Nimesulide for handling the pain and the ocasional very small dose of Prednisone for when things get a bit too rough - luckily, it rarely ever happens anymore. (:

However, lately my little JRA buddy has been acting up quite severely. I noticed a huge increase on the pain ever since I started taking birth controls pills (a very low-dose combined oral pill). My doctors had cleared me to use it and it isn't said to have any effect on RA, but I fear it might.

Of course, we all know that stress and emotions all have a great impact on RA, so it's plausible that possible moodswings (a very common side-effect of the pill) could be responsible for some pain. And I should say that I've only been taking them for a month and most symptoms are said to clear up by the third month, but I honestly don't know if I can (or should!) handle 2 more months of this amount of pain again, after having been doing so well for so long.

So my question for you guys is
Have you ever used contraceptive pills and what was you experience with it? Did it have an effect on your RA or none whatsoever?

I find there is rarely anything about this on textbooks or elsewhere, so we should rely on each others experiences. This may be taboo for some, but it is something that should be addressed. It is as relevant to quality of life as anything else, after all.

Thank you for your help in advance! I look forward to any replies!

Juvenile Arthritis Ice Cream Social

Donna341 — Wed, 30 Sep 2009 09:32:11 GMT

YOU'RE INVITED

WHO: Children, teens and adults with any JA diagnosis and their families

WHAT: Juvenile Arthritis

Ice cream Social & Fun Day

WHEN: October 24, 2009

2:00pm-5:00pm

WHERE: Country Club Estates Club House

3040 Country Club Lane

Jeffersonville, IN 47130

RSVP: 502-409-4841 or ajaoky@aol.com

My story

Kelly Finamore — Sun, 23 Aug 2009 23:11:13 GMT

My name is Kelly Finamore. I am 19 years old and have had Rheumatoid Arthritis in my knee since I was 4 years old. For 15 years I have been going in and out of Tufts Hospital and allowing my doctors to watch me grow. Very recently I have found pain in my wrists and fingers. Throughout my entire life I have found relief in sports. Particularly lacrosse. I share a story like most people who have rheumatoid arthritis, fighting to stay equal to the rest of my peers but sometimes falling short. In my case, I refused to let my arthritis take my down. I made the varsity team in my hometown my freshman year, and continued to play it all throughout high school even earning the captains spot my senior year in both Lacrosse and Basketball. Entering college at Fitchburg State I am majoring in nursing, and thankfully made the lacrosse team and even started my freshman year. Going into my sophmore year I recieved news in my email. The email stated that I have been chosen to play on an International leauge next summer to represent the United States.This leauge would be touring 4 countries in Europe next year for 12 days. Denmark, Germany Czech Republic, and Austria. It is an amazing experience that I couldn't pass up. Unfortunatly the cost of this trip is $3,993. I was hoping that I would be able to get a donation from the anyone willing, or to be somewhat sponsered through it. To ease the pressure put on my parents.I believe this trip will be a learning experience on and off the feild that I could keep with me for the rest of my life. I understand that with many other children suffering from arthritis that you may not be able to help me. If not I would still like people to read my story and take away that having arthritis doesn't have to cripple you, you're in control of this disease, it doesnt have to be the other way around.

Website for organization:

http://usaai.org/

Thanks for your time,
Kelly Finamore

22 Abbott St S. Weymouth MA 01290

Low Grade Fevers

bbkroo — Wed, 22 Oct 2008 22:14:52 GMT

Hi all,

I am not a young adult (I am an old adult, lol) I have ra and I am the mom of a 15 year old boy that has had JRA for quite a few years. He is Curently taking Relafen, MTX and Leukovorin. He has been doing really well for quite some time on 15mg of oral MTX. The past sev months though he has had 1 finger that is very swollen. Now in the past month 5 more have become very swollen. He saw his rheumatologist and she is increasing his MTX to 2o mg by injection to try and get his hands better. My question is do any of you run frequent low grade fevers? He use to run a lot of fevers but it has been a very long time since this has happened and now he gets them 3-4 days a week for the past at least few months. It is always in the evening. His rheumy did not say much when I mentioned that but said maybe he should be checked over by his ped. He does not have any sore throat, stuffy nose or other symptoms of illness and his blood work is all good. I was just going under the assumption that the fevers are JRA related. So how bout it? Do any of you get fevers too? and what does your doc have to say about it?

Thanks!!!! :)

JRA: chin implant

Juli226 — Sat, 19 Sep 2009 11:22:46 GMT

Has anyone received a chin implant to address smaller jaw in JRA?

