When you go the the rheumatologist what does your typcial appointment look like? What does the dr. examine, and how much time does the doctor spend with you?
I am switching doctors in March. My current rd examines my hands, does blood work, and that's it.
In the past year she's done so many things that have made me lose confidence in her, but I don't really know what other doctors do. If I've called the office for something I usually get a call back 1-2 days later from a nurse and often the answer indicates the doctor didn't have my chart in front of her when she answered the question.
For example, the nurse might say the doctor says I should try prednisone when I am already on prednisone per her orders. Or the latest was when the nurse told me the doctor says I need to be on Remicade for 3 months before we even think about deciding if it's working. I asked her to look in my chart to tell me how long I've been on Remicade. She looks at my chart....oooooh, she says, it's been over 5 months, hasn't it? She'll tell the doctor and call me back.
Oy. I am so done with them.
For sure dealing with Doctors (of all kinds these days!) demands we do 'our' own homework. Go prepared, phone often and if possible make friends with whoever answers the phone. This disease seems to be resistant to different drugs for different people and there is always the 'bad' effects they rain on us. (mtx, attacks your liver, prednisone does all sorts of things, and all of them are reducing our ability to fight infections!!) If you have pain that is the first line of defense, then you can work on the stiffness,etc. doctors always respond to pain, trying to help you, but I've found that weekends/their vacation time, always happens when I need them the most. You must plan at the beginning of the week and then be prepared for the weekend (get an okay to up drugs in you need to) Good luck with this and I'm 'sorry as heck' to hear your remicade isn't working after 6 months! I too am waiting for it to help me. Do we need more of it? I also take mtx (2 a week) and 3 X5 prednisones. This is a constant battle with the enemy our own bodies. Good luck with your new doctor.My RD is overwhelmed and has about six to ten minutes with every patient he sees, as there are so many patients and many walk-ins, plus he is an hour away. So I come prepared with a list and notes and they are short and to the point. I was recently having the same delimma with him. I realized that he may have no clue as to how I am actually doing because he doesn't know what I "can't" do. So I threw that list in there too. It was about 5 things long, but we only have 6-10 minutes! Turns out, I am not a very good complainer. That list was the one that got results. He does the same thing. Hands and blood work, I figured out I had better keep a journal because my memory is bad and make the list the night before I go, reviewing the journal entries. He's just very Busy, I had better speak up and be Proactive. If I have to demand an extra minute to have him peek at something funky, I will. There is only one other RD's office that is as close. The rest are closer to two and three hours away. So I have to make sure both of us are on the same page. I don't have alot of choices here.
He's never lost my confidence though. If he did that I would have to take a hard look at changing. If provided good information, My even very busy RD will help alot!!
Hope that helps...
You have heard the old saying "the squeaky wheel gets the grease". Unfortunately, we have to be our own squeaky wheel. My dr goes over how I'm feeling, does an exam (as required because I'm on meds) and talks about our plan. I'm pleased with how my visits go.
You must be your own patient advocate
Phatgirl It really seems that there is no typical appointment. Bloodwork should be done on a regular basis and they should do more than just look at your medications. It is important to bring any problems to their attention. For instance, they probably don't know that your left shoulder is making it impossible to sleep at night. Even when you tell them, it might not register. But I keep a full list of all my medications, my medical history, allergies, etc with me at all my doctor's appointments. For my primary, I summarize where we are at with each specialist. I learned a long time ago that I needed to be in charge of how my treatment goes. You do have to learn how to be your own advocate. You will be much healthier in the long run. Well, I've only been to my rheumy twice. Both times he examined all of my joints, did blood work and asked about all of my symptoms. He went over which medications I was going to try, explaining the bad side effects. He told me both times to call him and keep him updated with how the medicine is working, etc. in between my scheduled visits. He said that if by chance he doesn't call back the same day or the following morning, to call again. So far, he has called me back himself and left a message for me to page him on his pager so that we can chat about how I was feeling. So, nice guy. I'm very pleased. My fingers are crossed this will continue................and hopefully the medications will kick in and I'll feel better. Wow, Debrakay, your guy sounds really nice. I'd probably end up falling in love with any man that paid that much attention to me though. : ) I am an advocate for myself at appointments and I do come in with a list and I do contact the office when I need to. I am just so sick of squeeze the knuckles, make a boo-bo face, assure me this med IS going to work and taking off. The last time I went the dr. said she was going to draw blood to check inflammatory markers. The nurse comes in to take blood and I mention inflammatory markers. Nope, she didn't know anything about that, but she'd check with the doctor. Never heard anything so I assume they weren't drawn. Today I got a bill from the office and I got billed for those blood tests. The "doctor" by the way is really a nurse practioner, not a rheumatologist. Can't get into the real doctor, but Sue is closely monitored by the real doctor. As I said, I'm just way done with this office. I'm heading to the university teaching hospital an hour away. Well Scout, I was wearing my big girl thongs on my first appointment, lol..... My rheumy is at a teaching hospital....I hope you find better luck with a new one.
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