Freaking nightmare working with GI's nurses and specialty pharmacy

Sheesh! So sorry you are having to deal with this. I had to wait about a week or two for my first infusion just for paperwork etc so can only imagine how frustrated you feel — especially since you aren’t feeling well anyway!

I think I would just show up at the drs office and sit down with the nurses and have them make the call while you are there. That would mean you’d have to take off work tho. Definitely be nice and explain how sick you are and that you’re desperate to feel better as soon as you can. Doesn’t hurt to take some cookies or candy. I know it sucks to have to “pretend” but I’ve found the nurses are easier to deal with if they “like” you. Not to say they don’t or that they’re not incompetent because this has definitely gone on way longer than it should have. Unless you really like your GI maybe it’s time to shop around for another that has a more competent staff. Won’t do much for your immediate situation tho.

I would probably go there as Flowers suggested. Or....get your GP to call the GI directly and ask what is going on regarding his henchwenches at the desk, including the incompetent nurses and complete run-around that's been happening.

q

Flowers: Yeah, I feel like they probably do hate me by now. I should not have gotten snippy with them the other week, but I have tried to be nice since then. I do like this GI pretty well. He is the first GI I've ever had who will give me pain medication when I really need it, and that's worth all this headache to me, I guess because the severe pain is the hardest/scariest thing for me to deal with. I loved my old GI who even gave me his cell number so I could all him directly when really sick!!! That was unheard of and I just could not believe it. He would even call me himself at times when i was super sick, so I didn't have to try to relay things through his nurse (even though his nurse was really great to work with, but it's always nice to be able to talk to the doctor directly without even having to make an appointment). He moved to South Dakota at the end of December though. My new GI is in the same practice and it's only 30 minutes from my house, which is really convenient. I live in a rural area in the woods, so in the past, I've always had to drive at least an hour to get to a GI doctor. I also like the hospital my current and past GI work at and again, it's close to where I live, so if I do have to go to the hospital again, it's nice to have a GI there who I actually know.

quincy - I did try to loop my doctor in about all of this, but like i said, that backfired because I didn't know the nurses intercept his emails. Oops. Lol. They did tell me they looped him in for me... I am sure they probably are busy because their practice lost my old GI but I know they now have two Gastro nurse practitioners who see patients. I don't want to go to a nurse practitioner though. And I told this new GI that when I first spoke to him (I called the hospital and asked for the on-call doctor to get through to him that time, lol) and he got me in to see him almost right away and said I don't have to see a nurse practitioner if I don't want to. So I think he's a pretty solid doctor and I like that he listens to my needs.

Hopefully, when we get my next dose scheduled in two weeks the process will go much smoother. Good idea to just show up at the office next time and see if that is easier.

Thank you! Really appreciate you guys listening and all the advice and feedback.

Thank you! Ok, yeah, when I called to schedule with the infusion center today, they said I could schedule the other two with them when I go in for my first one on Thursday. That part was easy. It's just a matter of if I need to deal with the pharmacy to ship the medication to them, but hopefully I can just deal directly with them now and cut the doctor's office out of it. Is it working for you, CCinPA? If so, how long before you noticed a difference? I'm still on 20 mg pred (well, I've been going back and forth between 10-20 but I seem to get symptoms after a few days on 10) and my doctor's instructions were to start tapering by 5 mg per week when I start the Remicade. I have very few symptoms currently while on this dose of prednisone.

Did you sign-up for Remistart program to offset your co-pay costs?

Just got done with my infusion a few minutes ago. I didn't have any reactions. Feel a bit tired, but I didn't get enough sleep last night, and maybe felt a tiny bit lightheaded at the end. They didn't keep me afterwards at all to monitor me like I've read they do for everyone else, so I found that odd, and I wasn't given any pre-dosing with Benadryl or anything. My blood pressure was 88/53 the last time they checked it, which seems a bit low. Mine is usually low but not that low. It went down throughout the visit. The nurse wasn't concerned at all though. All-in-all, it was very uneventful, which I guess is good.

Thanks! I actually called the IV center afterwards because I was a little concerned about being lightheaded and the low blood pressure reading, and they told me I could come back in and have my b.p. taken again. It was 104/63 when I went back in, so pretty much normal for me. Now I feel fine.

I asked the IV center nurse about pre-meds, and she said my doctor hadn't ordered any for me and that most people just take Benadryl or Tylenol at home before they arrive because it's a lot cheaper, but that it isn't really necessary to take any unless I have a reaction or know that I'm sensitive to meds (I'm not). Good to know they don't keep you afterwards for monitoring either. I read a bunch of reports online before my appointment that said they did.

I got my next appointment scheduled and they said they already have my Remicade shipped to them for that one so it should not be a hassle this time, thank god.

Yes, it's 5-mgs per kilogram. I'm 75-kilograms so that's 375-mgs for me remicade comes in 100-mg bottles, and they cannot use the remainder in other patients. So they round-up and just give me 400-mgs.

Nurses might've just used your last weight in the computer.

I've been weighed in person before the infusion. I've been asked my weight at another place.

They weigh me every time before they mix the med for the infusion.

I've never had any pre-meds and haven't had any problems so far. One time my blood pressure was really low like that, but the nurse said that's not unusual since they are pumping all that fluid into your veins and you're just kicking back relaxing for a couple hours

Yeah, sensing a lot of anxiety from you over this. You'll be fine. I was nervous at first too. No side effects here, and I am 7-years into remicade.

Pre-medicate for your next infusion.

Beware of the nocebo effect. "A nocebo effect is said to occur when negative expectations of the patient regarding a treatment cause the treatment to have a more negative effect than it otherwise would have."

Today I feel the same as I was before Remicade.

Ok, thanks. I read some people respond within 48 hours, so I thought maybe...