Immunoglobulin replacement therapy

[Michael199]

last week I started Immunoglobulin replacement therapy and it has really helped me.

I no longer need a nap just to be able to function, feel clear headed and able to go work out at the gym again.

Thought I’d share.

[Ellieoak]

Good! That is the best news ever. I’ve been on IVIG since 2013. And it has helped me too.

[Aerobobcat in reply to Ellieoak]

Yes me too, IVIG every 3 weeks for the last 13 years it’s been the most beneficial treatment.

Aerobobcat

[Michael199 in reply to Aerobobcat]

I’ll be going monthly. It took me about a week to feel something. How long did it take you guys?

[Aerobobcat in reply to Michael199]

Hi Michael, I had such a difficult time prior to receiving IVIG treatment.

I had been hospitalised 15 times with Pneumonia and sepsis on 4 occasions following my chemotherapy and radiotherapy treatments from 2010 up until approval for IVIG.

I have not had any serious chest infections since the start of this treatment, hence my belief, that for me it’s been most effective.

I wish you well and hope your treatment is successful.

Aerobobcat

[Otterblue2]

Great news! My hematologist recommended I start IVIG, too. I have been hovering in the range of 1 to 1.4 since starting my treatment, which I completed over 2 years ago. My study doctor says they will never be normal. I suffer from fatigue and wondered if this had anything to do with it.

[Michael199 in reply to Otterblue2]

I work evenings, usually sleep 3 am to 9 am. Than always needed a 2 to 3 hour nap in the daytime, not anymore. And I’m able to go to the gym and have plenty of energy to work out. Also I’m feeling a huge increase of focus.

Definitely recommend everyone with CLL to do it.

[ArtistBlacksmith]

It is great! I am so grateful to the plasma donors- it takes about 83 to keep each of us going each year!

[Abby-pup]

I completed V & O treatment in July 2022. I remained exhausted, with painful joints and paranoid to be in public. My sinuses were painful and constantly draining. I stopped bugging my PCP about this because they just won't do antibiotics for sinus infections. Move ahead to July 2024 and my Hematologist decided that my IgG, hovering around 275, was an issue. I started IviG in August 2024. It's amazing ! More energy, greatly reduced inflammation which has reduced joint pain. I can walk 4+ miles with no pain. I can clean, do hardworking and am sleeping much better. My mind is so much clearer and the sinuses are much better. I have 2 more rounds until my blood test. Oh, and my CBC numbers greatly improved.

All this to say, IviG has given me a new life. Worth it!

[Lila1 in reply to Abby-pup]

Am very happy to hear this for you. Thx for sharing success. I will qualify for IVIG my immuno says when I start (putting myself out there) getting sick. But IGG in high 300s alone isn’t enough. May I ask how did your CBC numbers improve that you mentioned ? Thank you again.

[Abby-pup in reply to Lila1]

my WBC jumped from 3.73.7K to 9.19.1K, Platelets 130K to 155K and Neutrophils 2.32 to 8.23. I have 2 more infusions scheduled before more extensive testing.

[Lila1 in reply to Abby-pup]

Those are happy improvements. May I ask one more question please? Does your hema attribute the CBC improvements to recovery/time from V&O and/or to the IVIG?

[Abby-pup in reply to Lila1]

My CBC numbers before the three infusions were respectable, but hovered on the low end. The new numbers were after the 3 infusions. I have 2 more infusions scheduled before I see the Hema. I can't imagine what else could have caused the improvements. And my own anecdotal observations are not attributed to anything else. So, well see what he says.

[Lila1 in reply to Abby-pup]

Thanks again Abby-pup

[FiArt12X]

many people respond well to this

[chif888]

Hi Michael,

Many thanks for sharing.

You could have retained the 'secret' & charge all the CLLers for the hot tip.

[Veggiesaredelish]

Me too, but it took a couple infusions to get here. Thankful!

[Lila1]

my IGg in the 300s but I never get sick so doc won’t prescribe. I never get sick bc I don’t go to the gym anymore bc I dislike wearing mask when I work out. Do you wear a mask at the gym post-IVIG or is IVIG protective enough to go without a mask at the gym?

[NMgal]

Wow, great timing on this! Glad you shared. I'm in remission with low Immunoglobulin. Last year I had numerous infections. My oncologist is not concerned but Pulmonologist is due to congestion ongoing for 5 months. She is talking about doing IVIG therapy. Great to see so many benefited👍 Lorna

[TruthJunkie]

I am pleased to hear that others are getting such miraculous energy from IVIG therapy. I have been getting IVIG once every 4 months or so, whenever my IgG level drops under 500. It helps me from developing respiratory infections, I realize, but extra energy? Not in my case. I think that CLL patients should remain realistic in their expectations of this treatment. All best to those who do get such results!