Saw my RD yesterday, and I was kinda surprised by a couple of things:
The Enbrel/mtx combo doesn't seem to be doing much if anything, but rather than increase the dosage or change to Humira, he wants me to stick with the Enbrel and switch the mtx to Arava. In 4 weeks, if that isn't helping, he wants me to switch the Enbrel to Rituxan.
I like my RD and I think he's a good doctor, but lately it seems like I need to do a lot more work (asking, suggesting, etc) than I used to. And I don't always get answers in the detail I'd like. I don't want to switch, but I guess I've just gotta get more assertive about nailing him down.
The one pred pack he gave me worked wonders, but he has not suggested putting me on it regularly, even a low dose, at all.
My sed rate is now normal (10, range is 0-20) and yet my C-RP is 26.9 (range is 0.0-4.9). I don't know enough about the difference between these two indicators to know why one would be down and the other would be high. Guess I should just be happy my sed rate is down.
The RD ordered a bunch of thyroid tests to check for Wilson's thyroid or other issues, including Free T3, Free T4, Thyroid Cascade Profile, antithyroidglobulin Ab, and antithyroidperoxidase Ab (if I read them all right). During the visit, I asked about the thyroid and he said it was normal. Yet after the appt, when I read the report, the only thyroid result I saw is a single number for Thyroid Cascade Panel (0.663, range is 0.350-5.500). Underneath it says "No apparent thyroid disorder. Additional testing is not indicated." Does this mean the lab decided not to run the other tests? Can they do that?
I asked him about my right knee feeling a cold/wet sensation, and he said it could be neuropathy. But he checked a couple things and seemed to dismiss that idea, and we got talking on another issue without my ever getting an answer on what it might be. I guess I do need to make that ortho appt? (can you tell I don't wanna?)
It can be tough to get all of our questions answered but you are right in that we have to get assertive and I was not an assertive person. I take a list with me and have learned to get a little pushy wanting all of my questions answered.
Just starting my 4th month of Enbrel/MTX I am noticing little improvements and will go to the 6th month mark before assessing its value. I did switch from oral MTX to injectable and can see a difference after 1 month. My Dr read an article showing that many of us only absorb 50% of the oral MTX.
Take a list to help you become more assertive. Dr's need to understand that we need the knowledge to assist them in our treatment.
I actually do take a list, but some of my questions don't come up until afterwards....example: I reduced my SAM-e intake for mtx, can I go back up now that I'm taking Arava, especially since my liver enzymes are up? And others, like my knee, start to get answered, and then get lost in the conversation.
If my hubby were a detail person, I'd bring him and have him help me stay on track, but it's just not his skill.
Going to the dr can be somewaht overwhelming at times. Even with a list you can get frazzled from some of the answers to your questions.Well, I have an update of sorts. I faxed my rheumy with a couple of questions yesterday and he called me back.
One of them was why there was only the one thyroid result. He looked at the report again and told me that Labcorp (my favorite incompetent lab service) simply didn't do the other tests, and that it happens often with them!
And thankfully, the cold wet feeling in my knee has disappeared. Don't know why, but I'll take it!