IVIg?

[Islandjewel23]

Hi fellow travelers, I have questions about IVIg. I never had IgG levels checked at diagnosis, in 2014. I’ve had frequent infections over the years, and then my CLL “bloomed” in late ‘22 and I started Acalabrutinib. I’ve been on it a year and a half.

Recently, when discussing my immunity, (especially to Covid) my onc (a community oncologist, so not necessarily a CLL specialist) asked me if “we’d checked my IgG levels?”! I’ve just read that those levels should be checked early on. She checked my levels and my Ig was under 300! I received one dose IV and the level was rechecked in a month. My level then was just above 400, and she said I didn’t need it anymore. Everything I’ve read says the cutoff is at 500, so I’m frustrated. I also read that by a month, all benefits if the IgG are gone. I(Incidentally I did not receive premeds, and it was not administered with a “ramp up.” Idid receive it a e time a month after that with a “ramp up” and lack of premed orders was discussed. I tolerated my first dose well, then had sudden agitation and a headache during my second dose which resolved by stopping the infusion for a bit then restarting at a slower rate. All of this background to s I'm not quite trusting of how the Ig levels are being managed. At what IgG levels are y’all being treated, and lastly, what is your understanding of how much immunity we might get? I have had a “shut down” life since Covid and it’s affecting my quality of life at this point. I want to go to a restaurant! Thanks so much. Please forgive the typos! When editing this my curser keeps going to the last letter written! Argh.

[Spark_Plug]

"I have had a “shut down” life since Covid".

I can relate, I feel that somehow I stopped living but forgot to laydown.

But hey, it get's better if you look for what you've gained in perspective, rather than focus on what you've lost.

I'm not saying I don't occasionally feel annoyance at forgetting that No, I can't treat my newer family out to dinner ( I miss the companionship not the food). I recently went to a good bye party for some close friends and stayed South of the outdoor group with the wind at my back. I did so want to pat the host's incredible greyhound.

Yet, my close friends respect me more for being disciplined enough to take care of myself, and be the best friend I can be towards them. I've gained more patience with my wife and grown son. My family relations are much improved.

You will find your own compensations, as my parting friend advised, " learn to have an attitude of gratitude". 🙂

[Islandjewel23 in reply to Spark_Plug]

That’s lovely. I appreciate the pep talk. Many more things gained than lost on this journey. I do keep hoping IViG will be the thing that frees me up a bit. I’ve read so many personal stories and lots of differing info, even from the medical field. There was a great virtual offering by the CLL Society during which an NP suggested we learn if we have any antibodies to Covid (especially in light of the fact that BTKI’s decrease ones ability to get good immunity from vaccines.) I didn’t know there was a way to check that. I was part of an LLS study that checked my response after each of the first 2 Covid vaccines. My response rate was not great, but not nothing. I was told at the time that the numbers weren’t necessarily indicative of immunity, or at least that they hadn’t figured out what they meant yet. I’m so appreciative of the great info here (And AussieNeil for your deep knowledge! Thanks for answering my questions earlier.) It seems so many are either on prophylactic AB’s or monthly IgG. I think if I had more info about my own immunity (if possible) or even an additional treatment for it, I’d feel safer out there. I also wonder: if each dose “lasts”? approx 3 weeks, then am I safest to drop some rigidity just after IG? I’ve been impressed about the great variety of people who are coping with Covid: from being rigidly careful vs those who feel they’ll take some risks just to have a full life. I guess we all just approach things differently! I’ll check into SQ IgG also. It would surely be more cost effective? Thanks again for all you wonderful helpers out there! Julie

[AussieNeil Partner Administrator]

The IgG threshold for IVIG or subcutaneous IgG replacement therapy varies by jurisdiction and in the USA also by insurance cover it seems. You also need to have had recent serious bacterial infections to qualify, as it's possible to have very, very low IgG counts and yet not struggle with regular, serious infections. (Some of us have immune systems where we seemingly make just the right antibody mix for what we are at most of risk of encountering.) In some countries, including Australia, the threshold is 400. Premeds are also not given in Australia unless there's found to be a need for them. (It's possible to react to a Premed and why give it if not needed?) Switching to an alternative product also helps if infusion reactions often occur. Infusions in Australia are ramped up to reduce the risk of infusion reactions. If the supplied IgG is comprised of different batch lots, the infusion ramp-up is repeated when there's a change in batch lot number, though they do try to give you a common batch lot (not easy to do if different vial sizes are used) and minimise the number of batch lot changes.

