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Discussion in 'The Okie Corral' started by vote Republican, Jan 13, 2010.
Does anyone here have any personal experience with this that they can share?
Yes, it's the end result of parents who allow their children to suck down a six pack of soda on a daily basis. There are tens of thousands of teens now who have it, and the biggest reason is Mr. Mountain Dew and his friends !
They thought I had it, but it turned out to be Lyme-Arthritis.
Nonsense. The man asked a serious question.
I can say with great certainty that this is far from the case here. I developed arthritis at the ripe old age of 14 and "Mr. Mountain Dew and his friends" had nothing to do with it.
VR is asking specifically about Juvenile Rheumatoid Arthritis. So if anyone has anything helpful to share, I'm sure it would be appreciated.
My sister was diagnosed at 2. I was diagnosed at 12. We're now 26 and 29, respectively. What would you like to know?
i crashed my bike ten months or so ago. now my knuckles on my right hand ache when i bend them, also hurt when i try and grab something heavy like a huge bag or matress... almost like a stabbing, is that athrits?
I know a lot about it. Rather than ask for people's experience, which may or may not be current, consult a rheumatologist. If you live near a large medical center there may be an actual pediatric rheumatologist. Another reason for not asking questions here is that there are at least 4 different types of JRA; so one person's experience may not apply to the situation you are asking about.
I developed an arthritis-related illness just after turning 17. Long story short, the docs at Georgetown University Hospital diagnosed me and set me on the right treatment plan. Before diagnosis, I could barely move without it hurting. I couldn't even turn over in bed without pain. It kind of came upon me gradually; I started feeling ill on Halloween and reached my low point on February 5. It was all a downward slope in between.
A great rheumatologist is a must. I have been with mine for nearly 13 years and she's always steered me right.
The question is specifically about Juvenile Idiopathic Arthritis (meaning they don't know the actual cause). The reason he asked about personal experiences is to see how it's affected (or not) other people's lives/careers, etc. Obviously it's different for everyone, so it's a general question. Not looking for medical advice.
*1 to what sierra9 said.....
Can't speak specifically from the juvenile aspect of the affliction....but I have it, my Dad had it, his Dad had it....and HIS Dad before him!!!
If nothing else, it seems evident that the disease is at least in some way genetic...It's been bantered around that the high-fat diet of our ancestors was a prime contributing factor to arthritis; however, folks today who eat a "heart-healthy" diet still can experience chronic pain and degeneration from this disease...
Sorry I can't shed more light on your specific situation....a specialist is probably your best source of information....Good Luck!
Oddly enough, I developed arthritis in my fingers at the same age...at the same time, the streak of gray in my hair started.
As far as JRA, no, I have no experience with that. Sorry, VR.
As a kid, I frequently carried my sister around the house and the neighborhood to the different places we played when she was too stiff to walk. I'm 2½ years older and I have size on my side. She's always been skinny and it's not unusual for her knees, even now, to swell wider than her calves or thighs. I've always been big but broad-shouldered and muscular as well.
Mine started as my left knee just randomly giving out. I wasn't even swolen or stiff when I was diagnosed but for several years I went through hell with mine. At times, it's spread to my right knee, ankles, jaws, back and neck.
We ran the full gamut of meds, from Naprosyn, a basic anti-inflamatory, to Methotrexate, a powerful cancer drug. The things I tried had myriad side effects: nausea, hunger, depression, insomnia, etc. I never wanted to take meds. For years, about every 6 months I would get the fluid drained followed by a cortisone injection. The procedure was painful but it was better than dealing daily with side effects from the pills. Finally, when the injections had to come less than 3 months apart, I had to go back on meds.
My sister was much, much worse. She spent a lengthy period on IVIG treatments. Everything made her sick - going swimming, going to school, going to the grocery store with Ma. Her immune system was just dead.
We both were regulars on a first-name basis with his staff at our local CHKD. We had a brilliant and caring rheumatologist who gave us incredible support and care throughout our childhood. Somewhere along the way we each got older and got our own insurance and moved to a new doctor a family member recommended.
In the late 90s, while we were still at CHKD, we kept hearing about a new drug that was in the works that had to be injected weekly. When it came out, our lives became much more normal. It's called Enbrel and, to us, it's the most amazing thing ever invented. It's a synthetic protein that blocks your immune system from attacking your otherwise healthy body, which is what's happening with arthritis, psoriasis and other autoimmune diseases.
We take Enbrel between once a week and once a month. That's not the prescribed dosage, but it sucks to give yourself a shot and our joints tell us immediately when it's time for more. As adults, we still go to the same rheumatologist. I get regular X-rays and they show that despite the amount of time I've been afflicted and despite the severity of my disease, my joints haven't worsened in the 8 years I've been with my current doctor.
Also, it's very unusual for two or more siblings of the same parents to both have arthritis. They are called sibling pairs, or sib-pairs, and the last number I heard was that there were only about 300 of us in the whole country.
I grew up to be a carpenter that rides an ATV every chance he gets. She works at a big box home improvement store wrestling appliances around and standing on concrete all day. In other words, thanks to Enbrel, we've been able to lead very active and perfectly normal lives.
Kevin,thank you so much.
Has it affected my life and career? Yeah. I couldn't attend the service academies I was nominated to. I can't serve in many jobs overseas due to lack of medical care. I have to be careful about a lot of things.
Has it prevented me from living a normal life? No, because I refuse to let it. The key is, I have the illness, the illness does not have me. A lot of it is about attitude. Even when I physically can't do something, I keep my attitude up because that is what I can control.
I am guessing that this poster read juvenile diabetes rather than arthritis.
I will add that even under the best or circumstances there's good days and bad days. Enbrel is too new for all the side effects to be fully known. It does slightly raise your risk for infection so if you get an infection, if you're going to have surgery or if you need to get a vaccine, you have do discontinue use of Enbrel for a period of time.
I will also add that when arthritis flares it's usually systemic and things that aren't problematic can become so. For me, mine being psoriatic arthritis, my otherwise mundane spots - a dime-sized spot on my right knee and a AAA-battery-sized spot on my right wrist - get much worse with a flare as well. Also arthritis can cause fatigue so flares can really take the wind out of your sails.
It's definitely something you can learn to live with, however, if you are getting proper treatment.
Feel free to PM me at any time if you have more questions!