I have been on IVIG infusions now for 4 1/2 years and have just returned from my last round of infusions. I was told at the infusion center where I go that they will no longer run my saline with my IVIG. They now run 1/2 of my saline by itself, then shut it off and start my IVIG infusion by itself until gone, then run the rest of the saline. The reason was the manufactures of the Immunoglobulin have determined this is better for the patient as when they are run together, they have discover the ‘branches’ of the IVIG will strip to some extent and this results in it not being as effective. I’m curious to know if anyone else has experienced this? It may be something you may want to investigate for your own interests. Any comments are welcome.
What brand of IVIG are you on, and how often do you get infusions?
My post refers to all brands of IVIG according to the infusion center. I currently am on Privigen as I have tried 3 other brands with poor side effects. I get infused every 3 weeks.
I just got home after my two days of IVIG and I believe they did the same thing as you just described-ran the saline before and after the IVIG- not at the same time. I’m also on Privigen
For nearly 16 years I got 400ml every 3 weeks of that good stuff at the outpatient clinic of one of the worlds leading neurological institutes. Over time the nurses tested different IV-machines and found they weren’t suitable for infusing the “thick” gooey immune globulin. About 18 month ago all 15+ old IV-machines were replaced. When I made a remark the nurse said something like “finally! these new ones work well”. Neither I or any other “roommate” ever had a saline solution running alongside.
The new way you are receiving your IVIG is exactly how I have been getting mine for the past 20 months. I was told it protects the kidneys better and so far so good, since I only have one transplanted kidney. Best wishes!
This “new” way is the way I have always had IVIG - since 2012.
I have had ivig an off of it. One day a month for 4 bottles. I don’t know if they use the saline with it. I see its hanging, but didn’t think they were using it. I will have to ask next month when I go.
I have been having privigen here in UK for 6 months and its every 4 weeks and no saline used, surprised by others how long i will probably be having it! can you take a month out? or does that mean you go back to square one? Do not see my Neurologist very often to ask questions.
I have been on IVIG for 4 1/2 years. I understand some recover slowly, or deteriorate quickly, or get stabilized. You are probably doing well as you get infused every 4 weeks instead of every 3 weeks. I suspect if you were to quit infusions for your ‘break’, you would soon be in the deteriorating scenario, which will take longer time from which to recover.
I get a Gammagard infusion every 3 weeks. The drug by itself followed by small bag of saline “flush” to get all the drug into my body and out of the IV lines. That’s it, no other saline.
Hi! do you have your infusion at St Thomas’s hospital?
Hi, no i live in colchester and go to clacton, where do you live?
I do not, I go to a dedicated infusion center.
Hi! Swallow! I live in Kent!..I have my infusions at Guy’s and St Thomas’s hostpital London…I stay there for 3 days have infusion over the course of 2…fantastic hospital, I would not be able to walk if it wasn’t for them…I go every 6 weeks…how about you?️
Hi! Skiptech!.. do you live in U.K.?️
Hi annette hunt, So you are not a million miles from me!! it helps knowing others have the same condition and we can compare notes so to speak. I have 3.5 bottles of Privigen in the one day & dose just been increased a little, i have this once a month and think it is stabilizing me. I have had CIDP for 12 years and could walk with a stick and my husbands arm up until 2015 when i had a bad relapse so now i can only walk about indoors with a walker and use a wheelchair outside. If you are having infusion over 2 days sounds like you are having a larger amount than me? or perhaps it is not Privigen? wonder why some have it every 3 weeks and others like yourself every 6 weeks. How long have you been having them? have you ever taken time out?
Hi Annette… I live a little ways from you. I’m in Capitan, New Mexico USA. I have to travel 185 miles one way for my infusions (300 km). I go every 3 weeks.
Never had saline in my 2 years of Gammunex-C. Saline was supposed to increase the side effects especially the renal ones. My infusion center (originally Vanderbilt) only used saline to flush a line. After 2 years and an unsatisfactory result, IVIg was discontinued. I now need a walker again b/c my legs are like spigetti. BobN
Hi! Swallow!..I was on privigen but it didn’t work!..I have been on octogam didn’t work, viagam which was brilliant but company went bust…now I am on flebogamadif which is working I have been having for 6yrs but had CIDP for 10yrs…4yrs undiagnosed I think privigen is double concentrated that’s why you probably don’t have to have as much as me…plus I have to have mine put through really slow as I get bad migraine and vomiting😔So each day takes about 7 hours…do you have side affects…I did with privigen made me ill😊