Wednesday, March 20, 2013

3rd Remicade infusion, eye check and rheumatology check

This past week Jacob had his third infusion of Remicade. It started off very tough for him. They could not find a vein and it took multiple attempts to finally get one. To say this was heartbreaking is an understatement. Jacob was incredibly brave and sat still, patiently waiting, for them to find the vein. He was in obvious pain as they poked and poked and moved the needle around. Tears slowly ran down his face. I stood there helpless. So many thoughts ran through my mind watching my poor child go through this. No child should have to go through this to be able to see, be free of pain, and run around like the other kids. I am incredible grateful we have these meds, but it is so stinking hard watching him deal with all of this. Once the IV was finally in, he and I were very relieved. The rest of the infusion went well.

During the infusion Jacob has his eyes examined also. I am so happy to say his eyes are free of inflammation. He had been off drops for a week. His pressures were in the very high end of acceptable, but the pressure should improve now that he is off drops completely.

The next day was his 3 month appointment with his rheumatologist. Overall he feels much better and has only minimal stiffness in his knee. The doctor found some inflammation remaining in his toes, hips and knee still. She wasn't worried because he hasn't been on Remicade very long. We're going to give it some more time and see how the rest of the inflammation clears up. The important thing is he is pain free.

The next infusion will be in four weeks, and the rheumatologist said he is good until the summer.


Gina Diaz said...

My heart goes out to you and your son. I am an arthritis patient my self and I used to have swelling in my joints with severe pains where I went for a stem cell therapy treatment. It actually gave me results and now the swelling and the pain is gone. Stem cell therapy is supposed to be more effective on children and hope it can work out for your son whenever the sickness comes up again. Wish you well!

Jeanna Zee said...

I was wondering how your son is doing on the remicade infusions. I am going through the same thing with my daughter, who is now 25, but has battling this since age 22 months. For her the remicade is great for the eye, not so much for the rest of her.

Jacob's Mom said...

So far so good on Remicade. His eyes and joints are both doing very well. He has an infusion this coming Friday. It will be the first one that has been 6 weeks. He went every 4 weeks up until now.

Steve Taylor said...

Dear Jacob's Mom,

Jacob's journey aligns very closely to that which my 13-year old daughter has experienced. We have just been informed that the Humira and Naproxyn and Methtrexate cocktail that she has been taking for the past 6 months is not working for her. She is having flare ups in the spine, neck, shoulders so our Rheumatologist has prescribed Remicade and she will have her first infusion in a week or so. I am glued to your blog since reading it, and would love to hear about Jacob's experience with Remicade post 9/2/2013. My name is Steve Taylor and I can be emailed at I'd really like to connect if possible, as my wife and I are very scared after feeling that the Humira was the end all be all for my daughter.

Hoping you are still monitoring this.

Thank you,