Young getting a finger joint replacement and then a fusion

Emeka Banor — Tue, 12 May 2009 00:10:58 GMT

My name is emeka and i'm 21. I've been living with post traumatic arthritis on my right hand since i was 18 years old and this thing has taken its toll on me. My cartilages are completely worn out on my index and middle finger, also my wrist and thumb base and this really sucks. my doctor said that he will replace just the index knuckle and this should help with the pain. I will also get my wrist fuse months after the replacement and i'm plain scared about what my livelihood will. is there anyone who is just as young and have had a joint replacement, how is yours working out for you?

why so much pain

amh125 — Sun, 17 Dec 2006 21:29:18 GMT

i am 12 and i have been sufring sen 3 and i cant hold on anymore whit the pain i just want to cry but i dont want to ask my about surge but my elbows and Knees and sholders and neck,hands and wrist cant take it anymore what should i do so wouried becuas i cant move very much and i have to us the elaverter at school and i miss alot of school becuas the pain is killing my joints jra i cant take it anymore and i kep going to drs and the hospilt but they dont do much for the pain and teacher want me to tell them when im hurting but i dont like to complan anyways what can they do NEED HELP PLZ

You Would Think School's Would Care !

Kristin Pattie — Thu, 10 Sep 2009 12:18:04 GMT

My Name Is Kristin Pattie .. I'm 17 years old with JRA and it's been that way since the time I was two. My fingers are crippled in ways that are sometimes hard to look at, my legs are difficult as well one's longer than the other which makes me walk with a limp, and the Arthritis has pushed my jaw line back to make it look as though I have no chin at all. I have improved greatly over the years with the help of Dupont Hospital For Children and their Amazing staff. When I was first Diagnosed I was on gold medicine untill I was around 10 when they switched me over to Kemo & a twice a week injection of Enbrel Which works amazingly I might add. When I was About 13 they took me off the Kemo which actually made me feel much better. For Grade school I Attended St. Joesphs School in Collingdale , Pa. They Didn't do one thing to help my situation. The school had many stairs and for someone with this diseas I Hope some agree when I say Stiffness in the morning is The WORST ! Well because of this I was Constanly Late but the school looked past the JRA and said I was using this as an excuse and pununished me for this. So when I did arive at school I had to walk up FIVE flights of steps with a backpack that weighed more than I did at the time. The school did nothing about this either , the most they said they could do was provide me with an extra set of books so I no longer had to carry them which was appericated but because of my constant lateness they did not allow me to go on school trips or even attend my 8th grade graduation. My stiffness is something that I shouldn't be punished for ! Along with that the kids didn't take well to my differences I was unable to pertisipate in sports & other things the kids my age liked so for this I was constanly teased and reminded of what was wrong with me. When I moved away from Collingdale I enterted school in Ridley, Pa. Ridley High School Has some Comidations like an elevator instead of stairs which also is much appericated but being 15 with about 800 other kids looking at you because your different makes you want to stay as unnoticed as possible so I didn't take the elevator. I wanted to fit in I didn't want to be ridiculed for something I couldn't help. That didn't stop them. One day when I was walking home a car full of senior boys followed me all the way home taunting me and yelling things to me that made me no longer want to be there. The constant late thing was still the same and again the school didn't understand about the stiffness in the morning ! So again I was punished for something I couldn't help. I eventually went on Ridley High School Homebound so that I no longer had to see the stairs of the students that made me feel out of place and the lateness was not an issue. The teachers came to my house which made everything alot easier but I had to have something from my doctor every three months & with the scheduling that Dupont has it isn't the easiest thing in the world to get an Appointment so MRS. TRAVIS who claimed she was incharge of Homebound cut me off and I was out of school for a little over a year because of this nonsence. At the end of the last school year I had handed in my papers from the doctor so that I could be back on the Homebound by the start of this School year. When I went to ridley to see when my classes would begin MRS.TRAVIS had told me that the papers could no longer work they were expired. I Don't think this is fair because My condition is not going to change in THREE MONTHS its going to be the same for the rest of my life and No matter how hard I try to explain this to someone they just don't understand.

my friend is in process of setting up a foundation for kids living with RA and making their dreams come true.

emily olstade — Mon, 07 Sep 2009 15:57:01 GMT

His name is Jeffrey Gottfurcht and his foundation site is at www.jgcaf.org
THey are in process of getting set up, and once they are, which will be in a few weeks, they will begin to take applications to make wishes and dreams of children with JRA and other auto-immune diseases come true. Just like the make a wish foundation for terminal kids, but for kids who are living with RA. The age requirement stops at age 18, sorry for those who are older. Soon the site will be amazing, as right now it is just a homepage, and it iis under construction right now, and we look forward to being "live" soon.

Jeff has RA himself and is 36, and thought that this was his way, to give back to children, who the public have forgotten, and have no idea how bad RA and the other auto-immune diseases are. Once live, you will be able to make a wish, if it is meeting a movie star, going to a pro game of some sort, meeting a sport star, getting a make over, having a cheer section at a sporting event, going on a trip somewhere, whatever it may be, they will be picking a few month, and making them come true. Of course some they might not be able to do, but they are going to try. We will include the whole immediate family, so the whole event can be enjoyed by all. As i mentioned the site it not "live" yet, but it will be soon.

