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!

Thursday, March 28, 2013

Actemra, Methotrexate and an Update

I haven't updated this blog in way too long.  I apologize for that.  I've had so many things going on in my life, both good and bad, I got caught up with things.  I figured it was about time to update you all, and possibly try to write blogs more often.

Last year, I was on weekly Humira and Methotrexate injections.  Sometime around June, my right knee developed fluid and was severely swollen, as you can see in the photo below.

After seeing my rheumatologist, he confirmed with an MRI, that I had a Baker's Cyst.  A what?! I had never heard of this before.  It's basically a fluid filled cyst, caused by the inflammation in my knee.  My doctor explained that sometimes, the fluid gets pushed to the back of the knee, causing the cyst.  It happens when there is so much fluid, it has nowhere to go.  My knee ended up more swollen after this photo too.  After 3 steroid injections, the cyst almost went away, but not completely.  After discussing things, we decided that after 8 years, it was time to say goodbye to Humira.  We decided that Actemra infusions were the next best thing for me, and to continue the Methotrexate injections along with it.  

Once a month, I go into Boston and have my Actemra.  Here is me at my first infusion! 

Since being on the Actemra infusions, and the Methotrexate, my joints have never felt better! I quickly got better, and noticed less and less morning stiffness.  Currently, I'm experiencing no pain, no inflammation and no morning stiffness.  My CRP level is almost down to normal! I am happy to say, that I am do very well.  While, it is still to early to tell if this is truly working, I have hope that things will get better for me.  I also am making sure I eat a healthy diet, rich in foods and supplements that help battle inflammation.  While every one's bodies are different, I have hope that those of you still suffering, will have a medicine that works for you as well. :) 

What would you like to see in the next blog post?! Comment below! 

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Blogger Christina Pereira said...

Hey there! I also have arthritis and go to Boston for actemta treatments and also do weekly methotrexate injections. Where do you go in Boston for your treatments?

May 6, 2013 at 11:55 AM  
Anonymous RArainbow said...

Dear Mallory, I wanted to say how much I love your site! I relate to many of your stories. I am adding you to the blogroll on my site so that others can access all this great information.
Glad that your meds are helping! All the best. :)

May 24, 2013 at 1:08 PM  
Anonymous Anonymous said...

Starting actemra tomorrow after 10 plus years on Remicade. Hoping it works as well for me. Thank you for sharing your experience. Good health wishes to you.

June 9, 2013 at 7:55 PM  
Anonymous Anonymous said...


I just started actemra on Friday. I'm hoping it works for me. How long did it take for you start noticing a difference?

September 15, 2013 at 2:36 PM  
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Anonymous Anonymous said...

My daughter is now 17, and has polyarticular juvenile rheumatoid arthritis. She was diagnosed in the 4th grade, and we have had lots of experience with trying natural things and doing the meds. She began treatment with methotrexate and prednisone. They would storm her with steroids to try and get it under control. She was getting worse, so I begged for Enbrel after a year or so.
With Enbrel there was NO improvement. She was still on the Methotrexate, and occasionally steroids. Finally, they injected her joints with cortisone, and wow, it was major help within a week or so. The injections lasted for over a year.
For years she stayed on Enbrel, but it wasn't working for her, and seemed to make her worse. We travelled often and when we would miss shots her arthritis would improve. I asked the doctor, but he said to keep taking the Enbrel. We had some very busy times and travelled so much for a month or so, and Enbrel was skipped, but she was improving! When I gave her a shot of Enbrel she "locked" up again. I WAS CONVINCED ENBREL HAD A NEGATIVE EFFECT ON HER.
I started doing my own evaluation, and writing it all down. We were going to go off the Enbrel and see what would happen. Each time she would see her doctor he was impressed at her improvement. Every month without Enbrel or Methotrexate she was improving! After about 6 months of his positive exams, I told him the truth. It was not pretty to say the least. I was scared to death! He thought we were wrong in our thinking and it couldn't be! We made a deal... no more secrets, but she could stay off the Enbrel until her basketball season was over. When it was over, she was doing so well, that he decided to leave her off all meds.
Then in the fall, she had a flare up and was getting bad. He decided to do his "test" for Enbrel. She started it and sure enough, her joints were "locking" up and very stiff. He apologized and said he now believed it. She was so bad by then, that he prescribed Orencia. After 4 infusions of it, with no improvement, and an allergic reaction each time she received it, he ordered her cortisone shots to save the day again. It was 10 joints this time, because she was the worst she had ever been.
That's when he started ACTEMRA, and within a few months, I believe we have found the MIRACLE DRUG for her. The nurse that participated in a pediatric study of ACTEMRA told us that SHE HAD SEEN CHILDREN IN WHEELCHAIRS ABLE TO WALK. "WHEN IT WORKS, IT WORKS WELL!" she said. Well, I believe it, and am so thankful that it is working for my daughter. Her inflammation is almost completely gone after about 9 months. We couldn't tell at first if the ACTEMRA was working, because the cortisone injections make her a new person, but now she is improving each month, and it is not the cortisone. She can even make a fist!!! Her rheumatologist is very happy and so are we! So thankful for ACTEMRA:)

November 25, 2013 at 12:26 PM  
Anonymous Anonymous said...

Just a Hi,-). Hope the best for you.

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