Infusions at home

[dave13]

I got an interesting call from my insurance company today. I was asked if I would be interested in taking part in a pilot program to have infusions at home. It is currently being used in the most rural parts of the state where hospitals are far and few. The at home service will be less expensive than going to a hospital.Since I have had infusions for two years with no reactions I would be an at home candidate. I await a call from the nurse to see if I can do it. I am curious to find out more information.

Anyone have experience with at home infusions?

 

[my little penguin]

So here would be my questions for them
Most folks who have reactions do not continue with remicade infusions and switch to something else . Ds was one of those
How would the nurse handle a reaction besides calling 9-1-1
Allergic reactions can be fatal within 30 minutes to an hour if the proper meds (including epi) are not given quickly even then they can still be fatal .

How long to your nearest hospital ?
Does tha ambulance near you carry epi pens and are they allowed to give them ?
Is the ambulance service near have advanced life support ?
What meds /fluids /etc can the nurse administer in the home to stop the progression of anaphylaxis?

Regular doctors offices or clinics are not equipped to handle anaphylaxis which is why kids who have food allergies are required to challenge the foods at a hospital even with an epi pen nearby.

I am not trying to scare you but I have seen my child have an allergic reaction to many drugs including remicade as well as food /bee stings etc...
It can progress very quickly and remicade is known to have a high rate of reactions even after the first four infusions

Hopefully the person adminstering the remicade can be prepared and it can be done at home

 

[ronroush7]

Which drug is this for?

 

[Malice67]

To clarify, do you mean Remicade (sp??) or iron infusions. I would love to do iron infusions at home

 

[dave13]

This is for remicade. Sorry,I originally posted this in the remicade support group. I did a cut/paste here to generate conversation. I literally was called this morning and asked if I would be interested in at home infusions. Just to make myself clear,I am not advocating for at home infusions. It is something new to me and I want to gather information.

I share the concerns. I have had a recent prometheus test and have had infusions for two years now. I think tomorrow is the actual anniversary of my first infusion. Wow,time flies when you are having fun. Right?

I figure by starting this thread I can get questions I may not think of myself. I appreciate all input and will keep you informed.

 

[ronroush7]

Don't they usually check blood pressure while you are getting the infusion? Would you need a nurse to help with that?

 

[Clash]

ronroush7, he would have a nurse come and administer the infusion.

dave13, if you use the search function and a key word search of "at home remicade infusions" or "at home infusions" you might find the previous threads where this was discussed.

I know at various times there have been members (that live in rural areas, that have the option of at home infusions (actually I think it was some of the members only options). From what I remember it was common in the mid-western states or seemed to be as that was where the majority of the members were from. Also, there are areas in Canada where it is common.

The nurse that came and showed my son how to inject his humira shots also did at home remicade infusions for some patients. She said that all of her patients lived the fact that the didn't have to go in for the infusions.

I'd definitely ask the questions that my little penguin mentioned. My son was own humira and will soon start high dose stelara. Both are at home injections and I worry just as much about reaction to those.

 

[dave13]

Don't they usually check blood pressure while you are getting the infusion? Would you need a nurse to help with that?

Yes,they would take BP. From the brief explanation I got today,they basically set you up at home as in the hospital. A nurse is with you the whole time. An infusion is,basically,a long boring IV. It is there ability to cope with a reaction I am curious to know about,like my little penguin noted. I won't know until they call me. Thanks for the feedback y'all.

 

[ronroush7]

Welcome

 

[dave13]

O.k.,I just got a call. They have an anaphylactic kit with them during the infusion and give an epi pen to the patient.

 

[my little penguin]

Really that's it just an epi
Wow
If your considering it please have your doctor outline when to give the epi pen
Most folks who are not allergist tend to wait a lot longer
http://www.foodallergy.org/faap

It's for foid allergies but...
The signs of anaphylaxis are the same and timing for giving the epi ( see your doctor for specific to you ) should be similar

 

[Bunty]

I haven't had an infusion at home, and after my last infusion two weeks ago, it's not something I personally would consider.
I was started on infliximab last November and had the loading dose, plus another two infusions with no problems whatsoever, making five in all. The sixth was postponed due to me developing what was thought to be psoriasis, and a referral to a dermo needed before any further treatment. It's not psoriasis but nummular dermatitis so the OK was given to restart the infusions two weeks ago.
No sooner had the infusion been started, less than two minutes in, than I experienced the most frightening reaction...severe flushing, pins and needles down both arms and hands, and huge pressure on my chest. The infusion was immediately stopped, a doctor called and an injection administered.
After half an hour I was given the choice to restart or abandon the infusion. We restarted it and all went well, no further reaction although I was warned to watch out for even the smallest reaction for up to twelve days. It has made me a little anxious about my next infusion though, given that I'd not had the slightest sign of any reaction at all for the first five infusions.
I realise that this sort of thing doesn't happen to everyone but feel it worth mentioning.
Bunty x

 

[Clash]

How long was your 6th infusion postponed? One of the issues with starting and stopping remicade is that your body will quickly develop antibodies. This increases your chance of reaction and makes the med less effective for you if effective at all.

My son stopped remicade for surgery. He had a reaction as well due to the fact he had built antibodoes.

I would ask the GI to run an antibodies test before the next infusion.

 

[Bunty]

I had the fifth one on 7th April, then was due the sixth on 3rd June but that one postponed till 12th July, which was when I had the reaction.
I see the Gastro on 31st August, the week before next infusion is due, so it will be interesting to hear what he has to say about it. We're away at the moment but I think I may get in touch with the IBD team before 31st to see what they have to say.
This latest infusion is working, thankfully, bleeding and mucous has stopped completely and bowel movements returning to normal.
Thanks for your comments Clash, very helpful as I'm pretty new (two and a half years since first symptoms and diagnosis)to all this. Much appreciated.
Bunty x

 

[dave13]

Really that's it just an epi
Wow
If your considering it please have your doctor outline when to give the epi pen
Most folks who are not allergist tend to wait a lot longer
http://www.foodallergy.org/faap

It's for foid allergies but...
The signs of anaphylaxis are the same and timing for giving the epi ( see your doctor for specific to you ) should be similar

No,the epi pen is for you to keep at home post infusion. They train you and a caretaker how to use it.

I am not advertising,check it out yourselves. 'New England Life Care'. Personally,I feel safer in a hospital. I see my GI soon and am interested in what he thinks about it.

 

[FrozenGirl]

Honestly I would do it. Here Remicade isn't given in hospitals it's given in private outpatient clinics. Not doctors, just RNs. They have training in advanced life support and reactions for all the meds they give (Remi, Tysabri, etc). If the same nurse came to my house with all the supplies I would feel fine about it. She can administer epi and call 911 if need be, I'm about the same distance (maybe slighter closer) to a hospital from my house vs from my infusion center.

 

[idlebrain]

I have had a couple of home infusions while I was on Remicade. I really had no option because of my insurance policy at the time.

The infusions went fine but I was not very comfortable with the idea. I eventually went back to the hospital infusions based on my GI recommendation to the insurance company. The cost difference to the insurance company was not that significant either which is probably why the insurance company agreed.

 

[dave13]

Well,I decided not to have infusions at home. Perhaps I may change my mind later on. My GI felt a hospital setting was the best and I went with his recommendation. A safer environment.