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Alright, i'm 16, I just got  diagnosed with polyarticular onset juvinile rheumatoid arthritis. I just don't know what to do NEXT.

i'm on naproxen right now, which helps. but not really enough.i dont want to have to feel this way all the time. even on naproxen.

My specialist wants me to go on methotrexate.I've heard from people to not take methotrexate, to try and get into remission other natural ways with herbal remedies. But i've heard from people methotrexate really works, and if i get started now, and get into remission, it will help my chances of letting any damage happen to my body.

So is it worth it? Or can I REALLY truely get into remission with other natural ways? It sounds a bit immature, but if methotrexate will help me feel better, faster.....then i rather take that. I am 16. My life has been taken away long enough. I just want to feel okay again.

 

With whatever method you decide, it IS proven with JRA that the faster and more head on you hit this, the better chance you have at going into life long remission, or a very long remission. So I would suggest that if you are really toying with each idea, to do some hard hard research. Don't walk away with any questions, and then get moving, to get it under control.I feel for you and think that the advise above is good advise..
I have found that this board offers a lot of help to those that need it..
Best of health.

[QUOTE=arriscolwell]With whatever method you decide, it IS proven with JRA that the faster and more head on you hit this, the better chance you have at going into life long remission, or a very long remission. So I would suggest that if you are really toying with each idea, to do some hard hard research. Don't walk away with any questions, and then get moving, to get it under control.[/QUOTE]

ya, i mean, the second i got diagnosed, i went out, got a journal, went to a book store, and wrote down EVERYTHING ra related.

I know what it is. I know what foods can help reduce inflammation. I know what blood tests are being run on me. I know the side effects of methotrexate and i know how it can really put me into remission.

But my mom is INSANELY afraid of putting me on this. Shes researching everything she can, with other natural ways. And if  there is any hope to get into remission another way, she'll choose that.

On the other hand, shes not the one living with it. I am. So its kind of been hard with our conflicting ideas of whats best for me.

 

 

I understand that. My mom REFUSED to put me on MTX (methotrexate) She lucked out and that seems to have been the best move for us. But that's not the case for everyone. Find out what your doctors views on other medications are. You don't HAVE to do MTX first, its just the standard. Know what I mean? arriscolwell39366.7437152778 Thumbelina,

Whatever treatment you decide, also bear in mind that many of the DMARDs cause miscarriage or birth defects, and the biologics are too new to really know what they can do to a fetus yet.  So if you are sexually active now, or if you become sexually active while taking some of these treatments (which really can be MIRACLES!!!) do make sure that you are using adequate contraception.  You really don't want to have to deal with making that horrible choice, should something happen...

And no, I am not advocating that 16-year olds have sex... but if you do, BE CAREFUL!!!  It's not just a calorie-burning pastime... you could accidentally create someone. JasmineRain39366.7479166667

Thumbalina,

Doctor knows best. Most all the drugs have side effects but as most can attest to the side effects are livable and many are manageable (weight gain, fatigue, and some others) most bad effects happen to a very small percentage and are watched carefully by the medical profession and caught without harm. More harm is done when nothing is done. Hold on tight to your dreams. The cures are close, maybe as close as three years. Here is some good information. Welcome to the rollercoaster ride of your life. This is somewhat long but you will feel so much better and informed if you read this post completely.

LEV

Questions and Answers about Juvenile Rheumatoid Arthritis

What Is Arthritis?

Arthritis means "joint inflammation" and refers to a group of diseases that cause pain, swelling, stiffness, and loss of motion in the joints. "Arthritis" is often used as a more general term to refer to the more than 100 rheumatic diseases that may affect the joints but can also cause pain, swelling, and stiffness in other supporting structures of the body such as muscles, tendons, ligaments, and bones. Some rheumatic diseases can affect other parts of the body, including various internal organs. Children can develop almost all types of arthritis that affect adults, but the most common type that affects children is juvenile rheumatoid arthritis (JRA).

What Is Juvenile Rheumatoid Arthritis?

Juvenile rheumatoid arthritis is arthritis that causes joint inflammation and stiffness for more than 6 weeks in a child of 16 years of age or less. Inflammation causes redness, swelling, warmth, and soreness in the joints, although many children with JRA do not complain of joint pain. Any joint can be affected and inflammation may limit the mobility of affected joints. One type of JRA can also affect the internal organs. Doctors classify JRA into three types by the number of joints involved, the symptoms, and the presence or absence of certain antibodies found by a blood test. (Antibodies are special proteins made by the immune system.) These classifications help the doctor determine how the disease will progress and whether the internal organs or skin is affected.

