IVIG home infusions; a few questions

Hi folks. Apparently it's possible to do home infusions of IVIG. From what I've read, they are small infusions done every second or third day, and they take only 30 minutes or so. For some people that's a big improvement over being chained up in a day clinic for five or six hours a couple of times a month.

My neurologist mentioned this to me as a possibility but didn't go into detail. Before I follow up on any official level I'd like to hear from anyone here who is doing this.

Some questions:

- How do you get the IVIG? E.g., can ib be FedExed? Do you have to pick it up?

- Does it need to be refrigerated?

- Can you travel with the home infusion kit (and doses)? I can imagine this might be really complicated, or not. Anyone here have experience travelling with their kits?

- Any difference in effectiveness?

- Any other info you'd like to share?

Thanks!

Having IVIGs at home is the only way to go, as far as I am concerned. I have never had them in a clinic or a hospital.

They are given by home health agencies and they bring the medicine to you. Yes, it needs to be kept cold if they don't infuse right away. The length of time to infuse depends on the dosage and drip rate of the medicine. Mine took about 3 hours and this was twice a week.

The nurse would stop by the pharmacy prior to the visit to pick up the med. After doing my vitals and prep and IV hook up she would stay for little bit to monitor. If things were going well she would leave. The portable pump would beep when done or if there was a problem with the drip. You would want someone to be there with you for assistance. After the drip was complete my husband and I would flush the line, pinch off, remove the IV and bandage it. All was good till the next visit. It there were to be a problem, we would call the nurse to return.

It's great. Many times I was already in my pj's and ready for a nap in my own bed.

It is my understanding to be eligible for home heath services, one needs to be pretty much housebound, but this was not my case as I was till employed at the time. I even had one treatment at work one day.

There is a portable pump in a bag (like a fanny pack) so that you can still be mobile while infusing. One can travel (as in a car etc.) but I'm not sure by travel if you mean going out of town or flying or train etc. That I think would be impossible because if you had a problem who would you call? The home health team that sets it up will monitor and teach you how to take it out when done or fix a kink in the line etc.

I have received IVIG both in the hospital and at home. For me, home infusion is the best

Frequency and amount will depend on the individual treatment plan as prescribed by the treating Dr.

It took my insurance almost three weeks to approve the home infusion. I use walgreens infusion services. On the first visit they sent via courier all my initial supplies including iv stand and pump and IVIG. Each following infusion my IVIG is sent via courier including any replacement supplies and medicines the night prior. As of yet I haven’t had to refrigerate just keep the supplies in a cool dry place Plus room temp IVIG feels so much better than cold

The day of, a nurse comes connects me and for it takes about 4 hours. The nurse monitors my vitals temp, heart rate and blood pressure. On infusion days I work from home and don’t travel I suppose you could but I’m not sure the nurse would want to go lol plus for me I take Benadryl prior to infusion and many times fall asleep during infusion

As for effectiveness it’s the same for me however I get to be in the comfort of my own home The infusion company takes care of everything so less stressful than checking in to the hospital

Are you speaking of doing it yourself via needles in belly fat and a pump?

I get my IVIG at home, its the same as going to the hospital but my nurse comes to my home. my infusion takes about 4-5 hours. but im on my couch and have a little back to carry it around so im able to to get up and so whatever I choose.

mine in delivered by the home infusion company OR UPS depending on the weather or how fast it has to get it.

Never has a problem.

Im a "hard stick" ,so I found my nurse that is amazing and I only allow her to come.

you have many rights in choosing things when it comes to your health, please be sure to know this!

Good luck

I’m glad you all are able to have home infusions. My neuro does not want me to go this route. I have my infusions at a private clinic inside a hospital. I had a choice of this clinic or the hospital clinic. The purpose of having it in a clinic or hospital is IF you have a problem that there is almost immediate help besides the nurse. Some people have all kinds of side effects with ivig. I went for a year and a half before I had any side effects and then during one of my treatments, my blood pressure went out of sight. Had to get help to get it lowered. It was caused by the ivig and remained slightly out of control for a couple of weeks. Each of us has to make our own decisions, but I appreciate being close to help if I need it. It is more trouble to get up, get ready, and go to the clinic, but an ambulance ride to and from my house is over15 to 20 minutes. I have considered home infusion many times, but the risks for me out way the convenience and consequences. I sincerely hope this helps and is not too discouraging.

