IVIG infusion

[Vocals]

When do patients get started on IVIG infusion please?

[AussieNeil Partner Administrator]

There are a couple of conditions that need to be met before IVIG or subcutaneous IgG infusions are prescribed:-

1) IgG below a specified threshold, the value of which depends where you live. It's typically 400 or 500 (4 or 5 with some labs).

2) Typically at least a couple of serious (usually bacterial) infections, perhaps requiring hospitalization.

IgG is provided through blood/plasma donors, so supply is constrained. Subcutaneous IgG is preferable to IVIG, where available. That's because there's so little risk of an infusion reaction, you can do them at home without assistance, plus, because it is done weekly, a more even IgG level is maintained.

Neil

[Vocals in reply to AussieNeil]

Thank you 🙏

[wmay13241 in reply to AussieNeil]

My wife's NIH CAR-T trial required an IVIG infusion when her IgG dropped below 400. There was no requirement for one or more serious infections.

[AussieNeil Partner Administrator in reply to wmay13241]

My reply was in respect to the more usual CLL situations. CAR-T is still experimental, so your answer is helpful to others undergoing this.

[HopeME in reply to AussieNeil]

I understand there is a worldwide shortage of IgG but the second criteria you list to qualify seems like a terrible threshold to be met. If the current criteria is an IgG somewhere between 400 to 500 and a potentially life threatening infection requiring hospitalization wouldn’t a better approach be reducing the IgG requirement to say between 300-400 and eliminating the life threatening infection requirement? As someone with an IgG of 530ish at last check 6-9 months ago I hate the thought of waiting around for a potentially life threatening infection. I can’t think of any other disease that requires a hospitalization before a prophylactic is made available.

Best

Mark

[AussieNeil Partner Administrator in reply to HopeME]

The difficulty with your suggestion is that some of us manage absolutely fine infection wise despite IgG counts way lower than the thresholds. Remember that your IgG count is the sum of all your various IgG antibodies being produced by plasma cells in response to all the infections and vaccinations you've had throughout your life. Hence the requirement to prove your need; you may or may not be producing IgG antibodies well matched to the pathogens in your environment. Or, from our recent knowledge from antibody testing after COVID-19 vaccinations, you might be producing lots of different needed antibodies, but in insufficient quantities to neutralise pathogens.

Neil

[HopeME in reply to AussieNeil]

Thanks Neil. I just wish it were more clear cut. I’m one of those folks with low IgG but no infections ever. I’m constantly looking over my shoulder wondering when the next shoe is going to drop and will I know what to do when an infection arrives? Something you said a long time ago still haunts me. You said you had a severe infection once and your wife had to talk you into going for help at the hospital. I thought if Neil was unable to detect a severe infection how am I going to respond appropriately?

Best,

Mark

[mrsjsmith in reply to HopeME]

Mark I think you will know when it ( hopefully never ) strikes. Pre second line treatment of Ibrutinib nearly four years ago I racked up a number of trips to A&E, operations and stays in hospital with eyes, ears, sinus and throat problems. Sadly I am grateful that it happened when hospitals were not overwhelmed.

Many years ago I heard Professor Daniel Catofsky speak at a CLL London meeting and he suggested we get a friendly GP to give us a ‘ just in case ‘ prescription for Azithromycin to keep in reserve. I did.

Colette

[HopeME in reply to mrsjsmith]

Hi Colette: Thanks for your response. I think I’ll ask my GP about a prescription at my annual physical in January.

Thanks

Mark

[Vizilo in reply to HopeME]

My GP was not keen on that suggestion. Very dangerous to self-medicate especially since you don’t know whether you have a simple cold, virus or bacterial infection. If you have a low IGG or low neutrophils, better to contact your physician or go to a clinic or hospital immediately

[Vizilo in reply to HopeME]

I had a similar experience as Neil did. In w&w for 5 years with no symptoms. IGG in the 4.75-5.25 range for several years. My cll specialist was concerned about the potential for a severe infection but not able to put me on IGG.

A sudden fever and intense shivering - typical reaction - “sleep it off”. My wife forced me to go to the local hospital. Luckily, a quick thinking internist, in the face of rapidly declining vitals, threw both antivirals and antibiotics at the infection and probably (along with my wife) saved my life in the process. Turned out to be bacteria in my blood stream (septicaemia) triggering sepsis. I got off “easily” - a week in the hospital and a month with a urinary catheter.

But because of this “severe” event, I qualified for monthly hospital IVIG in Ontario. Within a few months, my cll specialist had it converted to weekly at home SCIG self-infusions.

