Privigen 45g/4weeks !!!

[doc1947g]

I was diagnosed in November 7th 2019 following a bone marrow biopsy.

Was on Wait & Wacht until November26th 2023 when they started GAMMA IV with 45 g of IgG (Privigen every 4 weeks).

Anybody is or was on that treatment.

[Newdawn Administrator]

I received Privigen monthly for a year and found it to be excellent with no adverse side effects. Best wishes with your treatment.

Newdawn

[doc1947g in reply to Newdawn]

Thanks. I presume that you are not on it anymore.

I am almost 77 y.o. and was told that it was going to be a lifetime treatment .

Next infusion on 2024/04/14.

The last one, I started a terrible headache so they had to use the lowest rate. I ended to be at the clinic for 5 hours.

[Newdawn Administrator in reply to doc1947g]

I had monthly IVIG whilst on treatment but then Covid struck and it wasn’t considered safe to go into the day-unit. My immunoglobulins are still sub-optimal but as my IgG is over 4, I no longer meet the criteria for infusions on the NHS.

I recall my first infusion being quite long as they introduced it slowly but apart from a bit of tiredness, I was fortunate enough not to suffer any side effects.

Newdawn

[mrsjsmith in reply to doc1947g]

I have been on Privagen since 2018. Hopefully you will get used to it. I always get them to start at a low rate and ramp up because the one time they started at a faster rate I got breathless. Just be prepared with plenty of snacks, drinks and reading material. I also alternate arms for the canella and have become adept at reading one handed. It will hopefully prevent you from getting any infections 🤞

Colette

[RobertCLL]

I have also been on Privigen 30g for the last 10 years (approx). Only takes an hour to get the infusion in.

[mrsjsmith]

Just a thought doc. 45g sounds a large amount ? It is usually weight based and I am weighed every month. Perhaps question the amount next time because obviously that will affect the time taken.

Colette

[doc1947g in reply to mrsjsmith]

I am 77 kg.

[mrsjsmith in reply to doc1947g]

Then 45g sounds too much. I am 69kg and I have a 20g bottle and a small one not sure how much in that but probably 5g. So worth questioning at next visit.

Colette

[doc1947g in reply to mrsjsmith]

2024/02/18 GAMMA IV

2024/02/19 Tests the day after Privigen 45g/4weeks.

My IgG =21g/L (7.0-16.0)

My IgA =0.62g/L (0.70-4.00)

My IgM =14.65g/L (0.40-2.30)

🐒🐵🙈🙉🙊

[mrsjsmith in reply to doc1947g]

Doc I have never seen figures like this so I am totally confused maybe AussieNeil can comment. As I understand it only helps with IgG and is weight based.

[AussieNeil Administrator in reply to mrsjsmith]

Colette, doc1947g 's results don't make sense to me either.Doc1947g, with your reported IgG =21g, that IgG result is above the upper IgG of 16g/L, so on that basis, you don't need supplementation. That is unless your IgG was measured soon after your infusion (when it is still higher than I would expect) , however, it's standard practice to check your IgG blood serum level before an infusion.

The amount of infused IgG is primarily determined by weight, then adjusted as necessary to boost your IgG to around 8 to 10g/L prior to your next infusion. I'm a similar weight to you and only need around 35 grams every 4 weeks.

IgG infusions at considerably higher doses that replacement therapy doses are used to control auto-immune conditions, but I couldn't see mention of you having IgG infusions for that purpose. Are there any typos in the quantities you've shared?

Neil

[doc1947g in reply to AussieNeil]

NO

[doc1947g in reply to doc1947g]

Électrophorèse des Protéines Sériques.

Protéines 87(H) (64 - 82g/L)

Albumine 39.4 (33.0 - 51.5g/L)

Alpha-1-globuline 3.0(H) (1.4 - 2.6g/L)

Alpha-2-globuline 9.5 (5.6 - 10.8g/L)

Beta-1-globuline 5.5 (4.5 - 7.1g/L)

Beta-2-globuline 3.1 (1.8 - 4.9g/L)

Gammaglobuline 26.5(H) (5.9 - 14.4g/L)

Albumine/Globuline 0.83(L) (1.10 - 1.80g/g)

Pic monoclonal 1 10.0 (9/l)

IgG 21(H) (7.0-16.0g/L )

IgA 0.62(L) (0.70-4.00g/L )

IgM 14.65(H) (0.40-2.30g/L )

🐵🐒🙉🙈🙊

[AussieNeil Administrator in reply to doc1947g]

Thank you for confirming that your high IgG result was from when the blood test was taken "the day after Privigen 45g/4weeks".

I've attached a plot of my IgG counts from when I started IVIG infusions. The peaks are calculated from assuming I have 5.5 litres of blood. I calculated my IgG half life by adjusting the half life decay until it most closely matched my measured IgG prior to my IVIG infusions. The smaller changes at the end of the graph what I theoretically anticipated from shifting to weekly subcutaneous IgG. In practice, I've had a slightly higher IgG and even less variation. That's because with subcutaneous IgG, the IgG diffuses gradually into your blood from the bolus under your abdominal skin over several days.

Neil

IVIG infusions cause an IgG spike, after which the IgG drops with a ~3 week half life.

[wmay13241]

My wife (76) has been receiving an Gamunex-C IVIG IgG infusion every two months for 7 years with no side effects. The dosage is based on her weight at the time of infusion. Prior to infusion, she gets two tylenol tablets and IV benedryl.