May 30, 2009

I guess it's time for Enbrel...

May 09 006

Just as I thought, the doctor thinks that we need to treat Ayla's arthritis "aggressively". He has no doubts that she should start on Enbrel. Why? well because Ayla has been on one or more medications since she was diagnosed last year in March 08. After one year of being on Naproxen for 6 months, oral Methotrexate for 2 months, injectable Methotrexate for 2 months, oral steroid, prednisone for 5 months and three steroid joint injections, she still has a swollen left knee, right ankle, right elbow, arthritis in her jaw, neck and just yesterday the doctor told us that it seems like she has it in both of her hips now. Great! As I mentioned before, her sed rate is 69 (the highest it has ever been) and her CRP level is increased as well. This tells us that the Methotrexate is not working , we would have already seen a difference if it were. The next drug used to treat JRA when Methotrexate does not work is Enbrel. So far this is my understanding of Enbrel and how it works related to JRA.

In 1999, ENBREL became the first biologic medicine approved to treat moderate to severe JRA. ENBREL is a targeted treatment and can work selectively by affecting tumor necrosis factor (TNF) levels. TNF, a natural part of the immune system, is a messenger involved in the inflammatory process of JRA.

ENBREL is indicated for reducing signs and symptoms of moderately to severely active polyarticular juvenile idiopathic arthritis (JRA) in children ages 2 years and older.

Because of the effects on the immune system, ENBREL can lower the ability of the immune system to fight infections and can raise important safety considerations .Serious infections have happened in patients taking ENBREL. These infections include, tuberculosis, and infections caused by viruses, fungi or bacteria that have spread throughout the body.

In a medical study, ENBREL was shown to be effective in about 3 out of 4 children with JRA who used it. For these JRA patients, ENBREL has been shown to begin working in approximately 2 to 4 weeks.

In a medical study of patients with JRA, infection, headache, abdominal pain, vomiting, and nausea occurred more frequently than in adults. The kinds of infections reported were generally mild and similar to those usually seen in children. Other serious adverse reactions were reported, including serious infection and depression/personality disorder.

May 09 016

The Food and Drug Administration (FDA) issued an early communication on June4, 2008 regarding an ongoing safety review of Tumor Necrosis Factor (TNF)Blockers (marketed as Remicade, Enbrel, Humira, and Cimzia) and the possible association between the use of these medicines and the development of lymphoma and other cancers in children and young adults

Here is the link if you would like to read it. Even though it is in the back of my mind, I try not to think about that because right now our focus is getting Ayla into remission so she will not have irreversible joint damage in the future.

May 09 002

So we are hoping that Enbrel will be the answer to our prayers. Ayla and I pray every night that her arthritis will go into remission. Although she is only 2 1/2, she knows that she has "arfritis" as she calls it and it is normal for her to take medicine everyday. Sadly, it is all she knows. She knows about her injections, she says she is getting medicine in her leg to help her "arfritis". She knows that Brennan does NOT get medicine because he does NOT have "arfritis". She knows the difference between the medicine bottles and which one is for her belly, which one is for athritis, etc.. I truly believe this disease will help her grow into a strong young lady!!

As for now, we still have to give the methotrexate in addition to the enbrel . That will be two weekly injections for her. In time, we should be able to discontinue the methotrexate.


This is a picture of Ayla last year right before our very FIRST rheumatology visit. This was the day of her "official diagnosis". It's hard to believe how little she was and how much she has grown over the year.


We will not stop battling this disease, we ARE going to beat it no matter WHAT gets in our way!

"JRA is not just a child's disease. For every kid with JRA, there's a family living right alongside—helping that child manage the pain and stiffness. Being the parent of a child with JRA can be an overwhelming responsibility. You have to make decisions that affect your child's life."

1 comment:

jayneH said...

Hi, my daughter Ashley-jayne was dx at twelve with Juvenile Arthritis was very poorly with it had a lot of treatment shes now 26 next week and isnt on any medication at all shes doing really well shes also a mother of two little boys ages 6 and 6 months, what i am trying to say NEVER EVER give up fighting for your little one hopefully like Ashley things will improve and she will be able to live life as normally as the next child, good luck, love jayne