Thursday, September 27, 2012

Uveitis is back

After a few years of having clear eyes, we found out yesterday that Jacob's eyes are flaring. Yesterday Jacob saw our local eye doctor for a quick check to order new glasses. Jacob had been complaining that he can't see far all of a sudden his glasses on. So I made the appointment to get a new RX and order new glasses. I was not at all expecting to hear that the doctor saw cells. He said that the right eye had 1+ cells, the left just a trace. Right after the appointment I called Dr. Foster's office and they had  the doctor on call, call me right back. She advised me that we should get him into MERSI as soon as possible. They scheduled us for 7:45 AM today. After a 2 hour drive into Boston in the awful traffic, we saw Dr. Foster. He was concerned because when the tech took Jacob's vision it was very poor. He could barely read the big E with his right eye. Both eyes were significantly worse in vision. Dr. Foster asked the fellow to have him refracted (see if his vision could be corrected with another RX), dilated and a retina scan and possible angiography. Panic mode was setting in. Fortunately, after he was refracted they saw that his vision could be corrected and that the poor vision was more from the glasses needing an update than from disease. I don't understand though, because he was just there a month ago and his vision was fine. So how did it decrease that much in 4 weeks?
After the dilation, Dr. Foster looked again and he could see that the inflammation had not spread to the back of his eyes. So the treatment plan is to go on the steroid eye drops for four weeks. Starting 4x a day for the fist week, 3x a day for the second week, and so on. Then return in 6 weeks for a recheck. We are hoping the drops will kick this and that's all he will need for now. We have not discussed restarting any systemic meds yet. We now need to pray that the drops are only for this short time because he cannot be on those for an extended period due to his cataracts. The drops will worsen the cataracts. 
I just can't believe this is all starting again. It's been four years since he has had a uveitis flare. He has been off the Humira for four months and it's back. It is so disappointing. So do these kids ever get off meds? The pictures are Jacob at age 9 starting Humira and him yesterday.

Saturday, September 8, 2012

September 2012 Rheumatology recheck

Jacob has been off of Humira over 3 months now. Overall he is still doing very well. At his last visit he had a couple of swollen toes and was started on Meloxicam. His toes lookrd grest! There wasn't any swelling in them. The only other thing that was a concern this visit was his left hip, again. A month ago his hip seemed to be okay, now it is stiff again. Jacob does not have any pain in it though. Jacob has never really complained of pain anywhere. I honestly think he has a very high pain tolerance and unless it's something severe with him it doesn't register. The rheumatologist made it very clear that his hip isn't "normal" but she is unsure if it's active disease or if it's stiff because of past active disease. His last MRI, a year ago, had shown then that there was active arthritis in both hips. So the plan for now is that the doctor wants to give him another few months off of the heavy meds and repeat an MRI then. The MRI will determine whether or not he will need to start back on his medication. I discussed with the doctor that I was a little worried that if this is active disease, what is it doing to his hip right now. Hip arthritis scares me. She felt as though if we waited another three months that we wouldn't lose any ground without treatment. She wants him to continue this "holiday" off the meds. So by the time the MRI is done it will be 6 months off of medication. I am glad his body is getting a rest from these meds and hope all stays quiet!

Oh I almost forgot to add, Jacob had an eye appointment last week and his eyes are still clear. So no Humira for 3 months and NO RELAPSE!!! Wahooo!! We still need to see Dr. Foster every three months to be sure they stay clear.