Sorry, for being long winded. The short answer as to how to respond appropriately: any temperature over 38C/101F should trigger a visit to the local Emergency/Urgent Care. Now I realize that it may be very expensive if you don’t have adequate insurance or live in a country with high hospital charges. Luckily, this is not an issue in Canada. I was charged 0 for my hospital stay, after-care, IVIG and SCIG (2 years worth). At the very least, you should immediately call your physician.

[HopeME in reply to Vizilo]

You weren’t long winded. I’n fact, your reply was quite concise and well written. You have described exactly the situation I fear. I’m going to have my wife read your response later today so she understands the infection risk I face. I know we have become complacent because I haven’t had an infection of any magnitude at any point in my life. Yet my IgG levels have have consistently fallen since I was diagnosed 4 years ago and the decline really accelerated after 6 rounds of chemo three years ago. I think my levels were around 530 this past spring.

Thanks for your input. It is greatly appreciated.

Mark

[Hidden in reply to Vizilo]

I am about to start the at home ivg treatment weekly. How is it and can you travel easily with the supplies? Happy to hear it was all covered as my at home chemo treatments here in Canada cost me $6500.

[AussieNeil Partner Administrator in reply to Hidden]

I've covered my experience in this post:

healthunlocked.com/cllsuppo...

It's reasonably easy to travel, with the biggest challenge being the need to keep the IgG under 25C/77F. I've travelled overseas twice, each time taking 3 month's supply.

Neil

[Vizilo in reply to Hidden]

I’ve been on home IVIG (“SCIG”) for over 2 years with no issues. No infections whatsoever in that time. It’s relatively easy and painless to administer and the learning curve is very short plus the instructions are very detailed and easy to follow. At least initially, it was comforting to know that a nurse was just an email/telephone call away. And, at least in Canada, there is no charge for the immunoglobulin or the supplies you need to administer it.

It takes about 90 minutes a week for me from start to finish. Since virtually all the equipment is single-use disposable (and very light!!), it’s very easy to travel.

As Neil points out, the immunoglobulin must be kept at under 25C . In hotter climates, make sure you have access to a refrigerator (2C-8C). At least in Ontario, you can get up to 3 months’ supply of immunoglobulin at a time, making longer trips practical. The drug manufacturer will supply as much in supplies as you want whenever you need it (next day delivery!!

Happy to respond, if you have further questions.

[Hidden in reply to Vizilo]

Thank you. I will reach out if I have any questions. I can’t tell you how great it is to be able to ask other cllers about their experience. God bless.

[Hidden in reply to Vizilo]

Is the Cuvitru itself delivered to you or just the needles etc.? I spoke to drug people yesterday and they said I need to pick it up from the blood bank at nearby hospital.

[Vizilo in reply to Hidden]

All the supplies are delivered to you. As for the Cuvitru, I phone the blood lab at my regional hospital when I’m down to a two week supply. They order it from Canadian Blood Services and I can pick it up the next day or the day after. First time you order, you pick up a four week supply; thereafter a 12 week supply.

I’ve been able to pick up without any issues every 12 weeks for the last 2 years even with the severest COVID restrictions.

[Hidden in reply to Vizilo]

Thank you, that seems to be the same system I will be following.

[Vizilo]

In Canada, my CLL specialist explained the benefits of IVIG to me while on w & w several years ago but unfortunately I did not meet the “threshold” then. Two years ago, I was hospitalized with a life-threatening blood poisoning (septicaemia) that started as a simple bacterial infection. This was enough to get me started on monthly hospital IVIG infusions. This was converted to weekly in-home SCIG self-infusions a few months later. So, in Canada at least Neil is right - you need to have a very serious hospitalization to qualify.

Interestingly, while there is a world-wide shortage of immunoglobulin for IVIG, there seems to be plenty of materials for SCIG. Go figure!!

[kaymack]

I had 4 cycles of FCR during 2013 and have been remission since. All my immunoglobulins had been low since treatment. My IgG was 2.0. My IgA and IgM are both 0.2.

During 2018, I developed Influenza A, which led to an RSV pneumonia, which left me with Bronchiectasis. I was given intravenous antibiotics in hospital, but no IVIg.

Upon the Bronchiectasis diagnosis, I was referred to a Respiratory Specialist and an Immunologist and they started me on IVIg monthly. The Respiratory Specialist told me if I'd been started on IVIg when I first came down with pneumonia, I wouldn't have developed the Bronchiectasis. Since covid-19 hit, I've been allowed to self administer it subcutaneously at home weekly. I prefer that. The Immunologist wants my trough level of IgG is be 8 or higher. I'm also on continuous Azithromycin 3x week, to reduce inflammation and the risk of infection in my lungs. I'm in NZ.