Weds. we headed to Gainseville, just Jackson and I, for another infusion and a follow up appointment. (If you are wondering what an infusion is, here is the link to the definition, http://www.merriam-webster.com/dictionary/infusion, look at number 3.)
To say the infusion room was busy would be an understatement!! Our chair was ready when we got there though so we sat down and waited. Because of the anticipation of the IV, Jackson was working himself up into a fit. He hates needles. He get Solu-Medrol in his IV for about an hour. Once the needle is in, and the medicine is flowing, we're all good.
Dr. Elder and Heather came in to see how he was doing, check out his joints, and talk with me about the possibility of adding a third medicine to his regime. Heather and I had talked about this the previous week because she had called to tell me about the some blood work and the results. The type of arthritis he has, polyarticular juvenile idiopathic arthritis (JIA), can also cause him to have inflammation of the eye and bowels. One of us, either Patrick or myself, carries the gene. My guess is me.
Upon looking at Jackson's toes, 2 of which looked like sausages, and his right knee, which was still very swollen and warm, the decision was made to introduce Humira, a pre-measured injectable. So that makes TWO injections a week. Oh and the Humira.....yeah it stings. So we also have Lidoderm patches we put on his arm 30 min. before the scheduled injection. He is no longer taking the steroid but we have it just in case he flares up bad.
We also had an appointment with GI. He had diarreha way back in the beggining of November and because of his diagnosis we needed to meet with a GI doctor to discuss possible Crones Disease. Good news there, we're A-OK in that department. That doesn't mean that he can't or won't develop it some time in the future but for now, he's fine. The doc did say that he didn't want him taking Zantac anymore, it's just not strong enough for the amount of Naproxin he takes daily, 10 mL. He wrote us a script for Prilosec and he only has to take that once a day.
We go back in 6-8 weeks for another infusion and follow up and in 6 mths it's back to GI.
Today is a bad day. =( It's Friday and he did too much yesterday. The day after an infusion is ALWAYS good for Jackson, he can walk better, even run a little, and because he feels good he does too much and then pays for it the day after, Friday. Today he can barely walk and it breaks my heart and frustrates me all at the same time.
Patrick and I have decided that in May, May 1st to be exact, we will be participating in the Walk for Arthritis. I am going to be putting together a team and I am hoping to raise not only awareness for this autoimmune disease but money as well. A cure, that is what we need. If you would like to walk with us and help raise awareness, please, let me know!
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