We are just trying to now get some feedback, and get lined up our first kids to make their dreams come true. Please let us know your thoughts and ideas either through this site, or you can email jeff himself. jeff@jgcaf.org
Please let us know if you would be interested in applying in the future and we need your help, because without you kids, we wont have any kids to make their dreams and wishes come true.

Your ideas are important, as this is really for you, to make your dreams and wishes come true.
Please give us some feedback, good or bad, so we can make this as great as possible. Any thoughts would be great.
Thanks.

I'm so thankful for this forum!

LaurenisFabulous — Sun, 16 Aug 2009 04:14:10 GMT

Hey! My name is Lauren and I just joined this site. I'm 20 years old with psoriatic arthritis... and it's been getting pretty painful. I'm sure a lot of you know how isolating it can feel as a young person struggling with something most peers don't understand, so reading all the forums here has been nice!

To tell the longer story...I've only been diagnosed for a little over a year and have really had it only for 3 or so years, but it's just getting worse and worse. I go to college pretty far from my my hometown... so now I'm in an awkward summer period where I don't have a rheumatologist to see here in my hometown, but I really need to up my medicine regimen. Silly me, I put of the deicision to add on new medicine my doctor wanted to prescribe me because, after going through a pretty bad thyroid disorder in high school and having to be on lots of meds for a period of time, I try to stay away from as many as possible. But now I'm just stuck in this weird period of time where I can't even see my normal rheumatologist for another month or so. So... I've been feeling a lot more pain and a lot more stiffness and a LOT more fatigue than I'm used to, and it's so hard being so young and generally healthy... but being so limited by this one thing. Sometimes, I can't turn door knobs or turn on sinks... and things like bowling or opening jars or using a can opener are certainly things of the past. My friends are great and really supportive, and listen to and pray for me... but I still feel kind of alone, despite all my friends and family, when I'm in so much pain, or so tired, and feel just generally weak or stiff or uncomfortable.

But... that's probably nothing new for most of you folks on here! It's so nice to read posts about symptoms that I so know, and know that pther people really understand what I'm going through. The stories of those who have to quit school or work really touches me and encourages me to be more thankful that my arthritis isn't so severe and that I can still do the things that I can, praise God!

My prayers will be with you all, and thank you for sharing what you have in this whole forum!!

Pregnancy & JRA

Megan Female — Thu, 21 May 2009 19:22:00 GMT

Hello everyone! My name is Megan I am 23 years old and was diagnosed with polyarticular JRA at age 2 this is my first time coming to this site but I need some advice. I am actually having a baby in August and before getting pregnant I researched the effects of pregnancy on people with RA. I found that most sites said that my JRA should go away during pregnancy. Now at 30 weeks pregnant I still have swollen joints although its not as bad as I thought considering im not on any meds and have gained 20 pounds I still didnt know if anyone has experienced having arthritis symptoms throughout pregnancy despite the advice that RA should go away. Also, the more I research about having a baby I feel that there is a strong bias for mothers to breastfeed. I was not sure what to do because my rhumatologist said RA gets much worse afterward so I dont know if I should breastfeed and not go on my meds because its better for the baby or if I should do what is better for me and bottlefeed so that I may start taking my medications after delivery.. any advice? :unsure:

Juvenile Arthritis Month

Amy Domestico — Wed, 15 Jul 2009 16:41:28 GMT

Discuss Juvenile Arthritis Month with author and spokesperson Kelly Rouba, arthritis survivor Shaun-Marie Robbins, and Helene Belisle, Executive Director for the Arthritis National Research Foundation. http://budurl.com/Juvarthritis

Hi new to the site

Roger Mitchell — Sun, 05 Jul 2009 21:42:21 GMT

Hello everyone just found this site today, I am feeling a little better reading everyone's story felt alone with this thing. Here is my story. I am 37 years old an Army vet, but now I work with the US postal Service. I was diagnosed with RA about two and a half years ago. Still do not have meds that work. Started with Metho and Prednisone. My live could not handle the Metho. Than I switched to Plaqunill, and Areva I was having memory issues that scared the living crap out of me, my Rhematologist said it was the Plaqunill. I am hoping to start Humaria soon, but I am TB positive so the doctors at VA is treating that for now. The Ariva by itself does not do any good so I came off of that. It has been 9 months since I have had meds. I have a lot of stiffness and swelling, but just do my best to get through the day. I have a wonderful wife and two kids ages 10 and 6. Not much else to say its just nice to hear from people who know what I am talking about.

