IVIG: Wondering if it's right for me? Your experience?

[suz02]

Had anyone with CLL and on ibrutinib had IVIG treatment? I'm thinking about it -- but would like more information; eg side effects, duration of benefits, etc. (Iwas inthe ICU rhis summer with viral pneumonia after a trip to Israel).

[cllady01 Former Volunteer]

Suz, do you mean your Dr. is saying he wants to administer IVIG infusion, perhaps for low Neutrophils?

[AussieNeil Administrator]

Now showing are lots of related posts you can read, with this healthunlocked.com/cllsuppo... an excellent start.

Are there specific concerns you have? The primary reason you were offered them was to hopefully prevent another hospital stay due to a life threatening infection!

Neil

[MsChief]

I have been on IVIG for > 2 years administered at the Hospital Cancer Center, for severe continuous sinus infections unabated with antibiotics. I saw an ENT MD, treated with various antihistamines, have lost hearing in one ear. IVIG, I feel, saved my life as nothing was making a difference prior to the infusions. My immunglobulin G level is checked monthly. At the time of my CLL diagnosis, I was treated with Treanda infusions x 2, and Rituxan infusion x one which caused a severe allergic reaction requiring a 3 week hospitalization for neutropenia. My IG never returned to normal after the Rituxan. as of now it goes up with the infusion then goes down after about 2 1/2 weeks leading up to the infusion. However I have not had a sinus infection since so I am extremely grateful. I have other issues namely reflux, a bad hip and dental issues but at a month before my 78th birthday I’m doing pretty well. Some patients can do it themselves subq in the stomach but here in the U.S. that is not an option so I go to the Cancer Center every 4 weeks for the infusion. i I am also on low dose Ibrutinib. I highly recomnent IVIG - no side effects to date. Best wishes, M.C.

[AussieNeil Administrator in reply to MsChief]

Some of our US members are on subcutaneous IgG. The choice seems to depend on the relative insurance cover benefit.

[W00dfin]

I was started on IVIG during WW due to multiple infectious diseases. I continue to be on IVIG in remission due to post FCR immune deficiency. It is very beneficial in preventing infection.

[suz02 in reply to W00dfin]

Thanks for sharing! No side effects?

[W00dfin in reply to suz02]

Only one unusual reaction in all of the hundreds of monthly IVIG sessions I have received since 2008. About 5 hours after the IVIG I experienced swelling in the hand and wrist on the arm with the injection site. After consulting the pharmacy at the clinic we determined that the swelling began about the same time as the Benadryl pre-med would have been wearing off. I took another Benadryl and it went away. No idea what might have caused it.

Aside from that I have not had any side effects from IVIG.

Happy Holidays!

[Nracll1944]

I started IVIG 4 years ago while I was taking Ibrutnib and have not had infection issues since then and no side effects other than being tired for a day after. I did stop Ibrutnid earlier this year because of low neutrophils but have continued IVIG

[suz02 in reply to Nracll1944]

Thanks for sharing! Have your numbers remain stable after stopping Ibrut?

[BeckyLUSA]

Have been doing IVIG every 6 weeks for over 4 yrs. I started on Ibrutinib a year later. Like you, I was having up to 6 sinus infections annually which were not helped with antibiotics. In the 4 years since going on the IVIG I have had 2. And they were both during the week before I got my infusion. They are time consuming and expensive, but covered by insurance and they have changed my life.

[suz02 in reply to BeckyLUSA]

Thanks Becky -- Have a Blessed New Year!

[Imbub]

I have been taking ibrutinib for 18 months and now also on ivig every 4 weeks since May. A wee bit tired the next day but other than that all is good. I might add that I take Tylenol and benadryl in the morning before my treatment. Good luck to you.

[suz02 in reply to Imbub]

GOOD to hear! Thanks and Happy Holidays!

[Newdawn Administrator]

I had IVIG monthly for 15 months whilst on Ibrutinib. Absolutely no issues or side effects. I went in, was hooked up and went home content in the knowledge that it was helping to prevent the severe respiratory infections I’d suffered prior to starting it. A bit tired but nothing more. I was permanently bruised from the cannula however.

