Today Monkey had a follow up with his rheumatologists. As I shared in a recent post he seems to be doing really well thanks to the new meds. I have, however, noticed that his right knee looked a little bit swollen. After both doctors looked him over today they confirmed that his knee is indeed a bit puffy and that his ankles are better but still not completely inflammation free.
Since he’s doing well with the methotrexate side effects (thanks to the Leucovorin (calcium)) the doctors decided to up his methotrexate (mtx) dose to .4mL. They also said that since he is older now and seems to understand what’s going on that we could try to give him the mtx orally by mixing the dose in a small amount of juice for him to drink. I’m hoping he will go for this knowing that it’s MUCH better than getting a shot. We were also told that in a few weeks we can try eliminating Mobic from his daily meds and see how he does. It would be so nice to have him down to just one medication once a week.
As far as what the future holds for him in regards to the medications here is how they doctors explained it to me. They said that they have three stages of treatment. Stage one is treating the patient to get them where they need to be (no inflammation). In other words finding the right dosage of the right medication to eliminate the inflammation. Stage two would be treating the patient at where they need to be. Basically keeping them on that set medication for a period of time to ensure that they are doing well. Then stage three would be determining how and when to wean off the meds. They said that stage two can last up to 2 years and it won’t start until stage one is complete. Right now we are still in stage one. We need to find the right dose of meds to get Monkey inflammation free. After that he will stay on that dose for 1.5-2 years to ensure that it is working and putting him in a medicated remission.
As far as we know the mtx isn’t having any other ill effects on his body. We were going to do a blood draw today to check his liver and such but since he has a cold they asked that we wait until he is better. Apparently when you’re sick your body can show signs of inflammation in the blood work. So, hopefully next week we’ll get the blood work done and know for sure that he’s still doing well in that sense.
We’ll go back in three months to check again to see how this new dose is working for him. In the meantime we’re really enjoying the fact that he can run and play with his brothers and not end the evening limping and in pain. As much as I hate that he’s going to be on a chemo drug for potentially two more years I am very thankful that it is helping him live a ‘normal’ life. Every 3 year old deserves to just run and have fun without pain!