Roger Mitchell

camp

~ashiemae~15~ — Thu, 02 Jul 2009 10:12:37 GMT

I was just woundering if any of you went to camp befor

Im going to camp for frist time in ohio and im kinda nervouse If you went to camp how was your experence?

and could you all help me with like list of what to pack?

camp for me is between the 19-24 of july

Thanks

Ashley

Advice on Jones fracture and ankle fusion

Jen Roth — Sun, 21 Jun 2009 16:49:15 GMT

Hello,

I am new to this group, and am looking to see if anyone out there has gone through an ankle fusion and/or had a Jones fracture? I am 39 years old, and was diagnosed with JRA when I was 9 (wow, where does the time go?). I broke my foot in February and after 5 months finally saw a specialist who said that I have a Jones fracture which requires a screw and bone graph to repair. However, because of the damage to my left ankle due to 30 years of arthritis, he would need to fuse my ankle to straighten it. If he doesn't, then I will likely fracture my foot in the same place again. I've had bilateral hip replacements, an elbow and a shoulder replacement all with outstanding results. But ankle fusion and foot fractures are new territory for me. Has anyone gone through anything like this and do you have any advice for me?

I am so glad I found others!

Stacy Kannenberg — Mon, 18 Aug 2008 20:26:13 GMT

I was just recently diagnosed with RA in my feet, ankles, knee, and hand [yes, singular. wierd i know]. However, its rapidly spreading to other parts of my body. I just turned 22 a couple weeks ago. I've had active RA for about 3 years now, and I still haven't gotten any treatments due to lack of insurance. Its annoying. I'm having a very hard time getting doctors to give me anything for it, even with the walmart $4 list. I was taking aleve in massive quantities, to allow me to get through the day, but its caused kidney problems and now I'm off of it. So therefore, I am stuck at home on the couch still in pain.

Basically, no one wants to give me anything for it because they want me to see a rhematologist. I've been waiting for about 2 months to get into see the only one I can get any assistance in paying for since i have no insurance. i'm sick, and tired all the time. i'm sore and it hurts to move an inch. im sure you all know this. i spend most of my time sobbing because my family doesn't understand and expects me to do what they can do. like take the garbage out, do the dishes, get a job, etc.

i quit my job, which was a desk job, because getting up and down triggered the RA in my knee. Its too hard to do anything now, i can't concentrate on anything but the pain. I go to school full time. I barely made it around last semester, and i was taking about 30 aleve a day then. For some reason, they told me to take 4 Tylenol a day. Like that will do anything. I'm very worried about how i'm actually going to GET to classes and then once i'm there how i'm going to get anything out of it because im sure all i'll here is my body cursing at me for moving.

I was reading through some of everyone's experiences and comments on each other's posts. It never occured to me to come to a place like this and find people who have the same exact experiences that I do. Reading some of the things everyone is complaining about makes me feel better about complaining. LOL.

My friend's aren't understanding like many of you have said. Basically, I have no friends other than the ones I talk to here on the computer. They don't understand that walking to the bathroom is a challenge for me. Its like, I can't go to the movies. That means like 10 miles from the car to the theater including the standing in line. Well, it seems 10 miles to me. The mall is out of the question, grocery shopping is a nightmare. I don't move if I don't have to. That's the definition of my life.

I feel like this disease has taken over my life. I refuse to let it take school from me - the only thing I've ever worked to get in my life. I'm there, and eating my joints isn't going to stop me. Watch me! lol

Its put a financial strain on me too. Not working means no money. No money means credit card debt. I've got to eat and pay for these doctors who aren't doing anything for me. I'm going to apply for disability next month after actually getting to the doctor and getting treatments. I'm extremely nervous that I won't get it because of my age. I just got denied food stamps and the medical card because...i'm a student. no joke.

anyway...i've babbled on and on. its extremely comforting to have found a place where others are just like me. have a great week everyone!

No one understands...being an artist with JRA

pollielobster — Tue, 15 May 2007 23:20:51 GMT

*sigh*

I'm a newbie to the forums and whatnot. I'm glad I stumbled upon this site. I can make many friends who know what I'm going through. My name is Lydia. I'm 23, and an animator at an art school. Currently I'm in Savannah, but I'm from Va.
I have many friends, but none of them understand why I wear braces to class, or why I draw even if my wrists hurt, or its hard to hold the pencil/mouse. I think most of time, they get annoyed from having to wait up for me all the time walking at my pace, or that I cant do everything they do. And its not like it was alway like that. Even though I've had this since I was 11, it didnt seriously flare up all the time until I was in my junior year of college. So they knew me before it was bad, and I'm getting sick of them complaining that arthritis isnt for young people, and for me to stop making excuses all the time.
I dont give up, things may be hard now, but I'm still trying my best. Doesnt that matter? I'm sorry...

I just want to talk with others, make friends. Friends that wont try to take advantage me because I have no grip so I cant defend myself. People that will accept me, we can take, and hang out no matter what.
I hope joining this forum will bring me that. I cant get any of that from home, and the only friends that do are states away.

Is that okay with anyone here? I'd love to get to know all of you if I can. Hope all of yall have a great week! Cheers!

Lydia
pollie_lobster@yahoo.com

Hi, mom of a teen jra'r that needs advice from those who've been there

bbkroo — Mon, 30 Mar 2009 14:29:46 GMT

I have a 15 yo with Poly Jra. He has been on MTX and relafen for about 4 years now and is pretty well controlled.