Go for it, it’s very worthwhile.

Newdawn

[Frogharding]

I've been on ivig every 4 weeks, with and without ibrutinib - (now Venetoclax) for the last 5 years -- it's been transformational, in a good sense -- I no longer get endless chest infections that lay me out for 6 weeks at a time (I used to have 4 or 5 a year) -- I give thanks every day for my good luck in being given this infusion. No side effects at all and able to make plans which I'd given up doing as I was always ill. It's changed my life for the better.

[suz02 in reply to Frogharding]

CHEERS! That is so wonderful to hear. Thank you

🙂!

[SofiaDeo]

Not trying to be a killjoy, but if you are having it as an infusion it is possible (not likely, but possible) that you are one of the rare people that has what we call an "infusion reaction". It's resolved by slowing the rate of infusion or temporarily stopping it, and treating any symptoms. It does not mean that you are truly allergic, and as you continue to get the treatments this reaction usually slows then stops, as your body adjusts. Some people's bodies just freak out the first few times they get an infusion! So if you are one of the unlucky ones, don't panic, just let the nurse know if you start feeling really "off", or your heart starts pounding, or whatever. The nurses will be checking you a lot anyway if its an infusion, but feel free to call them sooner if you start feeling bad. The benefits are definitely worth any temporary discomfort! And if you can get the subcutaneous injection, go for it. (Although some docs like to do one infusion first before allowing subcutaneous injections.)There's no possibility of "infusion reaction" if there's no "infusion".

[DelrayDave]

My experience mirrors other posts. I get IVIG every 4 weeks. I am on ibrutinib. I have had this now for 4 years. It has eliminated chronic bronchitis I had that antibiotics did not help. As a Medicare Part B procedure there has been no cost to me. No side effects except a bit tired the next day.

David

[Anilbhard]

Pls first get your IgG tested . Here it’s unit is: 700-1200. But when mine came below , my Onco advised to take it , and I took 30 Ml dose each month along with Ibnutrib in day care.

Now they recommend to take it during winter if IgG is low due low immunity issues with CLL patients.

[AussieNeil Administrator in reply to Anilbhard]

Generally you need to have both have had severe illnesses - e.g. bad enough to require hospitalization for IV antibiotics and have your IgG fall below a threshold, which varies by country. That's 400 in Australia and I think the UK and 500 in the USA to meet the IgG threshold requirement for IgG infusions. Some of us have much lower IgG counts than the official threshold, yet can avoid serious illnesses, so don't need infusions.

Neil

[SlowCLL]

Suz02,As I type this, I am sitting at my desk in my home office receiving a subcutaneous infusion of 50ml of a liquid solution containing human immunoglobulin. I do this every Monday morning because I have been diagnosed with hypogammaglobulinemia. It takes me fifteen minutes set up the equipment, and the infusion will be completed in less than an hour, so I will try to keep this message short.

I have been doing subcutaneous infusions since 2017, before that I had monthly in-hospital infusion of 350 ml IVIG. The in-hospital infusions were begun in 2016 in response to a series of pneumonias that were not controlled by antibiotics. These infusions worked wonderfully well to control infections, but I began having reactions that caused full body rashes. After working with an immunologist, I switched to subcutaneous infusions and have not had any negative reactions.

Self-administering the weekly smaller dose subcutaneous infusions took some time to get used to, but I much prefer them to the larger dose in-hospital infusions. For me, subcutaneous infusions are a time saver, and I do not get a noticeable dip in effective coverage during the last week or ten days of the month. Also, the last time I was in my local hospital I was exposed to someone who had Covid-19.

Note, in the US insurance coverage for at home subcutaneous vs in-hospital infusions is different.

The best advice I can give to you is to work with an immunologist on this, they get all of the issues sorted out better that the hem/oncs.

Good luck,

Owen

[suz02 in reply to SlowCLL]

Thank you so MUCH for sharing. I will definitely look into this; e specially since i was most worried about side effects of IVIG.