IVIG Infusions

[bayside64]

Have been on watch and wait for almost 3 years. Because I have had pneumonia 4 times in the last 2 years I will need IVIG infusions. I am anxious and afraid. Anyone have experience with this? My first infusion is in 2 weeks. Thanks.

[MartiP2009]

I get the infusions every 4 weeks have been doing this for over a year. Sometimes I have a little nausea, nothing major, but I do get a headache for about a day. Nothing earthshaking you’ll be just fine. What I did find out is I need them to do it slowly, ustally takes about 3 hours. Good luck!

[mrsjsmith]

Hello Bayside,

I have also been on them for over a year. They should start you off at a slower rate and then build up gradually. They should also do this over several months. Where I go they check back with the rate they started with the previous month.

My only side effects is tiredness as I am given anti histamine to start with. But do take something to read and plenty of food to snack on, as I find boredom the worst part of the treatment.

But don’t worry.

Colette

[AussieNeil Partner Administrator]

I've posted about my experiences here. healthunlocked.com/cllsuppo...

Tiredness is a common reaction, even without premeds (which aren't by default used in Australia). I have switched my subcutaneous IgG infusions to the evening but am sometimes still more tired the next day. It doesn't always happen, strangely, but then not every infusion is the same. I experienced considerable light headedness only once in the year I was having them 4 weekly, due to dropping blood pressure.

It's well worth having them for the immunity boost that reduces your risk of hospitalization from infections.

Neil

[MsLockYourPosts Passed Volunteer]

16 years of monthly, and recently every other month, infusions. I take one Tylenol and one Claritin as premeds. Friends get steroids and IV Benedryl - it seems to be a matter of doctor preference.

My infusions are always started slowly, with the rate bumped up every half hour until I get to the maximum rate allowed ( that can vary from one center to the next). In 16 years I have only had one reaction. I spoke up right away, and my infusion nurse had everything under control in minutes.

If you feel anything is even slightly off, let your nurse know immediately. Usually the infusion is stopped, more premeds are added, then the pump is restarted at a much slower rate. If you react to one brand, that brand is put on the list of drugs you react to, and no longer used. It isn't a matter of one brand being better than another, just a matter of making a change.

IVIG gave me back my life. I was living from one infection to the next and antibiotics were no longer working. I have come to see my infusion days as a time to catch up on things - e-mail, reading, whatever - with no interruptions. I do take food with me. I have no side effects afterwards.

The two most important questions to ask before they start, are where are the bathrooms, and is my pump running on batteries, or do I need to unplug it to take a walk. As someone said in a recent post, all of that fluid will run through you.

Let us know how it goes. If you have more questions, there are many here who get IVIG who can answer them.

[annmcgowan]

I had infusions for 6 months without any side effects. I hope this is your experience too. The staff watch you closely and jump in quick where necessary so try not to worry.

Ann

[mrsjsmith]

Morning,

One more thing re my experiences. When my Hospital used another supplier for the infusions my nurse went back to the beginning and started with a slow rate, just as an extra check on any reactions.

Colette

[W00dfin]

I began receiving IVIG during cold/flu season at about 4 years into my WW due to pneumonia. I had so many other infectious diseases that they started giving IVIG year round. I am still on year round IVIG after going through FCR, remission, relapse and now Ibrutinib. I have had a single negative reaction during the 10+ years of IVIG. It coincided with my first IVIG after starting Ibrutinib. I had swelling in the hand/wrist of the arm that they used for the IV. I took Benadryl on advice of the pharmacy and it gradually went away. I seem to have good immunity, only one cold bad enough to go to doc in the last 15 months since starting Ibrutinib. Best wishes!

[BeckyLUSA]

IVIG has been a Godsend for me. Started them 6 months after diagnosis due to numerous sinus infections. Since September 2016 have had them monthly to bimonthly depending on the season. During cold and flu season, I have them monthly. This year doctor tried to wean me to every other month, but both times we tried, I got very sick at around 6 weeks. We are now trying every 6 weeks. I go Thursday for my next one. Hopefully I won’t catch anything before then, and we will see what my IgG number looks like after six weeks. I have had no side effects except a couple of days of increased tiredness. As stated above, be sure to pack snacks and something to do. Also, make sure there is someone there to drive you home, if possible. I am usually still a little sleepy when I’m done due to the benedryl. Good luck, I’m sure you will do fine.

BeckyL USA

[SeymourB]

Bayside64 -

I urge you to ask about SCIG as an alternative, if you can. It is subcutaneous immunoglobulin rather than IV.

Studies have shown it is tolerated better than IVIG, probably because it is more frequent lower dose that causes fewer reactions. In addition, it can be given at home instead of in a clinic. It's a smaller needle. My current dose is done infusing after about 45-50 minutes. In addition, my wife helps me with it, and feels much less like a helpless observer.

I've been on SCIG for 3 months now, waiting for the 1st IgG blood tests to come back to see if we need to adjust the dose. I'm feeling generally more energetic, though still napping daily, and less afraid to leave the house.

=seymour=

[AussieNeil Partner Administrator in reply to SeymourB]

Bayside64, If you end up having IgG infusions regularly, I too would recommend switching to the self administered subcutaneous form. In addition to the advantages noted by Seymour, you also achieve a much more even IgG level, due to both the slow diffusion of IgG from the subcutaneous "bolus" under your skin and the weekly top-ups. I've posted about my subcutaneous IgG infusion experiences here: healthunlocked.com/cllsuppo...

Neil

[thb4747]

I’ve had about 40 IVIG infusions in recent years with absolutely no issues. Because they keep me free of infections I have a very positive attitude towards them. I get 24mg every 4 weeks (2 bottles) and the process takes about 2 1/2 hours. I’ve been approved to receive these infusions every 4 weeks for the rest of my life. Long may it continue!

[happyclappy]

I'm just off now for my 3 weekly IVIG then into work around 11am, trucking up the M1. The 30ml infusion used to take about 3 hours but I've been on it 6 years with no hassle so they don mess about now, just pump it straight in.

I'd rather have the infusions than pneumonia any day!

[E-Lynn]

Theoretically, I'm supposed to get IVIG every three months but got a bit sloppy with the scheduling and realized, after having a sinus / respiratory infection for a month, that it had been almost a year. Mine are pleasantly boring. I take a tylenol and a benadryl pill then same as lockmeup or MsLock or whatever my Gazyva Girl partner is called, the speed of infusion increases every half hour and I am done in about 3.5 hours.

[wmay13241]

My wife gets an IVIG infusion every 4 months when her IgG drops below 400; so far she has had 7 IVIG infusions. So far her only side effect is some tiredness that lasts for several days.

[bayside64]

Thank you so much to my new friends who have offered me insight into their lives concerning IVIG infusions. I am very grateful to you and will keep you posted. Do I need to request Benedryl or Tylenol as some of you have taken before the infusion or is it the doctor's decision?

[AussieNeil Partner Administrator in reply to bayside64]

Given premeds come with potential side effects, I'd suggest trying without to see how you go...

[bayside64 in reply to AussieNeil]

Thanks so much for the suggestion. I do appreciate your thoughts on this.