Another Frustrating Infusion Center Visit

I don't know how they decide what your dose should be if they don't weigh you. You should be getting 5 mg per kg of your body weight. So if you weigh 120 lbs you should be getting approx 275 mg of the med at each infusion. They could be giving you too little. Please find another place for your infusions. This place sounds like a quackery

I had slight response after my loading doses, but not really as much as I should have had. Doc doubled my dose to 10 mg and it's been 3 weeks now since I had that increased infusion. I see a huge difference. Not in remission yet, but getting close I think. Don't give up on Remi (just find another place to get it)

CCinPA said...
I don't know how they decide what your dose should be if they don't weigh you. You should be getting 5 mg per kg of your body weight. So if you weigh 120 lbs you should be getting approx 275 mg of the med at each infusion. They could be giving you too little. Please find another place for your infusions. This place sounds like a quackery

I had slight response after my loading doses, but not really as much as I should have had. Doc doubled my dose to 10 mg and it's been 3 weeks now since I had that increased infusion. I see a huge difference. Not in remission yet, but getting close I think. Don't give up on Remi (just find another place to get it)

I don't know either. I haven't really been told much. But I believe the pharmacy sends 3 100 mg vials for each infusion, so I guess I'm getting 300 mg? I weigh about 137-140 right now. I think I will call another place. Thank you for the info. and your support. I'm glad you're seeing a huge difference. I hope you get into remission soon!

That sounds like a good idea! Also, give them a call and ask some questions ... like what they know about Remicade infusions ;)

Yes! Good idea. Lol. Thanks again.

My GI responded to my message telling him I was having symptoms again (although I have felt normal ever since yesterday morning so maybe I'm not flaring afterall!). This is what he said:

"Greetings Sara,

Thank you for clarifying the Remicade issue. I thought that was very strange they would change that on you. I would repeat a fecal calprotectin now and if elevated consider a dose increase in your next Remicade infusion. We should check a Remicade level and antibody level too. This needs to be done in IV therapy the day of your next infusion. I'll order both of these. You can pick up the stool kit at the CRH lab. The infusion nurse will need to look up the lab under the computer system. It will be under miscellaneous tests. If it looks like you are in a flare still, we will need to come up with some additional therapy. I wouldn't scrap the remicade yet. Often you may need higher doses in a flare since you can lose protein in your stool."

So he seems pretty on top of things in comparison to what you all have told me.

If you call your insurer they can tell you which places they cover near you and might even send someone to your home. Depends on your plan.

Thanks all. I'll have to ask about the weight-based dosing. I haven't had any symptoms since Friday morning so not sure what that was.

So, I found this stand-alone infusion center by Googling and called them. She told me it's only $150-250 there before insurance! The hospital was $1,799 before insurance. The nurse I spoke to was nice and sounded knowledgeable but the place seems a little odd, because you call this number for their corporate office. She said the locations don't have phones and you can't speak to them directly. She also said I couldn't just drop in because it's just one nurse practitioner there and she doesn't have set hours. She also said she keeps the door locked while she is there with patients due to HIPPA laws. Wth? It's metroinfusioncenter.com.

Do you go to a hospital for yours? Wow, that's a crazy difference and my deductible was paid long ago, lol.

OMG. I am freaking out. I'm on with insurance and now they're tellin gme I owe 10% of the actual remicade itself!!!!!! I signed up for that $5 copay and thought that's all i had to pay?! The next hospital bill is for $9,000 for my second infusion and that includes $8,000 for remicade itself. I have good insurance...blue cross blue shield.

Really? Wow. I have the credit card from them, but I thought that was just for the medicine itself. I did talk to someone there yesterday and they said I needed to talk to my insurance company. I found a stand-alone infusion center that sounds like it will only cost me about $42 after insurance. Sorry for freaking out on here yesterday. The hospital had accidentally charged me for the Remicade, so there was an $8,000 amount on there and it was a big mess, but they fixed that.

Remistart when I used it only covered $X per year, not every infusion. I want to say back when I used it that was ~$25K or so? However, I got billed for the remicade, which then counted towards my deductible, but I then used the credit card for the remicade payment so after 1-2 infusion I had met my out of pocket max and I paid $0 for anything medical after that.

Visit costs always depend how much your insurance picks up and what they negotiated with the supplier. One infusion center may only be $250 but there has been nothing negotiated so it's the full $250 whereas a hospital may be "$1500" but because of negotiations you only pay $200 after insurance "picks up the rest of the tab". It's finicky.

They explained it to me that it would cover up to $20,000, but that amount is of my co-pay, so they made it sound like it should cover the entire year because that max. amount is not them covering the entire cost of the medicine.

Yeah, I believe the infusion center will be about $42 after insurance. I have had lengthy phone calls with insurance, infusion center and the Janssen people yesterday and today...fun times. I cannot believe how difficult it is to find out how much something is going to cost! They said they can't give me a definite cost until I have my doctor's office send over all my paperwork. But my insurance told me although that infusion center is not in-network, the nurse practitioner who works there is in-network, so I would be responsible for 15% of the cost, which I was told would be $280 maximum. That confused me as well...the center isn't in-network but the nurse working there is and it's run by just one nurse. That also makes me worried about what if she can't get the needle in my vein and it's only her there since I've had so much trouble with that.