If I stay clear of further bouts of leaking then my immunlogist has suggested I can administer the IVIG treatment myself after training/practice. This is a very attractive option to me as it would be much more convenient. Just wondering if anybody else does this or has come across it.

Hi krogers, I make my monthly infusions at home since 2005 without any problem. I meet the nurse at the hospital (only 5 minutes by car from my home). The nurse places a catheter in one of my veins. When I return at home I connect the infusion. When the infusion is complete I remove the catheter and it's over. Very simple, no hospitalisation. Claude Pfefferlé

I have serious doubts that most state-run health or private insurance plans, or most hospitals or clinics, would approve of such self-administration. First, IVIG is very expensive, so whoever is paying for it usually wants to ensure that (1) it was indeed infused and properly so; (2) it was infused to the right person -- their patient/insured, and not resold to someone else; and (3) it was infused in a monitored manner without causing harm to the patient/insured -- and a blood product like IVIG can definitely cause allergic reactions or troubling changes in blood pressure (because of the fluid volume/speed), or other side effects that could endanger the patient/insured. There are potentially serious liability issues for whoever sends a patient home with such medication usually not intended or approved for self-administration. Second, in many jurisdictions there are policies against, or guidelines about, the discharge of patients from hospitals or clinics with IV lines or other catheters inside them, because they could be prone to abuse (e.g., to inject other drugs) or cause infections if not properly cleaned, or they could even lead to a hemorrhage if not properly removed. These are also potentially serious liability issues. Third, beyond the fact that the IVIG must usually be measured and mixed in sterile conditions -- namely, it must be customized -- for a specific patient, and it must be temperature-controlled and the like, there also are practical risks that the IVIG container could break -- sometimes it comes in glass containers -- or that it could leak or develop air bubbles or other infusion-related issues which a patient may not be able to handle safely on his/her own. To give a concrete example, when I get my IVIG at a hospital infusion clinic in Washington DC on Day #1, they let me go home with the IV still inside me on an overnight basis -- properly protected and wrapped, of course -- such that it can be used again on Day #2. However, when I get my IVIG at a hospital infusion clinic in New York City on Day #1, they remove the IV at the end and thus they have to insert a new one on Day #2. The reason is a municipal public health regulation that forbids medical centers from discharging patients with IV lines in them, out of concern for what could happen once the patient leaves the controlled medical environment. And hospitals and clinics there like it that way, of course, because they don't have to worry about things going wrong -- and their being liable -- for whatever happens once as patient leaves their care. We do have some patients in this community who get their IVIG infusions at home, but under the supervision of a visiting nurse. In one case, a patient is given his infusion at home by his wife, but she happens to be a nurse and the convenient arrangement was approved by all the parties concerned.

In my area (Alberta, Canada), any IVIg taken off-site would have to be paid for by the patient...and thus far too expensive to consider for anyone as a home treatment. Also, my husband has a port which requires special certification to access - so a nurse is required. If he's going to go into hospital to have his port accessed...he might as well stay there for the day and get his treatment. :) I have heard of daily IVIg injections that can be done at home, but I don't think you can get those in doses high enough for SCLS. And if you could, I would imagine it to be quite cost prohibitive.

My nurse has also suggested that I could administer Ivigg shots weekly to myself. I have not looked into it, because I am worried about the complications and the potency. I just wanted to let you know that the medical professionals taking care of me brought it up as well.

I know that here in London (King's College Hosp) they do indeed have many patients who do self administer IVIG funded by the National Health System (NHS), so it is definitely santioned as ok. It is therefore possible here; I guess we has less legislation. Good to hear that you have done this without problems Claude.

Krogers Are you meaning SUB-Q IG instead of IVIG for home infusion? I checked on this and it really would be , as Arturo calls it, Russian roulette. If you really mean IVIG, Claude is an MD and knows what to do for an emergency. I think we non-medicals need to stick with nurse given infusions. I have my nurse come to the house for my infusions, but she is certified for IVIG. Not every nurse can infuse IVIG. Walt

I asked my insurance company if home infusions were possible and they promptly said, "No". I also have a personal story that shows why it's best to have it done in a controlled environment. When I had my December infusion, I had a viral infection of some sort -- fatique, congestion, etc. A few days after the infusion I had severe abdominal pain and went to see my Doctor and he ran some tests and found out that I had hepatitis. He tested for all the usual viral suspects that might cause this and they all came back negative. I just had my January infusion this Thursday and Friday and I have to follow up Monday to get more blood work done to see if my liver has a similar reaction. While we suspect it was viral, IVIG can in rare cases cause hepatitis. I feel great and am not particularly worried, but this experience has certainly removed any latent desires I might have to get the infusions done at home. The infusion center at the hospital is where I'll be!

Walt This was IVIG not subcutaneous which delivers a lower dose.

