I.V.I.G. any tips?

[luckyackerl]

Frequent infections following chemo means H.I.V.G likely according to my chest consultant. She is writing to my haematologist who already has results that haemoglobulins are low.. anyone had this? did it make a difference? Any tips? Thanks and a Happy Healthy Easter everyone...

[Yvbb]

patientpower.info/video/the...

Not much research in this field on effectiveness. Prior to treatment I had infusions for 6 months and then every 3 months infusion with gammaglobulin and it seemed to have kept more infections away from me.now that I am being treated with Ibrutinib and Venetoclax in a trial my IgG level is again very low. Again I am treated with gammaglobulin every 4 weeks now.

[luckyackerl in reply to Yvbb]

Thank you, that is very helpful.

[Cllcanada Top Poster CURE Hero]

I would ask about the self administer version which is used under the skin... it is weekly and takes under an hour to do, while watching TV... actually you can move around...

It has fewer side effects, although IVIG, for most is pretty tolerable

The new Ig is called SCIG..sub cutaneous Ig.

The major advantage found in CLL is that the the dose, being weekly, is more even, you don't get the preaks and valleys, that the IVIG administration causes, and doing it at home.. savs the monthly hospital visits...

There are several brands.. here is one...

patient.hizentra.com/infusi...

youtu.be/nP4LGk-I5Ds(Not working as expected?)

[Yvbb in reply to Cllcanada]

Chris, I discussed the info you gave me earlier because I was interested in the possibility of subcutaneous gamma globulin at home. I was not given the choice. My team strongly pushed towards the traditional infusion. But...and this is nice, there is a home service here in the Netherlands. Medication and disposables are delivered at my home and a specialized nurse assists during the infusion at my home and monitors this. Next Tuesday I will get the second infusion in this series and Probably, as times goes by, I have the possibility to make the infusion more personalised (faster, other part of the day, end the infusion myself).

Yvonne

[luckyackerl in reply to Yvbb]

Not sure this is available in Uk. Thanks.

[Cllcanada Top Poster CURE Hero in reply to luckyackerl]

Absolutely is available in the UK... at least for primary immunodeficiency, and I would expect also for secondary , like CLL . Taking to your CLL doctor ...

piduk.org/whatarepids/treat...

[Cllcanada Top Poster CURE Hero in reply to Cllcanada]

Here is a Canadian study... lower cost, you aren't tied to an IV

In British Columbia, the cost to the health-care system was reduced by CA$5736 per patient over 3 years by using SCIG compared with previous IVIG therapy. An additional benefit for patients using SCIG is the possibility to do something else during the sub- cutaneous infusion.

onlinelibrary.wiley.com/doi...

[luckyackerl in reply to Cllcanada]

Thanks again! Will see haematologist armed with info now....

[AussieNeil Administrator]

Make sure you are well hydrated before you arrive for your infusion. It makes it easier/less painful for the medical staff to insert the cannula and the infusion should go better. I've posted about both my IVIG and subcutaneous IG experiences starting here:

healthunlocked.com/cllsuppo...

(The subcutaneous post is referenced at the end of the IVIG post).

I've been having subcutaneous IgG now for nearly a year and find it much better than IVIG. Sometimes I might have a few days of tenderness at the infusion sites, but I had a couple of incidences of phlebitis (inflamed veins and a few minor infusion reactions). It takes me about 2 hours for the subcutaneous infusions - about 30 minutes preparation and clean-up and between 60 and 100 minutes for the infusion. The infusion rate is determined by a spring pushing the syringe and the viscosity of the IgG. On very warm days the infusion goes very quickly.

As to the benefits, I've been able to travel to Europe from Australia (about 36 hours travel time), whereas before I couldn't mix in company for any length of time without picking up colds that took weeks or months to overcome. I still struggled at times fighting off infections, but importantly I never needed to go to hospital for IV antibiotics - the reason I was started on IVIG initially.

Neil

[Cllcanada Top Poster CURE Hero in reply to AussieNeil]

I will add...no coffee prior to the cannula...

Caffeine acts as a vascular restrictor--shrinking blood vessels...

My oncologt specialist nurse with over 30 years experience starting IVs told me this, she knows immediately if someone has had coffee before treatment... they are usually harder to poke...

💉💉💉

~chris

[luckyackerl in reply to AussieNeil]

Thanks, very informative. You manage it all in a seemingly most relaxed fashion.!

[luckyackerl]

Well who knew!! Many thanks...

[Ellieoak]

Yes do it. It has saved me many hospital visits. I do it my self every week. thou you can have the hospital do it once a month. It is actually up to your insurance. I have been on it 4 yrs. and have been pretty healthy because of it.

[luckyackerl]

Thank you, very encouraging...

[Ellieoak]

Yes with me adding IVHG I have felt wonderful ! Anna

[luckyackerl in reply to Ellieoak]

Very pleased for you!

[Ellieoak]

Make sure you go to the bathroom, then make sure that you are hydrated. Then make sure that lidocaine cream is in with your ivig supplies. Clean your hands and then the sites where you are going to infuse the put on a drop of the cream on the sites. Some people take a benedryl before to relieve sore spots. The spots are only sore a day or two afterwards.