CUVITRU SubQ injection side effects?

[sunsetssr]

If you are on CUVITRU SubQ injection, I appreciate it if you share any side effects involved. I'm looking for real-life side effects and not the list from the company site or brochures given to the patient. Thanks for your time.

[AussieNeil Partner Administrator]

I have been using a similar product to "CUVITRU SubQ, Immune Globulin Subcutaneous (Human), 20% Solution" for nearly 5 years and find it way more preferable to the alternative of IVIG or occasional hospital admissions for IV antibiotics for up to a week. Other than some tenderness for up to a day or so afterwards, my main reaction is tiredness afterwards, so I shifted to evening infusions. When my platelet count was very low, I was more likely to get some underskin bleeding and bruising.

Neil

[sunsetssr in reply to AussieNeil]

Thanks Neil.Your reply is encouraging.I think I go ahead to start the process. Did your insurance covered it and if there is a co-pay, is it reasonable?I know different insurance have different coverage level, and some don't authorized SubQ at all. It would be good to learn about other insurance coverage and the patient's financial experience. Thanks for your time, and Happy Holidays.

[AussieNeil Partner Administrator in reply to sunsetssr]

You'll need to check what cover your insurance provides for IVIG and subcutaneous IgG respectively. Some health insurance providers in the US give less cover for subcutaneous IgG.The only difference between the subcutaneous and IV versions of CUVITRU is that the subcutaneous version is more concentrated. You tend to get more side effects from IV delivery from standard infusion reactions; our bodies don't like extra blood volume happening. You also save your veins with subcutaneous delivery. Most importantly, you maintain a far more consistent level of antibodies/immunoglobulins in your blood to prevent infections with subcutaneous delivery. The accompanying plot shows my actual IgG counts (red crosses) while I was having IVIG. Those plotted when I switched to subcutaneous IgG were estimated. They turned out to be higher in practice; I'm averaging over 9.

IVIG and subcutaneous IgG are provided at no cost in Australia; it's covered in our Medicare tax levy. I personally consider my infusions as bonus interest on nearly 4 decades of being a blood donor, for which you aren't paid in Australia. Actually I went for a walk yesterday to pick up my next 4 weeks of subcutaneous IgG supply. The cost is printed on the boxes containing the vials - about US$2,000 worth. IgG infusions have mostly kept me out of hospital these past few years, for which I'm very thankful to the thousands of blood donors.

I've documented my experiences in these posts:

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

Neil

Subcutaneous IgG provides far more even levels of IgG in our blood.

[Vizilo]

While on w & w, I developed a bacterial infection which turned into life threatening sepsis requiring hospitalization about 3 years ago. This was “enough” to allow me to be prescribed monthly in-hospital IVIG. Luckily, right before COVID reared it’s ugly head, I was able to convert to weekly SCIG (brand name - Cuvitru)

I have been infusing at home for almost three years. Easy to administer, no side-effects, takes me about 90 minutes from start to finish. All supplies other than the immunoglobulin pump are single-use disposable and FedExed by drug distributor whenever I need it. I pick up the immunoglobulin every 12 weeks from the local hospital (with 48 hour notice)

Most important, I have had not so much as a cold in the last three years (but do continue masking in all public indoor spaces).

[sunsetssr in reply to Vizilo]

Thanks for the information. I didn't know it would take 90 minutes for the administeration of SubQ, oh well I guess I have to get use to it. Great information again. I appreciated the detail provided.

[Vizilo in reply to sunsetssr]

The infusion takes about an hour. Setting up, putting the equipment together, loading the immunoglobulin and clean up after takes the other half hour or so🥳

[sunsetssr in reply to Vizilo]

Good to know and plan for a good timing to administer this life saving medication. Thanks for your your help

[SERVrider]

I started on SCIG using Cuvitru in 2018 with a dose of 100ml (20g) a week. After a a training session in the Royal Surrey County Hospital and a home visit by the Clinical Nurse Practitioner to supervise, I was "passed" as competent. I learned that my CNP is based at Frimley Park Hospital and has about 65 patients spread over Surrey, Hampshire, E & W Sussex. I am supposed to do an annual supervised check administration but this has been suspended through Covid.

From Feb 2018, the supply of Cuvitru, made in the factory in Lessen/Lessines, Belgium, (As Belgium has 3 official languages, most towns have Flemish & French names, sometimes similar such as Luik/Liege, Brussel/Bruxelles, but others dissimilar Rijsel/Lille [just over the border, in France], Bergen/Mons) continued although Shire Pharmaceuticals was taken over by Takeda of Japan. Supply issues caused a problem and instead of getting 12 weeks' supply of Cuvitru at a time, they restricted it to 4 weeks' supply but delivered monthly. In Sept 2019 I was switched to Hizentra by CSL Behring. More recently my dose has been lowered to 80ml (16g) weekly and my level of IgG is now in the "normal" range. I noticed no changes whatever in the switch from Cuvitru to Hizentra. Once I started on Acalabrutinib in June 2020, the injection sites showed a bit of bruising but nothing too spectacular. This year, in anticipation of colon surgery, I had two months of IVIG instead of the normal SCIG; 600ml of 10% solution or 12% of my total blood volume and 5 hours of boredom in the Medical Day Unit hooked up to a drip-stand with a dosing pump and a cannula. They do standard obs every hour checking temp/ BP/ Sats even though I'm not ill! Thorough but a bore. I was glad to get back to the DIY SCIG. Like Aussie Neil, I noticed tiredness after a SC administration but I have got used to it and barely notice it now. With 4 injection sites, each one takes 20ml so my abdo looks a bit like a farrowing sow for a day or so but it disperses fairly rapidly. As Neil says, weekly SCIG gives a much steadier IgG concentration than monthly IVIG which gives far higher peaks and lower troughs. My rate of infections fell markedly and has remained really low since starting SCIG. It takes a bit of getting used to inserting the needles but it isn't painful, just uncomfortable. I suppose needle-phobic people couldn't cope with that. The needles are only 10x0.5mm so nothing like a full-bore cannula shoved in one's arm. Mind you, gentlemen may find removing the sticky needle pads more painful than inserting them! I think you'll find SCIG a practical and convenient method of bringing your IgG levels up. Good luck.

[sunsetssr in reply to SERVrider]

WOW,I need to absorb all these details; thanks for your time.I'm a health care worker and always enjoyed injecting my patients(just kidding) and now it is my turn....! Great information. Appreciated the detail.

[SeymourB]

sunsetssr -

I was on Cuvitru for a couple of years, and stopped in the spring of 2020 due to the Pandemic.

No side effects at all from Cuvitru for me. But I don't think most people have much trouble besides local irritation. I was on weekly 49.5mL (~10g Cuvitru 20%), and used a single needle in my belly, alternating sides.

I may go back on once my CLL treatment starts.

I think masking by me and my school teacher wife, plus all the hand washing and sanitation has helped my infections be less serious. Except I got COVID (plus a staph infection) when my wife stopped masking a single time in the cafeteria on Teacher Appreciation Day. She got COVID, and brought it home to our daughter and me.

=seymour=

[sunsetssr in reply to SeymourB]

Thanks for the information. You are very right about prevntive measures regardless of getting Cuvitru or other kind of IVIG is an important factors. I'm mostly self isolated and started getting EVUSHELD every 6 month which is a great help to protect me from Covid.I attended a conference for 3 days before Covid and got sick for 3 months but fortunately survived. This was a good warning.Thanks for letting me know that the routine administeration of Cuvitru can be stopped for a while if needed.