Guys, we provide IVIG for CIDP patients at home every day. It’s interesting to hear from others who receive it at home, and it sounds like most have had a good experience. As for travel, we have arranged for infusions in different locations for our patients so they don’t have to miss their dose, and they can still be free to travel. One thing in choosing a company is that the nurse stay during the entire infusion. As mentioned by Marvin, a reaction can happen at any time and if the nurse is there, then there are no worries. We have a number of things we can do in the home when a mild reaction or side effect pops up. Please feel free to send me a post with other questions or concerns. Everyone have a great day. Thank you. Lauren

I get IVIG at home too. I found it was cheaper for me to have home infusions instead of at a center. My home infusions are covered 100% where the in-center infusions are only covered 80% - no brainer! I like not having to go anywhere and to have the infusion in the comfort of my own home. I also feel safer about getting an infection such as MRSA or some other staff infection. More bacteria at the infusion center. I did try giving the IG go myself one summer via SubQ route. I would give myself smaller doses under the skin twice weekly instead of the larger dose IV once every 4 weeks. I did not like the subQ route as I felt it was way more invasive to my time. Yes, it was nice to be in control of when I got the infusion. I could do it after work or wait until just before bed - no nurse to wait for. But it was so much more invasive. I was giving myself a stick every few days. The SQ infusions took almost as long because you have to wait for all the fluid to run into the subQ pocket of skin. I also had to use three needles in my belly each time. They did hurt and I did get a local reaction of redness and itching at each site. So after a few months of SQ I went back to IV. I don't get side effects either way so I am lucky enough to be able to choose. But I do hear that the chance of side effects goes way down with SubQ dosage. Oh, with SubQ you can take the pump with you and travel if needed. I would take it to work some days when I was very busy and do it there.

I have been receiving IVIG infusions for more than 8 years. The first year or so I received them in a hospital but thereafter I have been getting them at home. A nurse “sticks” me and stays with me during the infusion, approximately 3 1/2 hours for two consecutive days every two weeks. Supplies are sent monthly via UPS. I refrigerate the meds(Gammagard) but they are quite stable. I have never had any side effects but that is clearly highly individualistic. My nurse is very flexible so we adjust times and days to fit our respective schedules. I found the hospital setting somewhat of a hassle, although the nurses were great, so highly recommend the home infusions if possible.

Hi folks. Apparently it's possible to do home infusions of IVIG. From what I've read, they are small infusions done every second or third day, and they take only 30 minutes or so. For some people that's a big improvement over being chained up in a day clinic for five or six hours a couple of times a month.

My neurologist mentioned this to me as a possibility but didn't go into detail. Before I follow up on any official level I'd like to hear from anyone here who is doing this.

Some questions:

- How do you get the IVIG? E.g., can ib be FedExed? Do you have to pick it up?

I have been receiving home infusions for the past six months and I hope to never have to go to a clinic again. my doctor put in the order. The infusions and all materials are FedExed to me by the company that manages the infusions and provides the product. I am really thankful for this. Prior, all my infusions were in the hospital as an outpatient was somewhat complicated to get there. I have to get five consecutive days of infusions each month. my infusions are long — about four hours. But I wouldn't trade the comfort of being at home for anything.

- Does it need to be refrigerated? my products don't need refrigeration, but mostly kept in a room temperature of between 33° and 77° Fahrenheit.


- Can you travel with the home infusion kit (and doses)? I can imagine this might be really complicated, or not. Anyone here have experience travelling with their kits?

I don't know how this would work because a nurse is present the whole time to monitor vitals and keep records. Others may not be comfortable with this, but it works for me.

- Any difference in effectiveness? none.

- Any other info you'd like to share? I really think it all depends on what works best for you.

Apparently, home infusions are only available in large population areas. I have to drive for 3 hours one way and stay in a hotel overnight to have mine performed in Albuquerque, and they are done at an infusion center that is overseen by doctors on duty and with a large medical staff. I do feel very safe there as the infusion pumps always need attention of some sort throughout the process.

Thanks for the replies, everyone. I should have been more clear in my original post; what I'm referring to (as GonnaGetBetter asked) is self-infusion via subcutaneous injection.

I currently get IVIG every two weeks at a clinic about an hour away. The travel is not a problem as I travel 45 minutes each day in roughly the same direction to get to work, so its just a small diversion. Oddly, I almost look forward to it, as the clinic is nice, the people are friendly, etc., and it's a nice excuse to just sit and read or watch videos on my iPad for most of a day. Like a mini vacation almost.

