immunoglobulin boost

[jillybird13]

Having completed my O and V treatment 12 months ago my immunoglobulins still haven’t recovered. This has led to me having repeatedly caught chest infections despite having an antibiotic everyday .

Eventually I have been authorised Curvitru infusions, I had my first instruction last week. I’m to do the infusion at home . Hopefully this will lead to less antibiotics with their associated problems

Faced with the kit of syringes, and paraphernalia I was reminded of science lessons back in the mists of time . I was always the one given the basket of tubing to unravel , or the drawer of tools to sort . But eventually it was all neatly arranged and tuition started .,

I’m sure once I’ve done it a few times it will become easy , but do I have to say ‘ sharp scratch’ each time I put one of the four needles into my tummy ? 😂

Here’s hoping for a less ‘coughy’ 2025.

[lankisterguy Volunteer]

Hi jillybird13,

For most CLL patients any of our current treatments do not improve our IgG, IgA or IgM values.

The only treatments for frequent infections are IVIG or CUVITRU® | SubQ Ig Infusion (assuming Neutrophils / Neut# / ANC is in an acceptable range)

If you want to read 11 other postings on SubQ see: healthunlocked.com/cllsuppo...

We hope it is successful in reducing your coughs

Len

[larrymarion]

Jillybird13, welcome to the newest CLL club. I started the same process three months ago and it is going well. First time i had to insert the needles i had a panic attack. Finger muscles froze and assorted other symptoms. My wife had to help...

After a few more weeks of "practice," it has become a routine. In fact, the most pain i get is when i rip off the bandages that lock in the needles after finishing the infusions. The supplier for the kit also sends "uni solve adhesive remover wipes." Excellent way to avoid the pain from ripping off bandages.

Other tips:

i found it easier to insert the needles while sitting on a counter stool.

It's easier to pinch my stomach to present a target for the needle.

I shave my belly a few hours before the weekly subcue infusions, to minimize bandage adhesive pain.

Yes, the entire process and paraphernalia involved is quite daunting in the beginning. It became routine for me after the fourth time i've done it on my own.

Good luck. If you have any other questions that aren't answered by your docs, pharmacist, et.al., send me a note. I have a CLL friend who has been doing this for a year and i've relied on him for advice, too!

Larry

[jillybird13 in reply to larrymarion]

Thank you Larry , nice to hear from someone who has lived the ‘dream’ . I’m used to injecting as I had Filgrastim most of the year long treatment. But 4 at the same time ? Shut my eyes and think of England as the saying goes .