Mark I don't quite follow your post. If IVIG gave you hepatitis whilst having it in hospital how is this a worry for self administration. If I have understood, you had to go to the doctor a few days later to have blood test so had left the hospital anyway.

The only point is that this incident served to remind me that it is not a risk-free procedure and even though we have not established that IVIG even played a role in my particular case, IVIG can cause side-effects that require immediate treatment. These side-effects are influenced by how the IVIG is administered so the risk/reward ratio leans in favor of having it done at the infusion center as far as I am concerned. My situation is probably a little different than others because my doctor also happens to be at the hospital, so I often see him when I get my infusions. He came to see me on Thursday while getting my most recent infusion and discussed the need for follow-up blood work and what to do if I started not feeling well. If my situation were different and I had to travel a great distance to the infusion center and my doctor wasn't co-located the calculus might change. But right now, I feel I am very well cared for where I go. I get the same nurse each time and they save my favorite chair for me so I can work on my laptop while the infusion takes place. Altogether, the inconvenience of going to the center is worth it to me because of the extra sense of security I feel.

Interesting that you mention the hepatitis Mark as I too had severe hepatitis whilst on the clinic IVIG treatment and had to cease it. My hepatitis was diagnosed as 'drug induced and I was put on high does prednisone for several months which has left me with even more unpleasant side effects. I do remember one infusion a few months prior when I had felt particularly sick during the infusion. I do not know if the two are related but I would not want to be on my own at a time like that

I have had the IVIG infusions at home since August 2010. I have not had any problems. It makes life much easier because I can schedule it almost anytime of the day, weekends included. I had to find the right nurse. You spend one on one time for 5 hours , not like the infusion center. So you need to be comfortable with their personality. The nurse has to stay with you throughout the infusion. Walt

Thanks for the clarification Mark, I can see where you are coming from. For me it is quite inconvenient to have it done at hospital but I obviuosly don't want to put myself under any extra risk. Can anyone direct me to any information about the problems that can arrise during an infusion. I certainly will not go ahead with this unless I am totally convinced all bases are covered

Even the Wikipedia article on "Intravenous therapy" has a useful description of the many things that can go wrong during an infusion, see towards the bottom, "Adverse effects." The main problem I've encountered, beyond the issues related to vein insertion, is that the IVIG must be administered at controlled speeds, which requires a piece of equipment to accomplish, and thus a process that can easily be disturbed by the appearance of bubbles in the line or occlusions (e.g., due to movement of the arm and bending of the line). Moreover, the infusion speed itself is not set in stone, and can be varied depending on how the body reacts to the faster flow of (in my case, close to a liter) of fluid. This, in turn, requires monitoring of the blood pressure and other symptoms of patient distress. To end on a different note, let me recall that one of our RareShare members who is a mother wrote a few years ago of how much she actually looked forward to her monthly infusion appointments at the hospital. They provided a welcome break from her children and other household pursuits, and a chance to do some quiet reading, watch a movie, or listen to music -- with the proper equipment, of course, first and foremost earphones. In my case, while I use most of the infusion time to work on the computer, I find that my stays at the hospital infusion center often prompt me to reflect on existential issues of life and death -- and of quality of life and death -- in a way that I never do otherwise. It also gives me an opportunity -- sometimes depressing, sometimes uplifting -- to watch how others around me (mostly cancer patients, of course) deal with their own mortality issues. As I exit the infusion center, I often take a moment to thank God that he gave me this illness and not any of the others.

Thanks Arturo, You are clearly more spirtual than me. We all have our own situations and I can say I do not enjoy having to go for infusions every month. It is a pain and I work full time and it really interferes with this. From the problems I have come across so far there is only really the embolism issue that worries me and it seems that with periferal infusion this risk is low. However what this really means I am going to discuss with several doctors to get a good feeling as to what the real risk is.

I prefer the home infusion, primarily, due to the large amount of flu/colds going around. When you step inside the hospital, you really have no idea what you go away with. At home, I only worry about the nurse. As far as coverage in case something happens, the hospital is 9 minutes away and the e-squad is 2 minutes. I am one of us that can not use high rates of infusion. I am limited to 240 ml per hour. Anything higher and I get chest pains. It comes down to what makes you most comfortable and how you want to spend 5 hours straight. I have had one vasovagal incident , but the nurse acted quickly and it was over in a few minutes. I have had 25 months of infusions with no other problems Walt

Well stated Arturo!:)

This topic is interesting because yesterday (4-9-2013) while receiving my monthly IVIG Infusion at the VA Hospital in Florida, my nurse mentioned that eventually I may be administering my own Infusion. I currently travel over 300 miles (round trip & 5 hours) plus 3 hours in the chair every 4 weeks. It would be nice not to have to travel this far, but not sure I would feel comfortable administering my own Infusion because of the points Arturo mentioned. I have been receiving IVIG Therapy for two years now & have had no episodes!