JRA.... Journal of a Radical Arthritis Chick

Here I give advice, speak of my experiences and give information to those who want to better understand Rheumatoid Arthritis. I am NOT a medical professional, and you should always seek advice from a doctor.

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Location: MA, United States

Hello everyone! I am 28 years old and was diagnosed with JRA (Juvenile Rheumatoid Arthritis) when I was just 3 years old. I've had my battles with this disease over the years, and have decided to create a blog. I want to share my stories and adivce with other RA chicks, or anyone interested, to raise awareness and get insight from others. Feel free to comment/question me about anything. Thanks, and I hope you enjoy!

Tuesday, June 21, 2011

The study of Enbrel

Medication Blog #3: Enbrel

When I was a sophomore in high school, back in 2000, I was asked by my rheumatologist to try out a study for a new medication for my JRA and Uveitis.  Rheumatologists and scientists try to find one medication that will work for both, since many eye drops don't work as well as medications like TNF blockers.  Uveitis is a rare eye disease, and as I was one of the few patients he had who had both, I agreed.  The study was held at the National Institutes of Health in Bethesda, Maryland.  NIH paid for the hotel and airfare, so it was a great opportunity and I was happy to it try out.  The study lasted about 2 years, and had an impact on my life in many ways.  I was getting onto a plane on 9/11/2001 to go to one of my appointments, while that's a whole another story, it still was a major part of what impacted my life.  I met so many children with many different ailments who were so worse off than me, it made me feel grateful for what I have.  I made some great friends, one whom him and I stayed pen-pals for years and even still talk through facebook to this day.  Of course, the study was also a great opportunity to try out a new medication and see if it works.  I had to mointer everyday of how I felt and any side effects that came up. Let's discuss Enbrel and I will share my experience with it.

Enbrel (etanercept) is a type of medication called tumor-necrosis factor (TNF) inhibitors. It works by blocking the activity of TNF, a substance in the body that causes inflammation.  It is used to treat symptoms for a number of autoimmune diseases, such as Rheumatoid Arthritis, Psoriatic Arthritis, Juvenile Rheumatoid Arthritis (or known today as JIA), Crohn's disease, and more.  Enbrel is an injection that comes as a solution (liquid) in a prefilled syringe, an automatic injection device, and as a powder to be mixed with a provided liquid.  It is injected subcutaneously (under the skin) and usually given once or twice a week.   Usually the first dose is given by a nurse in your doctor's office, then if all goes well, you do the injections yourself at home.

One major side effect of Enbrel is that it lowers your ability to fight off infections, as does any TNF blocker medications, so when your sick it is important to contact your doctor who prescribed Enrbel.  Sometimes it is required for you to skip some doses of your medications until you're better.  Other side effects include: redness, itching, pain, or swelling at the site of injection, headache, nausea, vomiting, heartburn, stomach pain, weakness, and/or cough.  Major side effects include: seizures, bruising, bleeding, pale skin, blistering skin, rash, hives, itching, swelling of the eyes, face, lips, tongue, throat, arms, hands, feet, ankles, or lower legs, difficulty breathing or swallowing, rash on the face and arms that worsens in the sun, numbness or tingling, vision problems, weakness in the arms or legs, and/or dizziness.  *It is important to contact your doctor immediately at first sign of ANY side effect.  This is not a full list of side effects, because everyone reacts differently to any medication.*

The study I was in for Enbrel was used to see if it worked for both my JRA and Uveitis (inflammation of the eye).  Enbrel seemed to work so well for my joints, I was able to walk around Washington D.C. all day with no complaints, it was the best I have ever felt while having this awful disease.  I was really hopeful that I had finally found a medication that worked.  Unfortunately, while it seemed to work excellent for my joints, it did nothing for my Uveitis so I had to stop the medication and find something new.  I know many others who are on Enbrel and love it, it has worked excellent for some people who don't have to worry about Uveitis. 

3 Comments:

Blogger Deb aka murphthesurf said...

You got me hanging here...what did you wind up on to help with the uveitis? Every time I read a JRA post I just want to say...CURE! Wish more then anything they could come up with a cure. But in the meantime we are fortunate to have a wider variety of medications to choose from compared to even 15 years ago. And for that I know I am grateful.

June 21, 2011 at 1:10 PM  
Blogger Kate said...

To diagnose arthritis, the rheumatologist will prepare a medical history and perform a physical exam. The doctor will look for certain features of arthritis, including swelling, heat and movement restricted in the joints throughout the body, as well as nodules or lumps under the skin.

Kate Middleton
Findrxonline

June 21, 2011 at 2:01 PM  
Anonymous Mallory said...

Deb - I am still looking for a medication to work for both the JRA and Uveitis. I am currently on Methotrexate and Humira. It seems to be going well, but time will tell. Thanks for reading my blog!

June 21, 2011 at 2:48 PM  

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