He just started telling me he does not want to take his meds anymore. He says he is tired of giving himself shots, tired of going to the doctor, and tired of getting blood test. I have ra and I get how he feels to a point, but I can't understand how he can look back to how he did feel and how he is doing and still want to stop his meds. He says he doesn't care if it hurts. He sees his rheumy on Friday so we will discuss it with her but just wanted to know if anyone has been through simular feelings. Anyone stop there meds? and what was the result? He is doing well and part of me feels like maybe since we are headed into summer which is usually a good time for him, he could try tapering down and see if he does okay. The other part of me feels like we could ruin all the progress we have made and that his current meds may not solve the problem should he flare and he would then have to go to biologics which we might avoid if he sticks to his program.

I feel really stressed out about this and would appreciate any stories shared;)

Thanks,

Pam

Hip replacement

abyfromgreece — Mon, 23 Mar 2009 14:49:21 GMT

Hello all of you!
I am looking for a young person who has had a hip replacement surgery to talk to me about this! Muy daughter is 26 and is going to have such a surgery soon! She ise very strong but I think that in this phase she needs some encouragement, specially from someone goung!
Please, if you can help with your advice write to me
abyfromgreece

hands...and texting help

~ashiemae~15~ — Mon, 06 Apr 2009 11:05:10 GMT

okay you guys will problie laught but...

I need help figuring out how to texts when my hands are in alot pain i figurd way to type with hiting one key at time with penicel but i need something to help me text lol sounds crazy but thous that texts alot help pls

and if it helps i have the slider phone but i need to text.texting is how i talk to my peeps.but my hands dont wanta allow me to text right now

Ashley

New to the forums. Hello, everyone!

Alex Milstead — Fri, 27 Feb 2009 11:44:33 GMT

Hi everyone. I'll take this opportunity to introduce myself. My name is Alex Milstead, I am 20 years old and I live in Atlanta, Georgia. I am currently a junior at the Georgia Institute of Technology, majoring in Computer Science. I came from basically a classical podunk high school with little opportunity for advanced education, so being accepted into Tech was a tremendous achievement. I'm the first student from my school to have attended Georgia Tech in the last 8 years. I'm also currently a part of a Co-Op program at Tech, where I alternate semesters taking classes or working full-time for the Research Institute here.

I was diagnosed with early-onset (juvenile?) Rheumatoid Arthritis in late August of last year (2008). I first started noticing that something was a little off around the Fall 2007 School Semester when I woke up one morning and the middle joint on my right ring finger was swollen. I passed it off as maybe a dislocated joint or though maybe I'd cracked my knuckle too hard or something and let it go for a couple of months, after that time, the swelling hadn't subsided. I decided it would be best to get it checked out, so I went a MedCheck center near my home in Athens. The physician there told me that it was a simple "calcium buildup" and if I started on some alieve it should go down. Well, it never did. At the time I was exercising quite regularly (just out of high school, I used to play soccer and run cross country) and I found that it helped greatly with the swelling.

Unfortunately, however, one morning last summer, I woke up to discover another one of my middle joints felt really stiff. I got pretty worried and got my Mother to take me to an Orthopedic Physician. After speaking with that doctor, I was referred to a Rheumatologist in Athens. After hearing my story, he immediately ordered some standard labs (RF Factor, most importantly) and for the most part everything came back looking okay. It looked like I probably didn't have RA. He originally diagnosed me with Reiter's Arthritis because of (at the time) the lack of symmetrical joint stiffness, the small number of affected joints, and the missing RF factor. I was prescribed Plaquenil, Sulfasalazine, Naproxen and some intense vitamin D supplements. I found that these medications didn't really help my pain very much. Not long after, I went to visit my Dad for a Holiday, and I had my first flareup. It was intense, to say the least. It affected my shoulders, wrists, elbows, pads of my feet and even my jaw. After this bad episode, I went back to my Rheumatologist and told him about what happened. After a few minutes of questioning, I finally asked if it could be RA. He seemed to be sure it wasn't and that it was just a bad episode, but after questioning him a bit further on the best ways to check for RA (since I didn't have the RF factor) he mentioned the anti-CCP count. According to him, it isn't a very sensitive test, but when major results come back, it's pretty much a "slam dunk" that you've got RA. So we did the anti-CCP, and boom, there it was. Staring me in the face, my result was off the charts. I had RA.

He changed the official diagnosis, and began treating me with methotrexte, and removed the plaquenil. After a while (and some unfortunate personal circumstances) it wasn't in my best interest to go all the way back to Athens from Atlanta every time I needed to see my Rheumy, so I switch doctors to a gal at the Emory Rheumatology Clinic here in Atlanta. Since seeing her, I've dropped all of the other drugs (except methotrexate) and picked up Enbrel. I must say it has definitely been a more than fair trade. The stiffness in my joints is, for the most part, only in one of my wrists and my right ring finger. The only downside is the immuno-suppressant effects of these drugs and the fact that methotrexate is, by nature, a liver toxin. I find myself getting colds much more often now, and the colds themselves last at least twice as long as the used to.

