Remicade - mobile techs?

[OrangePixyStix]

I have been on Remicade for a year now and my doctor said I could start using a mobile technician that would come to my house to administer the IV (rather than going to a hospital day-surgery center).

I wanted to ask if anyone on here has done this yet.  I'm assuming the mobile tech stays there the entire time (in case of a reaction), do you normally get the same tech each time or a different one?  

Also, do they bring the stand to hang the IV so you can walk around, or is it a setup where you have to pretty much stay in the same spot? 

Any experience or feedback about this would be great.  If I don't get a response, then that's okay, it's new to me but if anyone else goes this route, my first appt would be in early January.

[bcv513]

I have no experience with Remicade or Humira, sorry. I think rikki over on MM takes one of them. Maybe you could send her a PM? Good luck

[aimeedyan]

When I was on it, they required a doctor on site so I'm surprised they've moved to allowing people at home with just a tech. I probably would have jumped at the chance to do it at home in the beginning but after having some severe reactions towards the end, I was thankful to be in a hospital setting. Even though it stinks

(I was on it 2 years - reaction free until the last 2 infusions)

Are you comfortable not having a hospital/doctor nearby?

Good luck!

[OrangePixyStix]

Hmm, thanks for the feedback!

Catlawdy , my GI doc was doing the verification withe the mobile physician on insurance approval and setting up, but she didn't give me very much information on it yet. I do have an appt with her in a couple of weeks so I will see if I can get contact numbers for the group for information.

aimeedyan , I have been on it for a year now and was told after a year I would be eligible to start on home-infusions as long as I hadn't had a reaction up to this point. I guess it's because I'm at a steady dosage now and with the loading doses there is more risk of a reaction. I'm not sure but now you have me worried if something does happen. We have urgent care centers really close by my house, but the main hospital is about 10 mins. May I ask what type of reactions you had? Was it lethargy or nausea, or worse than that? And what type of thing did they do when you had a reaction?

I'm not exactly sure what to do yet but I am having annoyances with the hospital so I was ready for a change of some sort. Maybe I can ask about doing an infusion center instead of a mobile tech, at least for the next few treatments.

[aimeedyan]

I don't want to scare you! It really was a wonder drug for me - I loved it so much and was pissed off when I reacted. Humira and Cimzia have done okay but not as good as Remicade for me.

My reaction was that my heart rate went (way) up, my throat started to swell up, and I couldn't breathe. It happened at the same time very quickly. I was already inpatient at the hospital and getting it in my room.

I had my infusions done at 4 different places over the 2 years and by FAR my favorite was in the infusion center at an oncology office. They are so nice, on the ball, and efficient. The hospital (as outpatient) was my least favorite

Reactions are pretty rare. The longer I have this disease, the more I react to things. Not sure why, and I don't know that that happens with everyone. I've always chosen the harder road in life LOL.

ETA: just saw you asked what they did. I was in the room alone with a visitor when it happened - she noticed my face/chest started to flush and my breathing got shallow and I stopped talking. She called the nurse and no one answered so she raced down the hall and pulled a nurse out of a room. I don't remember most of it but I know there was oxygen involved and I was very hot, laboring to breathe, and uncomfortable. She - I learned later - was completely freaked out and I felt so bad (but thankful she was there!). 

[OrangePixyStix]

@aimee , thanks for the follow up.  That's so scary about your reaction, but I am glad you had someone there with you to act quickly and get help!    I really do appreciate all of your feedback regarding your experience.

Nov 27, 2013 9:36:18 GMT -5 Catlawdy said:

What are you annoyances a with the hospital?

I guess the main thing is the way they do the coding for insurance/billing and how they include items that are not even at all comparable to what they should cost.    The main reoccurring charge I keep having to "dispute" is ridiculous...  my insurance apparently rejects the code for "Education & Materials" for $75.00 that gets billed every single time I go.  I started questioning what it was since I don't remember getting any materials or lectures, especially since I've gone more than 7 times now and know all I need to know about the drug and it's effects. 

Turns out that charge is for the "discharge instructions" that the nurse gives me at the end.  Basically they are charging me $75.00 to tell me to call them if I feel any discomfort, drink fluids and rest up.   Ummmm, yeah not worth it.   Then to add up $75.00 per treatment scheduled every 8 weeks, well that's a whole pile of wasted money on practically nothing.     It takes me 4 months to dispute the charge and eventually have it removed, and the nurses claim when I go in for treatments that they can't just exclude that billing code because it's all put in as a package.   So, that is just one annoyance, but it's probably the one that has caused me the most frustration. 

[OrangePixyStix]

Just an update, I did have my first mobile nurse come for an infusion this past Friday and really had a good experience overall.
The closest infusion center that my insurance would accept was a bit further than the hospital I had been going to, so I decided to try out the mobile infusion option.

There are urgent care and emergency centers within a mile of my house, so in case of a reaction I felt good knowing there were at least some resources close by, but the nurse also did not leave the room for any reason other than to wash hands and use restroom, so she was prepared to act swiftly in the case of a reaction.

Thankfully it went as smoothly as all the other infusions have gone so far and it really was so much easier/quicker just being home and having the drug come to me for a change. The only thing that made me uncomfortable was that the drug package came in separate vials that the nurse had to mix together in the IV pouch, which she had never done and claimed the pouch is usually pre-mixed when it arrives. She did have to call the pharmacy and confirm the right solution of Remicade to Water was provided before she did the mixing, but I guess everything was correct (just in multiple vials instead of a single pouch like she is used to).

In case anyone had been curious or anything, wanted to post about my experience. The billing and all that hasn't come through yet, but hopefully there won't be hidden codes that insurance won't cover like is always the case with the hospitals!

[OrangePixyStix]

Oh, and the drug delivery didn't bring a pole stand for the drip, so we used a tall stand alone lamp with a wire hanger through the pouch hook to keep it upright. The nurse said she will bring one of her extras next time, but I was able to move around freely by carrying my pouch around when needed.

[polarbearfans]

Glad everything went well. It sounds like the at home is much more convenient for you. I'm starting remicade tomorrow (well if this last appointment goes well lol) Turns out the infusion center is just down the street for me.

[OrangePixyStix]

Jan 7, 2014 12:04:59 GMT -5 polarbearfans said:

Glad everything went well. It sounds like the at home is much more convenient for you. I'm starting remicade tomorrow (well if this last appointment goes well lol) Turns out the infusion center is just down the street for me.

Good luck on your first round, I hope it really helps you and brings some relief! 
Good to hear your infusion center is close by, definitely makes it easer if you need to schedule pickups or have someone bring you some food.

Make sure you take a blanket, I always use one even when I don't go to sleep because the IV makes me cold. 

 

[polarbearfans]

Jan 7, 2014 14:42:32 GMT -5 OrangePixyStix said:

Jan 7, 2014 12:04:59 GMT -5 polarbearfans said:

Glad everything went well. It sounds like the at home is much more convenient for you. I'm starting remicade tomorrow (well if this last appointment goes well lol) Turns out the infusion center is just down the street for me.

Good luck on your first round, I hope it really helps you and brings some relief! 
Good to hear your infusion center is close by, definitely makes it easer if you need to schedule pickups or have someone bring you some food.

Make sure you take a blanket, I always use one even when I don't go to sleep because the IV makes me cold. 

 

Thanks for the pro tip on the blanket! Even with the heated chair I was cold and I was very happy to have my blanket lol they had blankets but they were very thin and not comfy.