Most effective way to administer IVIG

lucy84 @lucy84, Sound like your not alone; list of illness that need IVIG; What conditions does IVIG treat?
- Kawasaki Disease (KD) - Guillain-Barre syndrome - Chronic inflammatory demyelinating polyneuropathy (CIPD) - Lupus - Myositis, Polymyositis, Dermatomyositis - Neurological diseases like Myasthenia Gravis or Multiple Sclerosis - People who receive bone marrow transplants may also use IVIg to prevent infections -
I don't have IVIG - I have your list of symptoms; chronic fatigue and chronic respiratory infections, live on antibiotics all winter (antibiotics Sept. Oct. Nov 2022 and 1/2 Jan. / All feb 2023 ) antibiotic 6 months at a time

Hi @lucy84, I'd like to add my welcome. I'm tagging a few members like @grandpabob @megmangin @ntichenor @nhlbob who have had IVIG treatments related to blood cancers and managing symptoms. I'm hoping they can help answer your questions.

Lucy, you mention that you're concerned that you're not being treated correctly. Are you concerned that the IVIG treatments are not being administered properly or are you thinking you need to pursue a different treatment?

I do question how the IVIG treatments are being administered. When I go in for a 3 or 4 month check with my oncologist, my Ig #’s are always way below normal. Then, I take 4 infusions, two per week for two weeks. I have heard that other people take one treatment each month. The nurses always question me about the the way I am getting them and have commented that most people get one per month. I would like to hear from people who get the IVIG treatments, if they are getting blood work results back within normal range, and how they are being administered. Thanks.

Hello @lucy84

The regiment I was on after Car T was, once the levels fell below minimum, I would receive one treatment once a month for four consecutive months. (Regardless how the levels changed) My blood would be checked on a monthly basis and the treatment would start again once the levels dropped below the tolerance level. This went on for about 2 years after cancer treatment. My blood is still well below minimum levels however the treatments have been discontinued as I do not get infections. Treatments could start again if infections occur.

I had a reaction to the infusions and had to take take pre-meds before the infusions. Do you have a reaction?

Thanks for your response. No, I have not ever had a reaction to an IVIG infusion.

Hi @lucy84

I have MCL stage 2A which was diagnosed last April. It's taken an indolent course so far and I have been on watch & wait with it. However, I also was diagnosed with CIDP and my neurologist started me on a four month trial of IVIG last October. I received the loading dose of five consecutive days followed by twice weekly infusions. I just had a new EMG which didn't show I responded to the treatment. My bloodwork was also affected by the IVIG. Everyone's treatment is different; some get IVIG 1x every 3 weeks, some 1x monthly, some 1x weekly and, some, like myself, receive it 2x/week. Hope that helps.

Thanks for the info. Very interesting. Does your oncologist perscribe the treatments, or do you see an immunologist?

I have Smoldering Myeloma with high IgA and IgG which keeps on dropping. The last test result showed it was at 235. My heme/onc said we could start IVIG infusions if I got 3 upper respiratory infections in a 3 month time period or I could start on quarterly infusions to try and get the number up. I chose the latter and will get my first one next Monday.