I'm only 20 years old, and I feel so unhappy with the way things have turned out. Sometimes I still can't believe that it all went down the way it did, and that at the end of the day I've got this incredibly terrible disease that affects me the way it does. Admittedly, I'm feeling much better than I used to, but it's still so hard to deal with. I have a terrible affliction that is going to effect me for the [i]rest of my life[/i]. I'm going to be sticking a sure-click needle in my thigh once a week for as long as I live. I'm turning 21 in April and according to my doctor I won't even be able to have more than a single drink.

I used to be so athletic. I was in great shape, I didn't drink, didn't smoke, none of that. And now all I want to do is find the next best way to distract or alleviate all of the stress I go through everyday. Not only is this one of the more difficult places to exist in academia, I've got this awful disease that just makes the stress sky-rocket.

I guess part of the last bit of this post was to explain the way I feel, and maybe ask some of you how you deal with this craziness? So far, I seem to just chin up, put on a hard face and ignore the fact that I have RA. Sure, I keep taking the medicine and all that, but it's just become rote rehearsal now. I can't seem to find a way to not feel bad about effectively knowing my fate.

How do you guys keep your hopes up and avoid letting arthritis pull you down?

Forum Needs Some Juice?

Andrew227 — Wed, 25 Feb 2009 02:19:53 GMT

Hey everyone,

I posted the survey request earlier today and was just checking back into the forum this evening. In looking at the frequency of posts of responses, I realized that there does not seem to be much activity here which was a little sad.

It is difficult being a young/younger person with arthritis and finding a place to communicate with others in the same age group. I would encourage those of you using this forum to share more frequently and openly about what is going on with your journey... it helps tremendously. Maybe many of you are on RA connect but I hope to see more activity here in the future. :)

cheers,

Andrew

Andrew's Follow-Up Survey

Andrew227 — Tue, 03 Mar 2009 23:32:43 GMT

[size=3]Hello everyone!

Some of you may have taken my first survey and I appreciate it immensely. I have made a follow up survey and am hoping that you can take a few minutes to answer the questions at the following link:[/size]

[url=http://kellogg.qualtrics.com/SE?SID=SV_broh96OFIV5QRrC&SVID=Prod][size=4]RA Follow-Up Survey[/size][/url]

[size=3]I am working to collect data from RA patients (of which I am one, diagnosed at 29) which can then be turned into valuable feedback for start-up companies looking to develop therapies, diagnostics and online tools for those of us with auto-immune diseases.

I hope that you might have a little bit of time to contribute to this survey![/size]

[size=3]Andrew[/size]

what does my future look like??

Daniel Alicea-Munoz — Wed, 04 Feb 2009 00:34:41 GMT

I am a director at a nursing home, and since i started in May, I have not been able to stop wondering what JRA develops into...?? we take tons of meds, each med has its own long term effects, the JRA takes its toll on our body in so many ways, our immune system is steadily compromised...what are some common longterm ailments associated with JRA? I have decided that I will probably die of liver cancer, thanks to the medications...

Arsenal fans with Arthritis?

Karen Billington — Wed, 21 Jan 2009 12:32:10 GMT

Hi there,

This is a random request….I’m from Sparks Children’s charity and we fund research into Juvenile Arthritis and run a project called Charms which helps children suffering from Arthritis administer medicine properly.

We are currently looking for children in the North London area who may want to help us with a charity pitch. Ideally they must be football fans.

Can you help at all? Please email me on karen@sparks.org.uk

Many thanks,

Karen

Hip replacement

abyfromgreece — Sun, 07 Sep 2008 10:22:53 GMT

Hello all of you.
My daughter -now 25 years old- is suffering from rheumatoid arthritis since the age of 3. For the last seven years she is being has been treated with Remicade, Humira and now Enbrel. She is living a perfectly normal life and she is rather well most of the time, but a hip X ray has shown that she will soon (?) need a hip replacement. Has anyone has a similar experience from such an operation to such a young person?
I d appreciate any help or any idea
Thanks in advance
abyfromgreece

Hi, Im Aaron....

Aaron1 — Wed, 13 Dec 2006 19:48:15 GMT

Greetings! I shall try to be breif as I tend to ramble!!!! My name is aaron, I am 35 years old and have had JRA since I was 6 months old (I was diagnosed at one year of age). I have JRA pretty severe, and have been wheelchair dependent since I was 8.
Today, I have my struggles (physically, mentally, and sometimes spiritually. But, for the most part all is cool. I went to college and earned my certification in personal training and a second certification in sports nutrition. I was also accepted into one of the top percussion schools in the country! (Yes I am a rock/metal drummer!) I was even the 1980 poster child for the AF, and have been featured on several AF telethons!!!!
I recently began teaching (I do the fitness/exercise and nutriyion component) in the "Taking Control with Arthritis" class offered by the arthritis foundation.
I signed onto this site/message board in hopes of making friends in my age group and to try to help anyone who is newly diagnosed or in their first childhood! If you'd like to contact me, my email address is
a.mathews@adelphia.net and my phone number is 315-796-7862....
peace,
aaron

Shots in the knees

Lizette450 — Fri, 03 Nov 2006 18:15:21 GMT

Hi Everyone!