What Causes Juvenile Rheumatoid Arthritis?

JRA is an autoimmune disorder, which means that the body mistakenly identifies some of its own cells and tissues as foreign. The immune system, which normally helps to fight off harmful, foreign substances such as bacteria or viruses, begins to attack healthy cells and tissues. The result is inflammation--marked by redness, heat, pain, and swelling. Doctors do not know why the immune system goes awry in children who develop JRA. Scientists suspect that it is a two-step process. First, something in a child's genetic makeup gives them a tendency to develop JRA; then an environmental factor, such as a virus, triggers the development of JRA.

What Are the Symptoms and Signs of Juvenile Rheumatoid Arthritis?

The most common symptom of all types of JRA is persistent joint swelling, pain, and stiffness that typically is worse in the morning or after a nap. The pain may limit movement of the affected joint although many children, especially younger ones, will not complain of pain. JRA commonly affects the knees and joints in the hands and feet. One of the earliest signs of JRA may be limping in the morning because of an affected knee. Besides joint symptoms, children with systemic JRA have a high fever and a light skin rash. The rash and fever may appear and disappear very quickly. Systemic JRA also may cause the lymph nodes located in the neck and other parts of the body to swell. In some cases (less than half), internal organs including the heart and, very rarely, the lungs may be involved.

Eye inflammation is a potentially severe complication that sometimes occurs in children with pauciarticular JRA. Eye diseases such as iritis and uveitis often are not present until some time after a child first develops JRA.

Typically, there are periods when the symptoms of JRA are better or disappear (remissions) and times when symptoms are worse (flare-ups). JRA is different in each child--some may have just one or two flare-ups and never have symptoms again, while others experience many flare-ups or even have symptoms that never go away.

Some children with JRA may have growth problems. Depending on the severity of the disease and the joints involved, growth in affected joints may be too fast or too slow, causing one leg or arm to be longer than the other. Overall growth may also be slowed. Doctors are exploring the use of growth hormones to treat this problem. JRA also may cause joints to grow unevenly or to one side.

How Is Juvenile Rheumatoid Arthritis Diagnosed?

Doctors usually suspect JRA, along with several other possible conditions, when they see children with persistent joint pain or swelling, unexplained skin rashes and fever, or swelling of lymph nodes or inflammation of internal organs. A diagnosis of JRA also is considered in children with an unexplained limp or excessive clumsiness.

No one test can be used to diagnose JRA. A doctor diagnoses JRA by carefully examining the patient and considering the patient's medical history, the results of laboratory tests, and x rays that help rule out other conditions.

Who Treats Juvenile Rheumatoid Arthritis?
What Are the Treatments?

The special expertise of rheumatologists in caring for patients with JRA is extremely valuable. Pediatric rheumatologists are trained in both pediatrics and rheumatology and are best equipped to deal with the complex problems of children with arthritis and other rheumatic diseases. However, there are very few such specialists, and some areas of the country have none at all. In such circumstances, a team approach involving the child's pediatrician and a rheumatologist with experience in both adult and pediatric rheumatic disease provides optimal care for children with arthritis. Other important members of the team include physical therapists and occupational therapists.

The main goals of treatment are to preserve a high level of physical and social functioning and maintain a good quality of life. To achieve these goals, doctors recommend treatments to reduce swelling; maintain full movement in the affected joints; relieve pain; and identify, treat, and prevent complications. Most children with JRA need medication and physical therapy to reach these goals.

Several types of medication are available to treat JRA:

* Brand names included in this booklet are provided as examples only, and their inclusion does not mean that these products are endorsed by the National Institutes of Health or any other Government agency. Also, if a particular brand name is not mentioned, this does not mean or imply that the product is unsatisfactory.

How Can the Family Help a Child Live Well With JRA?

JRA affects the entire family who must cope with the special challenges of this disease. JRA can strain a child's participation in social and after-school activities and make school work more difficult. There are several things that family members can do to help the child do well physically and emotionally.

Do Children With Juvenile Rheumatoid Arthritis Have To Limit Activities?

Although pain sometimes limits physical activity, exercise is important to reduce the symptoms of JRA and maintain function and range of motion of the joints. Most children with JRA can take part fully in physical activities and sports when their symptoms are under control. During a disease flare-up, however, the doctor may advise limiting certain activities depending on the joints involved. Once the flare-up is over, a child can start regular activities again.

