IVIG

[wizzard166]

As some of you know who have been active in my recent posts, I started seeing an Immunologist a few weeks ago. She encouraged me to get the third shot, and began blood tests different from what our CLL Specialists give us.

I had the first Pneumonia vaccine shot sometime earlier this year, or maybe late last year, and her initial test shows very low level of antibodies from that shot. She wants me to get a second Pneumonia Vaccine, which she expects will not raise my antibody level very much. Then she said she has evidence she is building to classify me as eligible for monoclonal antibody infusions if I get mildly ill and test positive for Covid. She also said it is setting the stage to start IVIG if need be.

I told her that IVIG is something i want to stay away from unless I have no choice, because I know it means starting something you don't stop with infusions every three weeks. She said researchers are working on something right now to add Covid antibodies to the IVIG infusions, and said it would be a "GAME CHANGER".

I thought this was worth mentioning on our site, so others of you who are interested might want to see an immunologist like I have done.

Carl

[cllady01 Former Volunteer]

Interesting statement about a study adding Covid vaccine to IVIG. I'd assume that would take a trial and a few years to be perfected and approved. We would probably be shocked at some of the research that is going on in these maddening times.

Best wishes for your getting as much immunity as possible and I congratulate you on getting an Immunglogist on your team .

[wizzard166 in reply to cllady01]

Lady

I am not so sure it would take a number of years. Lets fact it the Covid vaccine we have all been getting has not yet even been approved by the FDA. We've been getting all these vaccines on an "Emergency Order". A good bit of the talk about Booster Shots for the Covid have mentioned the fact that they need to get the original Vaccines approved by the FDA first. I don't know if that is true. With all of this craziness with one new variant after another with Covid, it wouldnt shock me to see an "Emergency Order" to add Covid Antibodies to IVIG existing infusion treatments. We'll see, but my Immunologist literally said it would be a Game Changer.

Carl

[cllady01 Former Volunteer in reply to wizzard166]

I misread, Wizzard---in a bit of fog when I read and I put vaccine where the obvious Antibodies was called for. It is a no brainer that there will be antibodies in blood supplies for IVIG.

[SofiaDeo in reply to cllady01]

Adding Covid Antibodies, not vaccine.

[cllady01 Former Volunteer in reply to SofiaDeo]

Gotcha--I misread. And, of course there will be antibodies from blood of other people!

[AussieNeil Partner Administrator]

This post covers the order and timing of the prevnar and pnemovax pneumonia vaccinations: healthunlocked.com/cllsuppo...

IgG has a half life of 3 weeks, plus you continue to make your own while having infusions. In the UK and Australia, it's usual to have IVIG every 4 weeks when your IgG count falls below 4/400 and you've had serious infections, or better yet, weekly subcutaneous IgG self administered at home, which maintains far more even protective coverage.

In the US, the IgG threshold seems to vary by state. Insurance cover significantly affects what you can have and how often, because IgG is expensive - roughly the price of gold for just the IgG, before factoring in the costs of administering it. Weirdly, it's difficult to get insurance cover for subcutaneous IgG, despite the patient doing the infusions and the better overall long term protection, because the IgG diffuses slowly into the blood over the following week. IVIG gives you an immediate peak in blood serum level and you are most at risk of infection prior to your next infusion. Subcutaneous IgG peaks roughly 3 to 5 days after the infusion and it's a modest peak.

There should be growing amounts of COVID-19 specific IgG being used in infusions now, because the IgG is sourced from 1,000 plus donors, but it takes about 6 months from production to use. More will be better, so I'll be interested in specifics.

Neil

[Vizilo in reply to AussieNeil]

In Canada, at least, the lag time between blood donation and use may be closer to a year or more. The immunoglobulin I am now using was produced last October and probably donated weeks or months earlier. So, the lag time may be a year or more.

My oncologist believes that there won’t be significant anti-COVID antibodies in the immunoglobulin (from vaccinated and/or exposed to COVID donors) used in IVIG or SCIG until at least next Spring. But that’s only 6-9 months away. So, here’s hoping!!

[LeoPa]

How can they add covid antibodies to IVIG infusions, when with every new mutation these would have to be updated? Aren't they losing efficiency as the virus mutates? Isn't that why the older monoclonals are not used against the new strains anymore?

[Kbcjones]

I’m confused as to your concern of “starting something you can’t stop.” I had my first IVIG infusion two weeks ago and won’t have another until if and when I need it. My understanding is that periodic blood tests will keep an eye on my levels.Kathy

[HopeME in reply to Kbcjones]

Hi KBCJomes:

IVIG only last in the bloodstream for a short period time and why infusions are ongoing not a onetime event and why IVIG counts will be at their lowest level just before your next infusion. The infusion you were given will only provide very temporary protection. You should ask your doctor how long that protection will last.

Best

Mark

[wizzard166 in reply to Kbcjones]

I haven't had IVIG yet, but when I first looked into it I read something like what I said. I can't tell you where I read it, but the implication was that once it started a person continues IVIG long term every three weeks. Maybe what I read is wrong, and you certainly don't fit withing that description; so I don't know.

[Teegolf47]

I have to give you my anecdotal report on what happened to me. I received both of my Pfizer shots. I participated in the LLS study and on my first test I was negative on both 'having had' covid or having any Spike proteins from the vaccine. 6 weeks after my last shot I got my IVIG. the day before LLS sent me the Lab slip for the second test, so the day after my IVIG I took the LLS slip to the lab. And guess what? It now showed that I had had COVID (which I have not), and now I was showing Spike antibodies. Not a very high level, but they were there. Now, fast forward 5 more weeks and LLS sent me ANOTHER Lab slip, so I went out and got tested again, and now it showed that I had NEVER had COVID, and my antibodies had dropped down to .9, which is just above the positive threshold. I am guessing that if I got the test now 6 weeks later it would show negative antibodies. So it seems that the IVIG did already have some COVID antibodies in the, but they didn't last long. We are now seeing IVIG that was collected and processed 6 months ago, which was the height of the pandemic, so there would be an expectation that there would be COVID antibodies present. The question would be for us, will it give us CLL patients ANY real protection.

As a side note I used to get IVIG every 4 weeks at a 25g dose. Several years ago, Dr. Kipps decided (at my prodding) to move my IVIG to every 6 weeks, but he upped the dose to 40g, so as to extend the 1/2 life of the product.

Terry

[Psalm4610]

Terry, I had the same experience of testing positive for Covid antibodies( natural when no infection occurred and vaccine induced >2500) last May after getting monthly ivig since Feb 2020 for low IgG. Still treatment naive unless ivig counts. In my home state of Texas, USA, there is an ongoing research study by UTHSC Houston - free blood draws every 3 months for Roche spike protein qualitative and quantitative tests. ) “Texas Cares Project” if anyone in Texas is reading this or interested.

My oncologist had told me in February 2021 we’d eventually see Covid antibodies popping up in ivig but wouldn’t know the exact amounts. (Gammagard C) . I also remained positive when the recent August labs were drawn for having had a Covid infection (4.7 ) which I’ve still never had, and also my antibodies are >2500 for vaccination antibodies. ( I had Moderna in Jan-Feb) There must be substantial antibodies in my ivig!

I don’t even begin to understand what these numbers really mean now, or for the future. Meanwhile I still mask everywhere , haven’t eaten out in 18 months, don’t travel, etc. I’d like to think I have immunity from severe disease or being on a ventilator but who knows? My area has high Delta outbreaks right now so I’ll err on the side of caution.

I appreciate any insight and hope everyone stays well. Thank you ALL, for the wonderful CLL wisdom this board provides.

Donna