Sorry I haven't posted in a while. Haven't been feeling to well. I went to see my rheumatoglist yesterday and I was told I need to get shots for my knees. I am going to the hospital on Wednesday to get them done. My question to you guys is is a steriod shot? She told me she would explain it to me at the hospital before I get it done.

Thanks for your support.

Starting A Young Adult Support Group

Nothing But A Rag Doll — Mon, 02 Jun 2008 22:05:59 GMT

My name is Nicolasa people call me Nikki for short. Im 18 years old and ive been diagosed with Hyper Mobility Arthropathy, Reynards Syndrome, Vasculitis, Vaso Depressent Syncope, and Sjogrens Syndrome. Ive been "battleing" with this for 4 years now, an unexpected twist in my life. I never saw it coming. In those 4 years besides my diagoses ive been through surgery for Appendisitis, and Pylonidal Cyst removal. Ive also been home schooled for half of my Junior year and half of my senior year. So most of the friends i did have ive lost all contact with. Im very alone. The few friends i do still have just don't understand what im going through. It has been a rough process. Depression has over come me.Ive tried many things to try to deal with this "curse", But im looking for support. I know im not the only one. And i know there are many out there who need that support like i need the support. But theres no young adult support groups in my area. So i am setting out to start a young adult support group for youth in my area for those out there looking for support or that can help me in my quest to help myself and others deal. I am in the Buffalo,NY area. Im looking for those who would like to join me.

I can be contacted on aim- LoveIsMisery18
or emailed-
Prprincessnia@aol.com

I NEED SOME ADVICE WHAT TYPE OF MEDICATION SHOULD I TAKE

Jaime A — Sun, 18 Jan 2009 14:01:59 GMT

IM A TEENAGER WHO HAD LYME DISEASE AND NOW HAS ARTHRITIS.

I HAVE BEEN TAKEING MEDICATION FOR A MONTH AND IM GOING BACK TO THE DOCTOR THIS WEEK

I CAN EITHER STAY ON THE MEDICATION OR GET A SHOT. IM SO SCARED AND I NEED SOME ADVICE!

a video pls read this

~ashiemae~15~ — Sat, 03 Jan 2009 22:40:37 GMT

Hey guys

i am trying to make a video for to show awarness of jra
and i want to like show some pics of real ppl strugling with this ilness

this is wat i have so far

http://www.youtube.com/watch?v=rxRiub9vMpM

i know i need to still add some kind of song to but just dont know wat song if you have sujestens pls tell me

hugs
ashley age ~~~14

hi everyone im new here

zenab71 — Sun, 23 Nov 2008 15:05:20 GMT

hello everyone.

my name is zenab and im 20 yrs old and i was diagnosed with anklosing spondylitis its arthritis in the spine when i was 16. i live in london.

ive been off college since march 2007 and i cant study this year too. i feel so ill alll the time.my arthritis has been really bad for a year now. i have horrable pain all the time its so hard to cope wih it.

my drs have never been that helpful. thay wont put me on anything stronger other then the nomal anti inflamtrys that ive been on for 4 yrs thay help a bit but its not enoth for me to be able to cope with everyday life. i use a wheerchair most of the time. ive had 2 bone scans and it showed that i had inflamation in my spine and a year later it showed more inflamtion in my spine and it had spead to all my other joints. its still like that now.

but my drs still wont do anything.

since i was born ive had problems since then,as i was born 3 mouths early so i wear glasses and ive had lots of operations on my eyes and eyes.

when i was 6 i started growth horman injections as tests showed that i was not podcing enoth growth horman to help me grow. so when i was 6 i started having injections everyday and when i was 14 i stoped it as i had grown my full height.

Growth Hormone Deficiency (GHD) is generally due to the pituitary gland being unable to produce sufficient GH to generate the growth process. GHD does not affect intrauterine growth, at least to an extent measurable by birth weight or length, but from the second year of life growth is slower than normal and occasionally growth failure commences from birth. Most cases of growth hormone deficiency are idiopathic, meaning of unknown origin. Idiopathic growth hormone deficiency occurs, it seems, in about 1 in 3800 births.
GHD may also be hereditary, at least in some cases. About 3% of children with GHD have brothers or sisters who also have the disorder. In a very few families one of the parents is affected. The deficiency is two to three times more common in boys than in girls, for reasons quite unknown
Children with GHD are small with normal skeletal proportions, facial appearance and intelligence. They tend to be overweight (this reduces during GH treatment) and they often have a delayed bone age. The diagnosis is confirmed by measuring the level of growth hormone production in response to a stimulation test which normally requires a morning in hospital. The deficiency may be of growth hormone only, although other pituitary hormones may also be affected (MPHD). The associated hormone deficiencies are:

* thyroid-stimulating hormone (TSH)
* the gonadotrophins - follicle stimulating hormone (FSH) and lutenising hormone (LH)
* adrenal-stimulating hormone (ACTH) is much less frequently involved, but the deficiency of this hormone is extremely important to detect.

and when i was 14 thats when i started getting a lot of joint pains. after doing a lot of research me and my mum find out that same people who stop having growth horman start getting joint pain so i went to my drs who i see for my PCOS. and i told them and thay said to do a test where thay put my body under stress.

