My IgG level has been in the 350mg/DL range for several years. I was getting IgG infusions about a year ago. These infusions were about every 3 weeks over a year period. Doing such got my IgG blood level up to the 900 - 1000mg/DL range. But then my infusions were abruptly stopped and have not restarted. I was told that since I was only getting a cold around once per year, I was apparently, per my oncologist, no longer qualified to get such infusions. Note that I have never gotten sick more than once per year since my original diagnosis in 2013. I would however think that getting infusions every 3 months in my specific case, for example would be prudent at this time due to the Noro virus increasing here in the USA. I am 73 years old. Is there a better medical argument that I can present to my oncologist to hopefully get some limited periodic IgG infusions?
Criteria for getting IgG Infusions: My IgG level... - CLL Support
Criteria for getting IgG Infusions
Hi Mark,
I'm not sure whether your mention of getting colds applies to before you started the IgG infusions or during having them - the latter not being an appropriate argument, as that's what we would hope IgG supplementing would achieve. IgG is roughly the same cost per gram as gold, with the supply limited by blood donations. Worryingly, the USA, Australia and the UK all rely on imports to supply the local demand. That's in part why it's challenging gaining and maintaining approval for them, for which the patient needs to have not only an IgG count under 500 or 400 (varies with jurisdiction), but also some serious infections. Unfortunately, there's also a need for better studies to prove their effectiveness, including evidence for preferring them to the much cheaper option of prophylactic antibiotics. Here are a couple of related past posts from my co-admin colleague CLLerinOz about this concerning situation.
healthunlocked.com/cllsuppo...
healthunlocked.com/cllsuppo...
While the half life of IgG is around 3 weeks, it's usual to have IVIG infusions no more than 4 weeks apart. Perhaps one avenue you might be able to explore, is asking for antibody titres for COVID and other high risk infections, after you've been vaccinated for them. If you can show that you aren't making antibodies and you are at significant risk of exposure due to work or other commitments, perhaps your oncologist might be prepared to approve them while you are most at risk. You might also get on better by seeing an immunologist, who would be more aware of the impact of secondary hypogammaglobulinemia than an oncologist, who perhaps isn't as familiar with CLL related immunosuppression.
Neil
Strategies to support our innate immunity and spare our T Cells?
Does this even exist? - other than clean living, infection protection strategies, microbiome maintenance, general fitness etc etc.
I was riding my mountain bike yesterday across a local Moor. In rain and fog and mud... Cows, sheep and horses were roaming free, as no doubt was their excrement. Was I at risk?
... why did I do that anyway, well, it started out dry, forecast was wrong. 🤷♂️ Normal UK weather stuff...
Jig
AussieNeil is spot on. Cost is about AUD$125/g and a Ig infusion is 40g. It takes about 83 plasma donors to support this dose monthly for 1 person. I started 3 months ago with IGg 396 and total IG 463. However I'd had infection after infection all year there was hardly a time that I was not on antibiotics- a challenge for a fit young 51 year old farmer. The IVIG has stopped the infections but globulins are still low so working out a plan with Haemo to gradually extend time between infusions from 4 to 6 to 8 weeks gradually monitoring how we go. I think in your case follow AussieNeils advice and if you don't develop antibodies or if you start getting infections then negotiate with your Dr for a course of IVIG
The reason for not giving an ig infusion was that my IgM was too high then they don’t give it either. I also got it before.
I had to jump through the infection after infection hoops to get mine in the UK . After I had been on antibiotics continuously for 3 months I was referred to Immunology and I have a weekly infusion. I have been told it will be stopped in May for the summer months and re started in October. The reason being less germs in summer and a chronic shortage of the drug .
I was told the same, also UK NHS.
On enquiry I ascertained I'd need hospitalisation level of infection, ie sepsis 2x!!! before my low Igs are replaced.
In my case post FCR effect.
Scarcity and cost were the reasons.
I've noe had 3 infections requiring antibiotics, just not hospitalisation. Cos Abs started promptly. Scary stuff.
I know all about infection recognition now, and infection protection.
Jig
Lowering IgG as sign of progression?
IVIG Infusions Suspended - Covid
IgG testing
IVIG Infusions
