My doctor changed my planned treatment ...without first discussing it with me.
I had been on Orencia for about 6 mos and had shown no effects from it except that I get either Bronchitis or a UTI after each treatment. I spoke with the nurse practitioner and my rheumy and it was agreed I would stop the Orencia and try Rituxin. Well, I went in last week for my first Rituxin and the infusion nurse says her orders say I'm there for Orencia again. They call in my Doc's nurse/assistant (a rather unpleasant woman) and she tells me there was never any conversation with the doc where it was agreed I would change to Rituxin and my doc wants me to try the higher dose of Orencia one more time.
Then I ask her if I can at least have an anti-biotic before I get the infusion to prevent the recurring infections so the assistant goes to ask the doc. She returns saying they have no records of me ever getting any infections. I met with the doc about 6 weeks prior to this only because of the infections. They took blood work to test my immune system at that appt because of that. So because she claims they have no records they wouldn't pre-medicate me and so I now have Bronchitis again since I agreed to try the Orencia one more time.
Here's my question. I am very tempted to switch rheumatologists to another doc in the same practice because I know people who have him and they have never had any complaints. Is it rash of me to change because of this one incident? As far as I'm concerned my current doc and her nurse/assistant have no respect for what I want and anything that's happened in the past. It seems to me they just think I'm some stupid little 24 yo who doesn't know anything when in actuality I've been dealing with this for over 20 yrs.
So...do I change docs and is it alright to switch to a different doc in the same practice or will there be possible repercussions from not going elsewhere?
Thanks,
Erica
Hi Erica,
That sure is a tough one! It has to be your decision to do that unfortunately. All I can say is it is really a bad feeling when a specialist whom you put your trust into does not appear to be listening to you let alone recording your visits and outcomes. I had an incident where my rheumatologist told me I must be stuffing everything into my mouth to have put on weight like I had (he obviously forgot that I was on prednisone that he put me on) and my sugar level had risen - which is also a side effect of prednisone. He also told me I belonged in the 'too hard basket' which I didn't appreciate. Therefore, I changed rheumatologists in another suburb and he is really good. That was my experience. I think you would know in your heart what you need to do and just go with it.
Good luck and keep us informed.
Erica - I would make an appointment to see your rheumy and ask him why he has said one thing and done another and why he hadny noted your infections. If you get no joy from him then I would change your doctor. Sorry you are having such problems. RA is bad enough without the doctor adding to your worries. Let us know how things turn out
Take care
Lisa
I have learned that you really have to be careful about the RD you have. You may want to seek out a new RD, so you can find someone that will listen to you. I don't know about being in the same office. I guess I would wonder about the past and the current talking(which is a violation of privacy, but it happens). You may want to start completely fresh if you can.
Pin and others are right it is bad enough to have this disease, but not having anyone listen to you...that is even worse. Sorry about all of the frustration....have you gone in and told them about the bronchitis? I think I would, just so they can chart it while you are in the office.
Aaaaah, aren't you supposed to stop the meds with an infection and go on antibiotics to clear it up, then go back on the biologic? People, help me out here...is this right?
Because if it's wrong...I'm in the 'dump him' category.
Pip
I agree with Pip.Yeah Pip you are supposed to go off biologics with infections ans antibiotics. Some Doctors though tell you keep taking them as did my old rheumy. Thats why he isnt my doc anymoreI have an appt with her on the 21st which I'm debating whether or not to keep. I'm going to see my ortho on the 17th and am going to ask him for any recommendations for rheumys.
Thanks everyone!
I think I would keep that appt. I would also question the doctor about why they would want to keep you on the Orencia if it has been this bad for you. Surely there is a better match out there. I would also expain how disappointed you were with the lack of listening. I know it may fall on deaf ears, but it will make you feel better if you are honest with her/him. I definitely would try to get labs and stuff from that RD, and have them fax them to the "new" RD. You do need this one for the time being...I guess I am trying to say.Yes, Pip you are right about the infection. My RD does not let me do any of the biologics with a cold either. So, I have had to move two in the course of six months.Discuss what happened with your doc (if you like him or her) to give them a 2nd chance.
Otherwise get a new doc especially if you feel your records were inaccurate or incomplete.