Swimming is particularly useful because it uses many joints and muscles without putting weight on the joints. A doctor or physical therapist can recommend exercises and activities.

What Are Researchers Trying To Learn About Juvenile Rheumatoid Arthritis?

Scientists are investigating the possible causes of JRA. Researchers suspect that both genetic and environmental factors are involved in development of the disease and they are studying these factors in detail. To help explore the role of genetics, the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) has established a research registry for families in which two or more siblings have JRA. NIAMS also funds a Multipurpose Arthritis and Musculoskeletal Diseases Center (MAMDC) that specializes in research on pediatric rheumatic diseases including JRA.

The research registry for JRA is located at Children's Hospital Medical Center at the University of Cincinnati College of Medicine in Ohio. The registry, established in 1994, continues to list new cases as well as be maintained and systematically updated. The focus of the registry is on families whose brothers and sisters have JRA, with emphasis on genetic susceptibility in those affected families.

Researchers are continuing to try to improve existing treatments and find new medicines that will work better with fewer side effects. For example, researchers are studying the long-term effects of the use of methotrexate in children. In addition, the Food and Drug Administration's "Pediatric Rule" requires manufacturers of new drugs and biologic agents, such as etanercept, that will be commonly used for children to provide specific information about safe pediatric use.

haha, no worries there. still a virgin. i keep my legs clothed, lol. Not planning on changing that anytime soon, and especially if i'm on MTX.

I dont know whats best though. Its the standard, and I know it will be the first thing to do, and probably the quickest and most effective.....its just that getting pain to be gone is first on my list for me, and for my mom, whats going in my body is first for her.

Its difficult. Part of me is afraid im gonna go to my specialist again in 2 weeks and shes going to say i'll be fine on naproxen, and i'm gonna have to live like this for so much longer. Then the other part is afraid shes going to say,ok, time to start treatment...and i'm going to have to start that.

ugh. I start worrying at night time for some reason. I promise, I suck it up during the day, haha.

 

 

 

 

Thumbalina, I do want to say hi and welcome.  I totally agree with the advice Kate and Jaz has given you, and I guess I will add some "mom of a teenager" perspective, since they are too young for that. 

I am a mom of a teenager...just one year older than you(although my perspective would be a little different, b/c I HAVE the disease) It is completely overwhelming to look at your darling child that you brought into this world with all of the asperations that they would be the next nuclear scientist, and have the doc hand a dx like this.  Then to go home and look at these meds...that are scary and daunting at best....scary as sh*t at the worst.  Then you look at the beautiful daughter and say...I don't want my daughter to go through all that.  I can understand your reluctance, but you are right and this is YOUR disease.  YOu need to look at what your mom is trying to say, and then look at the damage page of the RA sights, and decide...do I want to play with this???  You also want to look at your pain level and see if you have time to play with this, b/c pain equals damage in a lot of respects.  Then you need to sit down with your mom, and lovingly tell her that this is the path that you would like to try.  Now will you have to change paths...probably...could you give what your mom wants to do a two to four month trial...probably.  In the end YOU need YOUR mom, and will for a long time.  YOu both really need to sit down and talk and to also talk to your RD about any path you choose.  Please don't turn this into a me against mom thing, b/c you will need her help and support and her unconditional love to make it through the next six months. 

Think about what I and others have said.  If I am all wrong...then just chuck the advise, but do know that moms hate for their kids to be sick, and maybe a compromise would help you the most at this point. 

Take care...shel

Hi Thumbalina, (cute name), I feel for you when you have had two different opinions. Yes methotrexate has some things about it that you would rather not deal with but it is also one of the best medications for this disease.

Please read as much as you can and trust your Rheumatoid Arthritis doctor, as he knows best!!

We will be enjoying your posts as you go through this process. You sound very mature for questioning everything about this disease.

I welcome you to the forum[QUOTE=Shelly41]

 

Thumbalina, I do want to say hi and welcome.  I totally agree with the advice Kate and Jaz has given you, and I guess I will add some "mom of a teenager" perspective, since they are too young for that. 