But I am curious about subcutaneous injection (I like the abbreviation "subQ"). Apparently some people even do this at work. I wouldn't do that, but I want to see what my options are in terms of flexibility. I mention travel because I do like to travel, and my CIDP symptoms generally aren't so bad as to keep me from traveling. But getting regular IVIG means I can't really travel for more than two weeks, and my travel windows are very specific (leave the day after infusion, come back the day before the next infusion).

It sounds like subQ would make that even more complicated if I can't travel with the kit.

I realize that for people who have CIDP much worse than me this problem doesn't sound like a big deal. On the other hand, this is all still pretty new to me -- less than a year. But the idea that my mobility is so reduced, both in terms of immediate motor abilities, and in my ability to actually travel, sort of freaks me out. :-(

Skiptech, please email me at ■■■■■■■■■■■■■■■■■■■■. We often serve patients in remote areas because it’s difficult to get into the clinic or hospital. I hope I can help! Lauren


Skiptech said:

Apparently, home infusions are only available in large population areas. I have to drive for 3 hours one way and stay in a hotel overnight to have mine performed in Albuquerque, and they are done at an infusion center that is overseen by doctors on duty and with a large medical staff. I do feel very safe there as the infusion pumps always need attention of some sort throughout the process.

Unfortunately here in the uk home infusion is a total no-no for Ivig not for any clinical reason but the usual red tape. Until recently I couldn't even have it done as a day patient I had to be admitted to have it done so how taking up a hospital bed and not doing it at home makes any sense is lost on me

Like I said in my previous post. I don't see a problem with traveling with your SubQ pump and medications. I would think you could get a doctors ok to travel with your IG. I am getting Gamunex C and my doctor said I would be able to take it with me when I traveled if I wanted to. It doesn't need to be refrigerated, just kept at room temperature. I would think you could get some sort of approval to take it on a plane being that it is more than 2 ounces of fluid - I think people with insulin take their medication on flights. The pump is not that big and could easily fit in your carry on bag. You would also need to take the tubing and other supplies but there was not that much. I only did not like the SubQ administration because it invaded my life more than the once every 28 day IV administration. The subQ still took about 2 - 2/1/2 hours from start to finish. I currently get 35 grams of 10% Gamunex IV every 28 days. When I was giving it to myself SubQ I got less IG but more often. It didn't really hurt a lot but I found the 3 needles uncomfortable. Plus I did not like the big bulge that the fluid gave me under my skin. It took a day for the IG to dissipate after the infusion. I am not a big person so I did not have a lot of options for site with enough SQ fat to do the infusion into so I did stomach. My tummy was starting to get little hard nodules from the site reaction under the skin. I was told that sometimes the hard nodules will go away but in some people they remain. I did not want to have a lot of bumps on my tummy :-). Since I was not really saving any time doing them every 3 4- days and I really did not like having to turn my kitchen into a mini-hospital every few days (I felt the disease staring me in the face all the time where with IV I can forget for a few weeks). So I switched back to IV. But I do know that in the future if need be because of schedule issues or reaction because of IV administration I could go back to SubQ. Also look into different IG products. There is one that is a 20% solution (Hizenza 20%) that would require half the amount of IG that I was giving myself because my Gamunex is only 10%. I would discuss this option with you doctor. I didn't switch to Hizenza because I get such good results with Gamunex that I was afraid that I might not react the same way with a new IG product.

Thanks chirpybird, that's useful information. It sounds like the SubQ process is more invasive than I thought. For example, I didn't realize it required a pump and tubes; I thought it was just an injection like a diabetic taking insulin or whatnot. I also thought it took only 30 minutes (I now realize that my two thoughts together don't make any sense -- insulin doesn't take 30 minutes to inject!).

Is the SubQ stuff more concentrated, or is it the same dilution as the IVIG?

I get 60g of Gamunex IVIG every two weeks. That's three 200ml bottles. I'm trying to imagine boarding a plane with three or even six bottles of this stuff in my bag, along with a pump and tubes. Especially if I'm crossing a border (doubly especially if I'm crossing into the US -- I'm Canadian). I just don't see it happening. :-/

