Ivig therapy

[Downriver555]

Just came from the drs office. My iGg levels dropped again to

IGM 21, IGA 27, IGG 213

Dr wants to start replacement therapy:(. He also started talking about me having MONOCLONAL B-cell lymphocytisos. Is that a precursor to cll which I was originally diagnosed with? My white blood cell count has remained consistently within normal ranges

Once you start ivig therapy is it for life? Any thoughts would be helpful in understanding mcl vs. cll

Thanks

[AussieNeil Partner Administrator]

This pinned post and reply provide fairly thorough coverage of Monoclonal B-cell lymphocytosis (MBL), a precursor to CLL: healthunlocked.com/cllsuppo...

Whether you need IgG infusions (can be IVIG or subcutaneous IgG), and for how long, depends on the individual case, i.e. whether you are able to make sufficient immunoglobulins.

Neil

[Panz]

Good day to you! Have you not had Ig infusions before? I have Ig infusions every 4 week as I am not able to make many immunoglobins on my own. I take Gammagard, however, there is a real shortage and I now keep my fingers crossed that they are able to get it for me. I started out just taking infusions when I dropped below a certain level so it was just maybe 3-4 times a year and I did that for about 2 years. However, they told me I needed them on a regular schedule to get me where it was a safer place to be and so yes this will be something I will do the rest of my life....it is no big deal as it keeps me healthy. Sorry I wasn’t much help but do know that I am interested in your situation....hang in there and you just be positive with what ever comes your way. 🙏 ☘️

[Mrsminton]

I had IVIG in January 2017 because of a wicked sinus infection that would not go away. The IVIG helped clear that infection. A few months later, I had to start chemo/immunotherapy treatment (BR) for swollen lymph nodes that were impacting my sleep, and restricting blood flow. I finished 6 monthly treatments in September 2017 with excellent results.

I’ve been getting IVIG every 4 weeks to keep my IgG levels In the normal range. When they are low, I get a variety of little infections - UTI, mouth sores for example, and am susceptible to Sinus infections which turn into significant infections for me. I have stretched out the timeline to 6 or 8 weeks, but that frequency doesn’t work for me so I stick to every 4 weeks. My WBC and lymphocyte counts are in the normal range. Best of luck.

[thb4747]

Hi, I’ve had IVIG every 4 weeks since Feb 2013 after I’d had a multitude of ear and sinus infections. My very first IVIG was ordered by an ENT specialist in consultation with my then CLL specialist. The treatment has been paused twice but each time I got sick so it’s now been approved for life. I’m 71. Apart from the 2 issues mentioned, I haven’t had so much as a cold since 2013 (I also have an annual flu injection and have had anti-pneumonia vaccine).

[Downriver555]

Thanks . What did your iGg levels get down to? Mine are 215 and I am quite fatigued and don’t feel like my self. Did your insurance approve you for life?

[thb4747]

My lowest was 4.1 (410 in your language I think). 5.0 triggers IVIG here in NZ where treatment like this is free. I’ve also had very low neutrophils - just to add to the mix. Good luck with getting on to regular IVIG.

[MsLockYourPosts Passed Volunteer]

My IgG was @250 when first tested in 2003 and I was sick all of the time. I was started on monthly IVIG immediately. My doctor tested my highs and lows to determine my pattern, as far as the count sliding down between counts and I was put on monthly infusions for years. For me IVIG has been a Godsend. I have been healthier since starting than I have ever been before, going back to childhood.

I recently graduated to every other month and so far that is working out well, but I will be on IVIG for life. I have come to think of my infusions as a time out period with no interruptions, and I always have up to date labs, as they are done before every infusion. Doctor's appointments are also easy, as the doctors are on the same floor as the infusion room, so when it's my turn I just wheel my pole across the hallway.

Your IgA and IgM can't be boosted - mine have been in the basement since diagnosis - but IVIG infusions seem to make up for that.