Subcutaneous IgG supplementation can be done at home, with next to no risk of an infusion reaction, plus it is typically done weekly. This more frequent boosting, plus the slow diffusion from the bolus site into your blood stream, results in a much more stable level of IgG in your blood stream over time.

There's also the option of staying on prophylactic antibiotics. See: healthunlocked.com/cllsuppo... IgG has a half life of around 3 weeks, so after 6 weeks, you'll still have a quarter of the infused IgG present.

Neil

[W00dfin]

I have been receiving IVIG for almost 20 years, initially during the cold/flu season. I was getting various infectious diseases so it was given monthly year round. My hematologist decreased the frequency to every 8 weeks about two years ago. My IgG level was 483 last time. My premeds are benzodiazepine and Tylenol although I have never had any side effects thankfully. The nurse increases the iv rate every 30 minutes until it gets to 150. I receive 30 grams and the whole process takes 4-5 hours.

I have had COVID once after my daughter brought it home. I was symptomatic (sick) for about a week. I credited the IVIG for my fairly mild case.

Hope this helps!

[W00dfin in reply to W00dfin]

PS

Major CORRECTION! My premed is NOT benzodiazepine! (If only..) It is Benadryl. Apologies for the brain fog.

[hhk50]

I have nothing to add, but this is a timely post for me. I saw the nurse practitioner on my last visit and noted that my sinus issues are at the nuisance level. When I questioned whether it was time for an antibiotic to "knock down" the infection she checked my last IgG (420) and offered IVIG as a possibility to review with the CLL doc. No firm answer yet.

[Davidcara in reply to hhk50]

Wondering if it was decided for IVIG for you. I am in America. My IGG has bounced around from 412 to 470 over the last 4 years. On and off of BTKi treatment. No CLL treatment for last two years. Now with IGG 416, oncologist is recommending IVIG. Was surprised because, two years ago when immunologist recommended IVIG, oncologist said no. So not sure why now? I was a bit surprised so did not think of questions that I now have. I am older, 5 year old granddaughter leaving with me now, multiple viruses in the community, wonder if any of this influences his recommendations. Told him I would think about it. Leaning strongly to accepting IVIG. Not feeling great with fatigue, chronic sinus and neuropathy over the last year or so.

[hhk50 in reply to Davidcara]

Hi David - I did not broach the topic of IVIG with my CLL guy during this last visit. Instead, I set up an appointment with an ENT to see what he has to say. I'm just trying to free myself of the various infusions (IVIG) since I already taking immunotherapy every three week. Haven't seen the ENT yet.

[Davidcara in reply to hhk50]

Thanks for the reply. It was my ENT who referred me to the Immunologist. When I told ENT IVIG was recommended from Immunologist he said good. Then Oncologist said no, that was two years ago. Now Oncologist recommends IVIG. Will see what happens.

[kimiD]

I'm watching this post as well. My doctor just wrote the orders for SCig and hope to start that weekly at home. My last level was 486 in April and it has been on a downward trend. Earlier this year I had RSV and pneumonia so was sick for over 6 weeks.

[larrymarion]

A few supplemental comments to AussieNeil's excellent post, based on my current IVGG program and the history behind it. I'm in the u.s and have had to deal with Medicare and supplement insurance challenges to IVGG for 10 years.

My IgG levels dropped below 400 several times, and typically bounce around the 420 level. I typically get colds/flu/bronchitis/pneumonia, to the point that i've been treated with really nasty antibiotics (Look up side effects of Levaquin and take a drink to calm down--i've had to use it twice without damage to my Achilles tendon but i'm petrified of a third go round).

Other chronic infections include sinus issues and joint pain due to inflammation my screwed up immune system can't handle (Note i had 11 cycles of chemo before BTKs and BCL2 became available).

As Neil noted, taking antibiotics on a prophylactic basis may be an alternative, but most docs are quite resistant to prescribing them since their effectiveness is waning. After a lot of begging and promises my hemocs agreed that i should have an Rx of azithromycin (a.k.a. a z-pack) available to use at the first sign of illness. I also take 800 mg/day of acyclovir, an antiviral to help protect me from COVID, etc. It's helped me several times this year when my wife was ill but i avoided it.