You get more than I got so it might be hard to do SubQ. I used the same medication that I get IV to give SubQ. It goes in pretty slow because it is thick and it is going through tiny needles that are inserted into your skin in the SubQ pocket of flesh. I had to use tubing that separated into 4 separate tubes with a tiny needle at the end of each tube. I had to stick the needles into my flesh and then let the fluid run. It takes longer than I thought too. My doctor only let me try it for my CIDP because I was on a dose that is quite low so it would be possible to do SubQ. Your dose seems much higher so I don't know if you would be able to do SubQ unless switching from Gamunex to one like Hirzenza that is 20% concentrate instead of 10% concentrate. You could always talk to your doctor about the dose you would use SQ and see if it is possible. I know I got a little higher dose when going SubQ than I did when getting it IV. He adjusted it up about 5% but not a whole lot. I also thought giving it SubQ would be like a diabetic. My sister is diabetic and she has an insulin pump that is attached to her all the time. Imagine my surprise when my nurse showed up with this big pump that you put a 60cc syringe of your medication in the pump and then the plunger is pushed by the pump ever so slowly until it is all gone. I did about 60 cc of the Gamunex each time I infused. It was clumbsy and not anything like the diabetic except the needle connection looked like her connection. Google SubQ IVIG and you can probably see what the pump looks like.

Yes, it is very possible and safe to receive IVIG at home. I am a home infusion nurse, and have been infusing IVIg at home for over 10 years. There are different protocols depending on the patient, the dosage ordered, the medication brand and who is providing the medication (the Pharmacy). The pharmacy I work for sends the medication in styrofoam coolers along with supplies via Fed EX right to the home. One of my patients likes to have it sent to the Fed Ex hub and then goes and picks it up there. It used to be required to be refrigerated, but some brands can be left at room temperature. If patients do travel for extended periods, the pharmacy will set up for the medicine to be shipped to that address and another nurse to infuse. This is the same medication that is given in the hospitals or clinics, so there is no difference in effectiveness. The nurse does stay the entire infusion, checking vital signs as they would in the clinic or hospital. An emergency kit is always in the home prior to infusion, and literature does show it is a safe alternative that many patients prefer due to the ease and comfort of doing jot in your home. I often feel it is safer because you have a private nurse, not one that is caring for several patients at once.

The time of the infusion would depend on the dose and how well the patient tolerates the infusion. If you are receiving the IVIG every three weeks in the clinic, then you would continue to receive it every three weeks at home. My patients at the is time vary from every two weeks to every 8 weeks.

I also think your doctor may be talking about SCIG which is given subcutaneous (under the skin) instead of Intravenous(IV). These are usually given weekly over about an hour. The patient and/or a caregiver is taught how to administer the dose and the nurse only comes to the house for the first few visits to teach. The advantage of SCIG is the shorter duration of the infusion, and patients maintain a steadier level of Ig, and may have fewer adverse effects. They also self administer so they could travel and take the supplies with them whenever they need too. Some patient's may not be able to do this method because of a large dose,they do not want to inject self and it is done once a week vs. once every 4-8 weeks.

I know this is a lot of information so I hope it is helpful. I also want to say that every person is different, and every one needs and reactions to medications are different, so stay informed and discuss the options with your physician. Ask questions when you are not sure, and if something is not working for you, let your health care providers know, and work on solutions together.

Excellent reply. I agree 100%!

Hi, I have been having IVIG infusions since 2006. The first 6 months I was having them in a clinic and then my doctor's office told me I would be able to do them at home and arranged for me to do that. I am a very long infusion. I take 6 hours and have them two consecutive days in a row every 28 days. I just recently moved from NH to TN and in NH the nurse would come with all the supplies and the IVIG, BUT...here in TN I am shipped all the supplies as well as the IVIG. It is shipped UPS and it comes packed in cold packs and after opening I store them in the refrigerator until the nurse comes to do my infusions. I have not traveled with the kits, so cannot answer that question for you. It is my understanding, however, the IVIG can be at room temp. At least the kind I get. There are two different dates on the bottles. One gives a date if it is kept refrigerated and the other is a date if it is kept on the shelf at room temperature. I never leave them out though as I prefer to keep it stored the way it was prior to me receiving them. The effectiveness is the same either way for me and I love having them done at home in my own bed where I feel more comfortable and it is more private. Plus, if you have them in the suite, you are sharing your nurse where as when they are done at your home, the nurse's attention is all on you, so you don't have to wait to flag down the nurse if you need something. It is also less expensive to have them done at home then in the suites (at least that is what I have experienced). I hope that helps to answer some of your questions. :-)

Thanks for the replies. I want to say again that I'm referring to SUBCUTANEOUS SELF-INFUSION, not regular infusion that happens to be at home. My mistake in the original post.

However, these replies are useful for anyone who arrives here looking for information on regular home infusion, so thanks again.