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.

 

February 1, 2013

Remicade begins. We had hoped that it would not come to this, but it has.

Jacob officially failed Humira, not only with his eyes, but also his joints too.

We will be going for these infusions every four weeks for at least the next

two years. We can only pray he goes into a medicated remission again.

Below is a picture of his knees yesterday morning. His left knee is very visably

swollen and has been very stiff and sore. He has been having difficulty getting moving after

he has been sitting or laying down for a while. Please pray the Remicade

does its magic and he doesn't need to have his knee injected and drained, and his eyes clear, and

he can get off these drops asap! He really doesn't want to be looking at cataract surgery.

 

 

 

 

 

Time for a change

Yesterday Jacob had an appointment with Dr. Foster, for the follow-up of his uveitis flare.
His eyes did look better yesterday because of the steroid drops, but we knew this was going to happen. The drops put out the fire. The problem is he cannot stay on steroid drops forever. Most vision loss with uveitis is from the overuse of the drops. They should only be used temporarily until the systemic med can maintain the remission ALONE. I knew going in to the appointment that this was probably going to be it for Humira. He had trace cells prior to restarting the med, in October. He restarted the Humira in November and the flare has only progressed. Dr. Foster has advised us that, in his opinion, the best thing to do right now is to put him on Remicade and add back in Methotrexate.
Jacob will start Remicade on February 1st. I'm hoping to start the Methotrexate this Friday.
Infusions are a new road for us. Jacob is not very happy about to change the med. He would prefer to stay on Humira.

Eye flare

Recently Jacob has been complaining that his "cataract" is getting worse. He has been seeing halos around lights. He has also been complaining non-stop that his glasses are dirty, when they are not! I made an emergency appointment with our local eye doctor to have a quick look. I had a feeling that his uveitis may be flaring. Sure enough it was! Not just a few cells but many! A full blown flare. Not only does he have all the cells, but he also has something new for him. He has KP's present. I still do not know much about those except that it means the cells are sticking his lens to his corneas. The doctor called into our uveitis specialist and they wanted Jacob on dilating drops and steroid drops. Jacob is not liking being dilated. His vision is very blurry. So the big question here is why are his eyes flaring. He has been back on Humira for 2 months. I am wondering if it is not working anymore. He is still having stiffness in one of his knees. I just started him back on meloxicam also. I have heard that once certain biologics are stopped and restarted, they don't work because the body has developed antibodies to the drug. Jacob has an appointment this coming Tuesday with the uveitis specialist, we will see what the course of treatment will be!

December 2012

Finally got in to see the Rheumatologist since jacob's arthritis flared. He has had 2 injections of Humira since I last spoke with his doctor. His knee has improved quite a bit. There was only some fluid present. It is still stiff for him, but its getting better. He still has swelling in a couple toes. It concerns me because they do not bend at one of the joints. We also found out the details of the recent hip MRI. The arthritis is only mild in both hips, and It has changed some since the last MRI a year ago, but there is no bone damage. That was great news! The mri also showed the lymphnodes in the hip are inflamed as well. The doctor said that can happen with the synovitis. So the plan is we continue the Humira and return in 3mo. Jacob did have a bunch of labs drawn so hopefully they are okay.

Remission is offically over

Jacob is restarting Humira tomorrow. He has been off of it since May of this year and his joints are starting to flare. Right now he has a stiff, swollen knee and a recent MRI shows that he has active arthritis in both of his hips as well. After speaking with the pediatric rheumatologist on call yesterday, we were told to start the Humira immediately. Last week he went for a recheck of his eyes too and he is still having trace cells. He had been off steroid eye drops for two weeks. It would of been okay to follow his eyes a little longer, but with the joints starting to swell there is no more waiting. So back on meds he goes. We see his rheumatologist in a few weeks, so we will see how things are looking then. Hopefully the knee swelling goes down and he won't need joint injections.
                                             
                                               You can see the swelling in his left knee

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.

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.

I just wanted to share a before and after photo with you. These pictures of Jacob's toes were taken three weeks apart. The first one was prior to the Meloxicam, the second 3 weeks after starting the NSAID. I am amazed at the difference! He has now been off Humira for 3 months now. It has been nice to be able to give his body a break from it.

July 2012 update

 I know it has been a while since I updated the blog. Everything has been going well with Jacob. At the last rheumatology visit in April we decided that we would try to wean down on Jacob's Humira. He has been on Humira for 4 years now. (time flies!) The rheumatologist and I discussed weaning him down slowly. We went from giving the Humira every two weeks to every three weeks. Jacob seemed to be okay with that until about mid May, when he decided he was done with the med. He flat out refused to let me do the injection. I don't know if this is what many families go through when the kids hit the teen years. I emailed his rheumatologist and she said that we can give it a try stopping it. Jacob had the understanding that he may need to go back on this if his joints started to get inflamed again. We just saw the rheumatologist 2 weeks ago. Overall he is doing great! The only thing that showed was both of his second toes were swollen. They xrayed his feet to be sure that there was no bone damage happening. Thankfully there wasn't! The doctor gave Jacob 5 options. (I know he likes to have some control in deciding his treatment) She said we can watch the joints a little longer and see what happens, he can start Meloxicam (an NSAID), Start MTX, start Humira, or restart both Humira and MTX. Jacob chose "option 2". So he started on the Meloxicam. We are to return in another month to the rheum because she wants to watch him closely. I think the appointment is the first week of September. We also have an appointment the end of August for his eyes. I will be very nervous for this appointment because he will of been of the Humira for 3 months. This is the longest he has been off meds while he has had uveitis. This appointment is good timing if his eyes flare we know that he has no choice to go back on the meds.

You can see the swelling in the second toe