IVIG infusion

[Huckfin1]

Just wondering how people did with IVIG infusions. I've had lots of sinus infections over the past 3 years so doc thought I should start IVIG infusions. I am 56 and pretty healthy otherwise. I had chemo 4 years ago and had 7 months of Imbruvica a year ago.

[Cllcanada Top Poster CURE Hero]

You are on no CLL treatment now? Why did you stop Imbruvica (ibrutinib)?

Might look into the new subcutaneous version of immunuglobulin G replacement, it is done weekly and is self administered. Most CLL patients prefer it... it smooths out the hills and valleys that can occur on the IVIG, and the side effects are less, occasionally a rash where administered, but it usually clears up in a few hours...

~chris

[Elremsetay]

I had two earlier this year. Not difficult but make sure that the nurses use correct solution for flush (I think this depends upon the 'brand' being used). Mine required a glucose solution for flush rather than saline - solubility issue. Check - nurses sometimes seem to go through the motions without paying attention to the details - I always made sure.

[johnliston]

I've been getting 30gm of IVIG every 4 weeks since last September but still had sinus and chest infections all winter long (jan-mar). I think I have a sinus infection right now getting lots of headaches. Hope you have better luck.

john

[ReneeSusan in reply to johnliston]

I had my first ivig treatment 2 weeks ago. Have headaches almost daily and I feel fatigued and get short of breath if I exert myself. I also feel like Im getting a sinus infection, which is why my doc started me on ivig in the first place. Go figure

[AussieNeil Partner Administrator in reply to ReneeSusan]

Both are common reactions, but should be over in a day or so. You may have no problems next time. It varies...

[MsLockYourPosts Passed Volunteer]

I've been getting IVIG infusions since 2003 and have been the healthiest, infection wise, that I have ever been in my life. Personally I prefer the infusions to the at home newer types. I am out in the country and not near a facility that would know what to do if I had a reaction. If you do experience a reaction ask about changing brands. That is often all that is needed to solve the problem.

[Mrsminton]

I have had 4 IVIG infusions and had some mild fatigue the same day. The first infusion cleared up a severe, four month sinus infection. I have not had infections since I started infusions--the year before I had several different infections (UTI, sinus infections, mouth sores, etc).

[Huckfin1]

Thanks for all the feedback. I had to stop Imbruvica due to lots of sores on my legs and a few on my hands, but it did do what its supposed to.

[wmay13241]

My wife gets IVIG infusions when her IvG drops below 400, so far about once every 4 months. She feel more tired for about a week following the IVIG.

[wmay13241 in reply to wmay13241]

As recommended by NIH, my the IVIG is Gamunex-C.

[cook4650]

I have a history of ear and sinus infections going back many years, long before my CLL diagnosis. Over this past winter I had a "flurry" of them, ending up with fluid and blood in my left ear that made me totally deaf. My ENT finally inserted a tube, which was an instant relief. When I told my oncologist of this, they did blood work on my IgG, which revealed that I was in fact low. Since then I have had 2 IVIG infusions with no problems whatsoever. My oncology clinic is pleasant, calm, and all the staff are wonderful and keep a very close eye on you. I had no side effects. After my second infusion my IgG was normal. I may need more in the future, but it's no big deal.

[sunshine35]

I have been having IVIG infusions for 10 yrs. Have had sinus infections a few times a year but no pneumonia or serious bronchitis as I was having before treatments. Mine are every 4 weeks. Over years have gone from 20 to now 35mg. My infusions are done slowly to help with headaches... I'm 66 have had cancer 3 times .... CLL stage 0 .... have immunoglobulinenemia

[gwstephens4077]

I am in a similar situation. Diagnosed with sll in February on watch and wait at Moffitt.

My sinuses are terrible. How do I convince them to treat them with IgG?

[Cllcanada Top Poster CURE Hero in reply to gwstephens4077]

There are rather strict criteria set out by insurers for its use, you need your level of IgG in the blood measured, and if you have had a few bacterial infections in the past year, then your CLL doctor can make a case for you.

~chris

[gwstephens4077]

So I need to start documenting these. I"ll start. Thanks.