The diagnosis is confirmed by measuring the level of growth hormone production in response to a stimulation test which normally requires a morning in hospital.

i got the results in march 2008 and it showed that im still not podcing enoth growth horman. so my drs desided to put me back on growth horman again. it wont make me grow but growth horman is needed to help with everyday health and to fight infections.

i wated a long time for finding. i started 1 mouth ago. my blood tests show that it has not made a difference yet and i need to have more meds.

even no i had it when i was younger its very diffent this time as im older and i understand about the meds and the possably side effects. so im more worred now.

i hope that it will help me fight nomal infections and help with my everyday health. it mite make my bones stronger so thay are stronger to cope with the arthritis in the spine and joints.

this is a long messege i just would love to talk to other young people going thou what im going thou if anyone would like to chat my email is zenabshah@hotmail.com

ive made a lot of groups for young people with arthritis on facebook,bebo,myspace,daliy strenth i hope u all like them

http://www.facebook.com/friends/#/group.php?gid=20939036561
http://groups.myspace.com/youngpeoplewitharthritis
http://www.bebo.com/youngarthritisgroup
http://dailystrength.org/groups/youngpeoplewitharthritis

at the moment i am trying to set up a group in the london area for young people with arthritis. aged 16-25 yrs. 1 group would be a group and the other would be us all going out togather being like every other young person out there. so far 4 ppl are going to came when its set up. i dont know if theres many people on here from the uk but if there are if u would like to came plz email me on zenabshah@hotmail.com

ANYONE IN NEW ENGLAND AREA?

Sarah Female — Wed, 12 Nov 2008 12:39:15 GMT

HELLO. I'm new to the forums, site etc.

I am graduating this May with a BA (Bachelors) in entrepreneurial studies and a BFA (Bachelor of Fine Arts), both in photography. For my BFA show I decided to do sort of a self-portrait project about arthritis. I got diagnosed in 2003 when I was 16, and to be honest, I haven't met many people my age with the disease.

I need photo subjects, and I'm looking for all ages but I think that it might be harder to find young adults like myself or even younger--(I'm not excluding older people, I will be doing anyone of any ages..I'm just targeting what I think may be a harder group at this point...) It shows the viewers it can happen to anyone of any age.

I'm willing to travel, I'm in Maine close to NH... and I want all different kinds of people who are willing to let me take their photos. This could include full portraits, close ups of hands or joints and living spaces that may have anything to do with how you live your life.

Fortunate for me, I dont have any signs of arthritis physically, I move fine when on meds and my joints all look normal. Thats why I want to go beyond just me, and have others and how they live their lives put on film/camera. This project will ultimately be combined to be put up as a show at the beginning of April.

If you live somewhat close by and would like to participate, email is probably the best way to get a hold of me.
sarah.reece@maine.edu

I will try to get back to this forum to try to recruit some more later on. THANK YOU.

OT - any gamers out there?

Pinkie — Tue, 25 Nov 2008 13:02:09 GMT

[font=Comic Sans MS][size=3]I have to do the proud MOM thing, my daughter has designed some t-shirts for gamers and they are now on sale.

gamedar.net

Hope you all are doing ok & managing your RA. I'm gearing up to go back on MTX. :-(

Take care & have a wonderful Thanksgiving.

[/font][/size]

young people with arthritis group in london

zenab71 — Mon, 24 Nov 2008 12:43:16 GMT

hi everyone. my name is zenab and im 20 yrs old and i was diagnosed with anklosing spondylitis its arthritis in the spine when i was 16. i live in london.

i write another message on here but whats been happening with my life and having arthritis. would love same advice on that messege.

at the moment i am trying to set up a group in the london area for young people warthritis. aged 16-25 yrs. 1 group would be a group and the other would be us all going out togather being like every other young person out there. so far 4 ppl are going to came when its set up. i dont know if theres many people on here from the uk but if there are if u would like to came to my goup plz email me on zenabshah@hotmail.com

ive made a lot of groups for young people with arthritis on facebook,bebo,myspace,daliy strenth i hope u all like them

http://www.facebook.com/friends/#/group.php?gid=20939036561
http://groups.myspace.com/youngpeoplewitharthritis
http://www.bebo.com/youngarthritisgroup
http://dailystrength.org/groups/youngpeoplewitharthritis