Hi team - my cll Dr called me to tell me that my IGG levels are too low and i need monthly transfusion / iv at the hospital
Anyone had experience with this
I have. just been very sick from covid pnemonia so it explains that my low levels meant i could not fight of the infection
thnks
Bruce
Hi Bruce:
A fair amount of CLL patients receive these infusions. Unfortunately, IgG infusions do not last long in the blood so it is an ongoing monthly process to maintain IgG at healthy levels to help you fight infections. I’m not sure about availability in Australia but it is possible to self inject the IgG in your stomach on a weekly basis. Not only are IgG levels more constant throughout the month with this method but you also avoid going to the infusion center monthly. The self injection process allows the IgG to remain more stable over the month than a monthly infusion which injects IgG all at once at the beginning of each thirty day period. You should check with your doctor and insurance company to see if this method of IgG delivery is available to you. Also, be thankful that your doctor has prescribed IgG as there is a worldwide shortage so not everyone who needs it can get the treatment. What is your current IgG level? In order to get IgG you need low IgG (usually below 4.0 or 400 depending on the scale used) and a severe infection which you recently had.
Best
Mark
Good summary Mark,
Bruce,
The Hizentra IgG provided in Australia is available in two concentrations for IV and subcutaneous use respectively.
Neil
Hi Bruce,
Here's my experience: healthunlocked.com/cllsuppo...
Neil
Hi Neil - do you do the sub cot injections - if so what is the cost to that?
I was going to ask you to ask your doctor about subcutaneous IgG. I shifted to subcutaneous delivery about a year after starting on monthly (4 weekly) IVIG. I allowed me to travel overseas, as I could take my IgG with me. I was part of a trial into shifting CLL patients in my state to subcutaneous IgG (SCIG). No-one in my trial wanted to shift back to IVIG. Here's my post on SCIG. healthunlocked.com/cllsuppo...
Below is my plot showing the theoretical blood serum IgG variation with IVIG and SCIG. I believe from seeing the results on IgG tests taken on different days of the week, that the blood serum level variation from SCIG is even lower. That would be explained by the slow release of the IgG into your blood stream over the week, ,from the infusion bolus you create below your abdomen skin.
Addendum: SCIG should be free to you. You'll probably need to pick up quantities of the infusion kit supplies from a public hospital chemo day care infusion centre and IgG supplies from the Transfusion group - probably in the same hospital.
Neil
My recent IgG was 2.4, down a bit from 3 months back. In that time I had a respiratory virus and a gastric bug that have both hung around for a while, but no severe symptoms. My haematologist advised against IVIG without explanation. So I'm curious.
The value of providing expensive IgG infusions was based on the observed reduction in serious bacterial infections requiring hospital admission for IV antibiotics. Viral infections we generally clear for ourselves.
Neil
Yes that makes sense. I don't feel I'm missing out!
thanks Neil - so are the scig covered by medicarein australia/
Yes, Medicare covers the cost of IVIG or SCIG, or private health insurance if you have it for IVIG. IgG availability is limited because it's supplied by blood and plasma donors. Each batch of IgG is made from the donations of at least 1,000 blood donors, so that recipients get protection from all the vaccinations and illnesses experienced by all those donors. The Red Cross also specifically collects IgG from vaccinated donors, to make IgG rich with the resulting antibodies to help people very ill with the disease to recover.
Australia imports about half of its requirements. So please encourage anyone asking if they can help you, to consider becoming a blood donor. Cancer patients are the largest benefactors from blood donations.
Neil
yes just got confirmation that Private health is going to cover - I start on tuesday with my first round - thanks for the info Neil -
thanks for the info Neil and Mark - My count last test is 2.2 which I can see is really low - my Dr said 6 mths but I am seeing this could be an ongoing thing
I’ve had IGg infusions every 28 days since February 2013 with 2 short breaks during which I picked up infections. It’s been determined that I should continue to have these for life now. I’ve had no side effects and it’s nice to leave the hospital feeling positive!
Bruce,
I started out with CVID (Common Variable ImmunoDeficiency) and started on replacement therapy. This was weekly by subcutaneous means. You take the vials of 20% immunoglobulin and draw up however much you are prescribed into (in my case) 50ml syringe(s). You insert 4 very fine, 10mm needles on sticky backs into fat bits of the abdomen, connect up the primed line to the syringe and insert it into a syringe-driver which could be spring-powered or battery operated. The device pumps in the IgG while you get on with something more interesting. In my case I have 80ml of IgG and the process takes about 1hr 30mins and you do it at home (once you've been trained and passed as competent). If you have a hairy abdo, it is worth shaving it otherwise removing the sticky pads afterwards is more uncomfortable than putting the needles in!
Because I have had bowel cancer surgery, my abdo is off limits for a while so I have had two sessions of IVIG.
This takes place in hospital. The IV version of the IgG is at 10% concentration and for me, this means 600ml of fluid. 12% of my entire blood volume. You get the normal hospital obs checks and a cannula is inserted into your hand or arm, the primed line is connected up and the bottles hung up on a drip-stand with a pump fitted. They start off with 27ml/hr, then increase it progressively to 435ml/hr. In my case, the process takes about 4 hours. During that time you can wander about as long as you unplug the pump from the mains so it runs on batteries and you remember to plug it back in again when you return to your seat but you are basically stuck there for the 4 hours. Every hour they'll come round and check your BP, Sats and temperature but, once it is done, you're done for a month. The Royal Surrey's Medical Day Unit are lovely people and I couldn't fault them at all but it basically wrote yesterday off.
I have experienced both methods and I have to say, on the balance of convenience, even though the hospital is only 10 minutes' drive away, that the Sub-Q method is so much more convenient. You are free to choose your time and place for doing it, you can get on with more useful, interesting and less boring things while you are infusing. You balance 4 hours once a month against 1.5 hours once a week. From a pharmacological point of view, weekly doses means a more constant level of IgG while monthly ones leads to much greater peaks and troughs in the IgG level. It is a personal choice but I can't wait to get back to the subcutaneous method in a month's time.
Thank you for taking the time to describe both procedures SERVrider! Appreciate this~ Hope all is well!
Cookie~
I've had two IgG infusions with no problems, no side effects. In fact, I felt great after both. I'm 10 years watch and wait with no other symptoms except for the low IgG.
Kathy
I stared getting IVIG monthly after a life threatening infection three years. Luckily, I converted right before COVID took hold to self-infusing the same immunoglobulin weekly at home (SCIG). It is easy, painless, keeps IGG levels constant throughout the week, fast and convenient (any time and less than 90 minutes/week), infection-free. For some reason, SCIG immunoglobulin is much more available world-wide than IVIG immunoglobulin. I pick mine up every 3 months with only a 24 hour notice.
After 10+ years of monthly IVIG my hematologist decreased it to every 8 weeks. This has been keeping my IgG levels acceptable.
I have no experience but wish you well & feel better asap!!
Cookie~
I was on monthly IVIG for 24 months because I developed pneumonia 4 times in 2 years. My CLL specialist discontinued it although my IGG levels are low because I am no longer getting infections (O and V are keeping me healthy).
I had car-t in April of 2021 & have had monthly igg infusions since with no probs.
I don't see problems with either method having used them both; they both work as long as you follow normal aseptic procedures. The choice really is on the balance of convenience for the patient. With IV, someone else does it and is responsible, with SC the patient does it all and is responsible for what he/she does.
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