Another addendum to Neil's post--Subcu GG is definitely the way to go. I'll go that route after another successful hospital infusion--i had a bad reaction to an IVGG infusion 10 years ago and they're being very cautious before i start SC. I have a good friend with CLL who has been on SC for almost a year and reports it really does prevent infections. I was heavily premedicated then and now due to my history of issues with it.

[AussieNeil Partner Administrator in reply to larrymarion]

A timely report by New Scientist states that Antibiotic resistance forecast to kill 39 million people by 2050

- The number of people worldwide directly killed by antibiotic resistance will rise to 1.9 million a year by 2050, according to the most comprehensive study so far

newscientist.com/article/24... (Not paywalled, but you might need free registration)

The number of global deaths directly attributable to antibiotic-resistant bacterial infections is forecast to rise from a record 1.27 million a year in 2019 to 1.91 million a year by 2050. In total, antibiotic resistance is expected to kill 39 million people between now and 2050 – but more than a third of that toll could be averted if we take action.

:

In a scenario in which new antibiotics are developed against the most problematic bacteria, 11 million deaths would be averted between now and mid-century. In a “better care” scenario where more people also have access to good healthcare, even more deaths are avoided.

Yes Fluoroquinolones rightly have an FDA black label warning, but sometimes they can be life saving when other antibiotics don't work. Killed off bacteria causing cellulitis that survived IV vancomycin in my case.

Neil

[Davidcara in reply to larrymarion]

Interesting, ayclovir for covid. I’ll need to research that a bit. Interesting concept since it is a antiviral. Additionally, lots of shingles cases after COVID.

[larrymarion in reply to Davidcara]

My understanding of the use of acyclovir as a prophylactic is to help prevent or reduce the severity of viral infections in general, not just COVID (I suspect the COVID vax was more relevant than the acyclovir). In my case, i had shingles even though i had Shingrix vaccine and my docs were concerned about my apparent vulnerability before i started subcutaneous gamma globulin. I still got covid from my wife earlier this year, even while taking SCGG and acyclovir, but my symptoms were extremely mild. So i attribute my "easy" COVID experience this time around to all the prophylactics.

Now that my IgG levels are in the normal range, it is a good question whether i need to continue the acyclovir. Telehealth conference with my docs in 30 days, after more testing, to get their guidance.

[AussieNeil Partner Administrator in reply to larrymarion]

My IgG had been well into the normal range from weekly subcutaneous infusions and I still developed an extremely painful case of shingles in a sciatic nerve. Hence I had pain from my lower back all the way down to my foot and struggled to walk. I'm taking Pregabalin to manage the postherpetic neuralgia nearly 3 years on. I recommend you stay on the acyclovir.

Neil

[larrymarion in reply to AussieNeil]

Neil, thanks for those details and advice. Hopefully you're not experiencing nightmares as a side effect of Pregabalin. I took it during my shingles attack and i'm still having them!

[AussieNeil Partner Administrator in reply to larrymarion]

Sorry to hear that you added nightmares to your shingles woes. That's one side effect I didn't have! I was still very relieved to get my Pregabalin dose down considerably to what I needed during the worst of the shingles, but I really would prefer to not need it to function without pain.

Neil

[Classicaljazz in reply to larrymarion]

Pre-CLL I had two doses of the shingles vaccine 7 years apart (breakthrough rash/itching same spot once or twice a year on my back where the original shingles occured). Then post CLL diagnosis and a few months after my second Shringrix vaccine I experienced shingles without a rash that on one side of the back of my head with headaches that lasted for months until starting daily Valtrex-- a week after stopping the Valtrex, it came back. This was about five years ago. After completing V&O three years ago my doctor suggested stopping the daily Valtrex and I have always said, no-- that a CLL specialist had told me once that I would probably be better staying on it always. Luckily, I have no side effects from 500mg twice a day-- much better than the awfulness and pain of shingles with or without the visible rash.

[larrymarion in reply to Classicaljazz]

Thanks for sharing your experience. Since i've had no side effects from acyclovir, and it doesn't cost much, i'm inclined to keep using it. As you say, the symptoms of shingles are so onerous that prophylactic use would seem to trump any concerns about overuse of an antiviral.