My infusion lab is closing!!

[SarahAnne]

I had my Remicade this morning, hooray as I was really starting to feel, not terrible, but not so well. That's mostly my own fault, I was due for it on the 10th but both of my kids had been sick and I wasn't feeling so hot. I decided it wouldn't be the best idea to get it at that time.

The nurse at the infusion lab told me this morning that they will no longer be doing anything except blood transfusions and antibiotics. She said the hospital is supposed to start mailing letters out the beginning of February, and this new change is happening in the beginning of March. My next infusion is due March 19.

We only have ONE rheumatologist in my tiny town and he has an infusion lab at his office. I'm not sure if it's accessible to people who aren't patients (which I'm not - fortunately or unfortunately, I guess it depends on how you look at it). My only other option is to go to the infusion lab at the other hospital in town. I've been there once when I first moved to town; they didn't give me pre-meds and I went into anaphylactic shock. It was pretty scary, I never went back to that infusion lab. I'm really not sure if it was their error or not, I had just moved and was seeing a new doctor as well. The doctor may not have written pre-meds into my order. Either way, I'm pretty nervous about going back there. It looks like I may not have much of a choice.

I'm not seeing a doctor here anymore, I drive up to University of Alabama - Birmingham, and my next appointment is February 7. I hope all the mess doesn't screw with my treatment. I asked the nurse how many patients she has that receive remi, and she said about 30. I don't know where the other 29 patients are going to go, it's going to suck for everyone involved. Tiny town, limited space.

 

[Terriernut]

Oh no!! What crap news for you! I guess there is no choice though is there. What do you think you will do, go to the other hospital and insist on the pre meds to insure no issues???

 

[SarahAnne]

Think I'm going to look into the infusion lab at the rheumy's office first.

On a scary, but related topic ....the family and I were visiting my hubby's grandmother over the weekend. Her niece (I think it's her niece, I've never met her), has Crohns. Grandmother always asks how I am, she's such a sweet lady. I told her I was okay, looking forward to my Remicade treatment. She mentioned that her niece was also on Remicade. Then my hubby's aunt chimed in that she had just been diagnosed with lupus. Neither one of them knew anything about drug induced lupus being a side effect of the Remicade. I don't know if it is from the Remicade or how long she's been on it, but it's a good reminder for me to get labs done promptly and monitor all of my symptoms, even if they seem mild.

 

[flowergirl]

i'm in your boat! too bad i didn't get mine yesterday, we could have met! my kid had a stomach bug saturday that i think i caught a super mild version of so i held off til today just to make sure it was gone.

anyhoo, i just got the news as well. bummed. they said the infusion center at the rheumy is bigger than the one at the hospital, and that's actually where my GI dr here assumed i wanted to go when i initially started, so i think a lot of people get referred there. probably shouldn't be an issue. i think i'd rather go there than bay.