IVIG dose

[ava1967ir]

Hi,, please guide me about the starting dose of IVIG injection and its maintenance dose?

[lankisterguy Volunteer]

Hi ava1967ir,

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I've not heard of an altered dose amount for IVIG in either the initial or the usual 4-6 week follow up doses.

Reduced doses are used for Obinutuzumab / Gazyva (infusions) and Venetoclax (pills) but not IVIG to my knowledge.

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Len

[ava1967ir in reply to lankisterguy]

hi, thanks for reply ❤️

[AussieNeil Partner Administrator in reply to ava1967ir]

The initial dose is determined by your weight, but can be adjusted back if you can achieve an acceptable IgG level due to your own body's contribution. That's been my experience where I live, but I suspect the answer depends on where you live and how the expensive IgG is funded.

Neil

[thb4747]

Just concurring with Neil. I’ve been having IVIG infusions every 28 days for 10 years now. My initial dose was 33mg but because I’ve responded quite well (and lost a bit of weight!) I’ve been getting 24mg for the past 3 years or so. If you multiply your weight by 0.4 you should get a pretty good idea of what your dose should be.

[Aerobobcat]

Hi ava1967ir, I too have been having IVIG infusions every 21 days for 9 years now the present dose being 20mg. I had been hospitalised 15 times with Pneumonia with sepsis on 4 occasions, since I have been having this treatment I have not had any major infections.

My real concern is that my treatment may be stopped due to the high demand and cost, this has been mentioned a few times.

My advice to you would be to embrace this treatment if it is offered to you it has been my saviour.

My regard’s Aerobobcat

[HopeME in reply to Aerobobcat]

Why would your treatment be stopped given your history? Nineteen hospitalizations for sepsis/pneumonia is astounding. I hope you are able to continue your IVIG treatment.

[Aerobobcat in reply to HopeME]

Hi HopeME, thanks for your response and question, in a nutshell my Haematologist says your IgG levels are relatively good so we can now stop the infusions. Needless to say I have continued to argue that my current lack of infections is because of my IgG infusions. It really is all down to cost and availability.

My regards

[LeoPa]

How did the question come up? What did your doctor say?

[SERVrider]

If it is any help, I normally have 16g / 80ml of 20% immunoglobulin by SCIG a week. When I had to have it IV for 2 months, they used 600ml of 10% solution, so roughly 60g. Over 4 weeks of SCIG I take 64g. My body weight hovers around 88kg. The dose of immunoglobulin solution is about 12% of my total blood volume! It started off at 28ml/hr and was slowly increased every half-hour to 300ml/hr. All told it takes about 4 hours. Take a good book or a newspaper with you because it is a very boring time otherwise. The only uncomfortable bit is inserting the cannula, after that you are completely unaware of the infusion process. If you're in the 'States, you'll have to convert everything from SI into American units, sorry.

[wmay13241]

My wife has permanent bone marrow damage caused by a 2016 CAR-T infusion so her body does not produce immunoglobulins. Hence her oncologist prescribed Gamunex-G. The dosage is based on your body weight. At 142 lbs she gets 35 mg Gaumnex-C IVIG every 8 weeks. She has not has any side effects and not had any infections. Before each IVIG infusion she is given IV Benadryl and two tylenol tablets. The infusion rate starts slow then the RN increases it over time. There is more information and a good video at gamunex-c.com/en/patient

[AussieNeil Partner Administrator in reply to wmay13241]

CAR-T, when it works very well, keeps eliminating new B lymphocytes, including Follicular Lymphoma and CLL cells. So I doubt it is permanent bone marrow damage from her treatment, just that the harvested T cells can't differentiate healthy B cells from cancerous ones. It's great that your wife is doing so well!

Neil

[wmay13241 in reply to AussieNeil]

Thanks AussieNeil. Her January 12, 2023 immunoglobulin labs (taken just before an IVIG infusion) were IgA <5, IgG 212, and IgM <5. She had a fully humanized National Institutes of Health CAR-T clinical trial in March 2016 and her immunoglobulins have never returned to normal values.

[AussieNeil Partner Administrator in reply to wmay13241]

Thanks for sharing your wife's immunoglobulin levels. They show that her CAR-T is continuing to eliminate all B cells, so none get to mature into immunoglobulin producing plasma cells.

[noeagaman]

I have been getting IVIG for 5 years now and originally received it every 5 weeks and then eventually every 7 to 8 weeks. A few months ago my doctor decided to bring me back down to every 6 weeks and increase the dosage due to my getting pneumonia several times, bronchitis and then a fungal infection in one lung. I am not sure what the dosage is, just that it was increased.

Chris

[mrsjsmith in reply to noeagaman]

Chris,

As far as my treatment goes it is weight related. Just before Christmas I had an immunology appointment and they wrote to my consultant suggesting I go back to monthly infusions, because I had been moved to 8 weeks during shortages. Hopefully I will feel the benefit.

Hope your various health problems have improved.

Colette

[noeagaman in reply to mrsjsmith]

I guess that I am lucky, Colette. Shortages have never been mentioned where I get my care. Maybe that is because I go to a military hospital.

I have another upper respiratory infection brewing. Hopefully it does not get as bad as the one that I had last year. We'll see.

I hope that you are doing well physically too.

Chris

[mrsjsmith in reply to noeagaman]

Hi Chris,

We do like to keep the doctors busy, I have just had another echocardiogram so 🤞.

Hopefully your infection will go away and not bother you.

Colette

[noeagaman in reply to mrsjsmith]

I will keep my fingers crossed for you Colette. Yes we sure do keep our doctors busy. I am tired of constantly having to go see them for one thing or another. I had an endoscopy scheduled for tomorrow but had to reschedule it due to this infection. I am constantly using up my vacation time from work going to all of these appointments. My wife and I were planning a trip to Hawaii in April, but now that has to be put on the back burner due to my vaction time shortage. Oh well, Hawaii will always be there when I retire in a year or two...

Take care Colette.

Chris