I am a mom of a teenager...just one year older than you(although my perspective would be a little different, b/c I HAVE the disease) It is completely overwhelming to look at your darling child that you brought into this world with all of the asperations that they would be the next nuclear scientist, and have the doc hand a dx like this.  Then to go home and look at these meds...that are scary and daunting at best....scary as sh*t at the worst.  Then you look at the beautiful daughter and say...I don't want my daughter to go through all that.  I can understand your reluctance, but you are right and this is YOUR disease.  YOu need to look at what your mom is trying to say, and then look at the damage page of the RA sights, and decide...do I want to play with this???  You also want to look at your pain level and see if you have time to play with this, b/c pain equals damage in a lot of respects.  Then you need to sit down with your mom, and lovingly tell her that this is the path that you would like to try.  Now will you have to change paths...probably...could you give what your mom wants to do a two to four month trial...probably.  In the end YOU need YOUR mom, and will for a long time.  YOu both really need to sit down and talk and to also talk to your RD about any path you choose.  Please don't turn this into a me against mom thing, b/c you will need her help and support and her unconditional love to make it through the next six months. 

Think about what I and others have said.  If I am all wrong...then just chuck the advise, but do know that moms hate for their kids to be sick, and maybe a compromise would help you the most at this point. 

Take care...shel

[/QUOTE]

 

no, you're right, i've seen it forming too. Slowly its becoming me against my mom, and ive been trying to make sure that doesn't happen. I want it to be a FAMILY decision, so I can have my FAMILY support me.

The pain started in may, so to say the least, my life has dissapeared pretty much. I've gone to many doctors, gotten many blood tests taken, and all my blood tests came up fine. I went to a rheumatologist about 2 weeks ago, and thats when i got diagnosed. So at this point i'm ready to get treatment started, and not really waste anymore time with alternative methods. But you know how it is....its all about compromise. On naproxen I can atleast get out of the house, i can walk, open up water bottles again. But i'm ready to start moving foward, and to start trying to get my life again.

I want my future back.I want to atleast be on the path to feeling better. You know, to KNOW i'm treating this. Not just...numbing the pain a bit.

Welcome to the board.  I am 51 and was finally diagnosed with RA plus some other stuff about 16 months ago.  My RA factor was 150, and someone has posted as high as the 900s.  The rheumy immediately put me on five 2.5 MTX once a week.  I chose Saturday.  Although I read that you start to feel results from six weeks to four months, it was nine months before the creepy feeling of my joints being eaten up from the inside stopped.  For me it was essential to slow down the inevitably as RA is a chronic, debilitating disease, which can go into remission if you are diligent, and it sounds like you are.  And I had no problem with the side effects.  Some in here were unable to tolerate MTX.  You are unique and will need your combination to stay as well and fit as possible.   Take care and we are pulling for you.  Cathy

Hey Thumbalina!

There is a small but...um...loud

There is a small amount of science that backs up alternative herbal and diet means of controling this disease.  The hard part is finding the what works for your body and that could take a lot of time - time that you do not seem to be willing to invest in the beginning of this diagnosis. 

I was 'early onset severe Palindromic RA' and while I truly wanted to start the natural way, whatever was happening to my body was like it was being hit by a freight train.  I felt I couldn't waste the time it would take to learn about and experiment with natural remedies. 

I chose a little prescribed traditional med - antibiotics.  Go ahead, look on the American College of Rheumatology DMARD list - Minocin is on the list. 

There are two camps in the research biz of these diseases.  One is your body has inexplicably turned on itself and is attacking your joints.  The other is the 'infection connection'.  That's the camp I joined.  My body is trying to hit an intracellular infection and missing because the microbes are hiding in the white blood cells - the very cells supposed to be defending me from infection.  Many people report an infection just prior to the onset of RA.  That may or may not be your case.  Just curiousity on my part.  My onset was an infected tooth.  Go figure!

So, you might want to tell your mom to check out www.roadback.org.  Tell her to send an email to Cheryl Fergusson.  Her 16 year old was diagnosed with Scleroderma (which makes RA look like a walk in the park) and is back to swimming competitively in her freshman year of college.  Her story is on the testamonials page. 

And you might want to PM Suzanne - her 4 year old daughter is on antibiotics (AP or Antibiotic Protocol) for JRA. 

I think that since you haven't been on the traditional meds you'll probably be an 'early responder' and get your life back.  Then you can spend the time learning other diet/natural remedies.  I'm to that point now.  I was able to boogie board again this summer and my new goal is to surf by next August.  And if a fat, middle aged woman surfing isn't a hoot, I don't know what else is.

Minocin is safe enough to be prescribed for teenagers for acne.  Ask your mom; she was probably on it herself back in the day.  I know I was.  :-)

Hugs and welcome,

Pip


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