Wednesday, June 11, 2008

New medication: A man has to be a man about it..or a boy

Jacob had his appointment at the rheumatologist today. What a long day it was. We left for Boston at noon and got home about 5:30 with all of the traffic!

Dr. Lopez the rheumatologist spoke with Dr. Foster this morning before we came. They decided that Humira would be the next option. I kind of figured that would be the route they were going to go. Humira is a drug that is a Biologic response modifier. It is the next step on the ladder to treat aggressive uveitis. This medication is given in a injection every other week. I am very nervous about starting this medication because the side effects are very scary!! One of the side effects listed on this is lymphoma! This drug along with the MTX are both immunesuppresants.

The rest of the visit went well. Jacob's knee is still improving. Still no cortisone recommendation. Jake also had bloodwork, a TB test and a chest xray to prepare for the new medication. The TB test was a little difficult for him to do. It took about 1/2 hours to convince him to do it. He was crying his heart out! After that was the xray and then the bloodwork. He really surprised us with the bloodwork. He did great and no tears for that!

On the ride home I gave Jacob the pamplet on the medication to read. He was reading it and said why is it talking about injections and nurses. So I told him that he was going to need injections every other week for this medication. He didn't look too happy. I let him think about it for a while and asked him again later what he thought about it. He said he was okay with it. He told me a man's got to be a man about it! I said to him that the shot will hurt he said he can handle it.(I have heard that the shot is extremely painful!) This poor kid has grown so much in the last six months. I am so proud of him. He even said today, mom it could be worse.

So the next step is getting the medication. It has to get approval from the insurance. Humira actually hasn't been approved for uveitis. It has been only approved for severe rheumatoid arthritis in adults and polyarticular JRA. (Jacob is pauciarticular-less than four joints involved) It has shown to be effective in treating uveitis though. I am hoping the insurance doesn't give us any trouble. I think the drug is close to $2000.00 a month. YIKES!!!!

Once we get the drug in hand. We have to go to the pedi. to have the first shot administered. He will have to sit there for about 20 minutes to make sure there isn't an allergic reaction. I am hoping by Monday we can have it done.

Dr. Foster wants to see us back in 4 weeks, to see if the drug helped. Then we see the rheumatologist to adjust the drugs if necessary. So the current meds will be the methotrexate and humira. We will be able to stop the indocin. Yay for that!


Tami said...

Hello! I have thoroughly enjoyed reading your post. It lets people know that they aren't alone out there! This disease and its effects on the eyes is so rare that many nights we look out at the world and think.. are we the only ones? I have a very special little friend who has JRA. He has been through 3 surgeries on his eyes now (since the first of the year). He is so afraid he will be blind. It is hard to reassure an 11 year old that everything will be ok when you have such intense fear yourself! We aren't certain that what is being done is the best thing, but it is so rare that its hard to know. Now the surgeon who has been doing his cataract surgery is not going to do any more surgeries (on anyone) so it makes you second guess yourself...its really hard! I have been doing some checking with Dr. Stephen Foster.. it does sound like his is foremost in his field! I worry so much for this boy because the dr.s he is seeing have never seen or dealt with any of this before... Good luck to you however.. You and your family are in my prayers