I HATE new doctors....

Okay, let me preface this little rant by saying that I really do like her new doc and will probably continue to drive 1.5 hours each way to see her. The appointment was very thorough and and although it took FOREVER I know this is one of the very best rheumatology departments in the country.

So all that being said, the new doc wants to change her meds AGAIN! Right now she's on the enbrel shots once a week and methotrexate orally once a week. The methotrexate is what keeps her eye disease in check but it has liver function side effects so that is the med that makes us have to take folic acid supplements and get blood work done every 6 weeks. The new doc is worried about her eyes - even though they are 'quiet' she still has white blood cell floaters and blindness from iritis can happen very quickly if we miss it. We are supposed to ramp up her eye doc visits AND she wants us to go from enbrel and mtx to humira. Humira has only been approved since Feb. of this year, but it supposedly has great results keeping iritis in check. Ideally we'll take her off the enbrel, replace it with humira and wean her off the methotrexate so that eventually she's only on one medication. The other good news is that the shot is only every other week! The bad news is that the stabilzer they use in the medication causes the injection to be much more painful than enbrel. I let Lilly make the decision and she wants to try the humira. If all goes as hoped probably by the first of the year she could be down to one shot every other week and blood draws once or twice a year. We'll have to see the eye doc monthly for awhile to make sure that the iritis doesn't come back but that's not a huge deal. We'll see the rheumatologist every three months.

Sounds good right? And it is of course, but all of this can be so tiring. I mean, it's hard to choose to put medication in a child's body when there is so little long term research out there. But, on the other hand thank goodness we have these options, right? The thing is that the med she is is on (both enbrel and humira the new drug) is a TNF inhibitor. TNF stands for 'tumor necrosis factor'. Bottom line, the research (such that it is) shows that it increases cancer risks among those who use it. Problem is, people who have conditions that benfit from these meds are also more likely to get cancer (lymphoma primarily) than the general population. It's difficult to determine what is a disease risk and what is from the meds.

The idea that I might be injecting her with something that is going to give her cancer later...I just can't even think about it for more than a few seconds. But the bottom line is, what choice to I have? If I do nothing she will be unable to move without pain and will probably go blind within a few months. I could go back to the methotrexate alone but that has liver side effects - she's already had one high blood test showing some small issues there. I know I don't have a choice I just hate being the one to have to decide this for her. All I can do is hope that neither of us will live to regret it. The drugs work so well for her and take her from what would be a terrible outcome to a child who is, for all intents and purposes, just like any other child. That is such a great thing to be able to offer her a normal life. I know that all I can do is the best I can do, and that is to give her the drug and pray that I'm not doing any more damage.

Sorry to whine. Sometimes it just helps to get it out. Brad is teflon with this stuff. He can't even address the possiblity that this might end badly. This is why I hate these doctor visits. I had made my choice with the enbrel and was able to put the decision away and now I'm having to redecide it all over again! I know in a few weeks we'll move past this and I'll be able to put my fears aside and get on with it. Thanks for listening. Oh, and sorry this was not very funny but something kind of sick funny did happen.

My uber-obsessive researching really backfired. The doc first started talking about remicade which I knew is done by iv in the hospital once a month and takes like 6 hours! I nearly passed out (seriously nearly had to put my head between my knees) because I thought that was what she was going to suggest!! Brad couldn't figure out what in the hell had gotten into me, but luckily the doc figured it out once she realized I already knew the delivery system on it. As it turns out she was simply trying to point out that remicade is a great med and humira is very similar but it did give me a scare!!