low Immunoglobulins

[Davidcara]

Hello Everyone, My CLL is actually under control with normal labs, except low immunoglobulins. IGA and IGM basically nothing, IGG 401. Taken off Zanubrutinib when I got Covid in July 2022, been off since then.

Continually tired, some days exhausted. With lower extremity pain, feels like inflammation. Had some short doses of prednisone for sinus issues, which helped, actually felt normal.

Being worked up for polyneuropathy, nerve conduction study positive for sensory neuropathy.

Thanks for you thoughts.

[Newdawn Administrator]

Hi David, your situation resonates with me but I’d rather not go into personal health detail on an open post and I note you tend not to restrict your posts to this community.

It’s my experience that haematologists tend to use infection frequency and intensity as their main indicator in offering IVIG. I’m not sure they accept/respond to fatigue, inflammation and other health issues as a consequence of acquired hypogammaglobulinaemia.

I think you need the advice of an immunologist to strengthen your case for regular IVIG (if you’re not already being considered for it).

Best wishes with your tests,

Newdawn

[Davidcara in reply to Newdawn]

Thanks Newdawn. Yes the immunologist suggested IVIG. She actually feels I could have had CVID that led to CLL. My oncologist believes CLL led to hypogammaglobulinaemia. So who knows? Additionally, oncologist feels not worth IVIG and potential issues that could come with that. I am getting ready to revisit with oncologist and immunology about all of this, after neurology complete the neuropathy work up

[Newdawn Administrator in reply to Davidcara]

Interesting 🤔

I had severely depleted immunoglobulins very early into my W&W period and seemingly well before the CLL had ‘established’. It normally develops and progresses along with the CLL but my baseline was low.

I’m experiencing some of the issues you describe even in remission. The fatigue/inflammation is becoming brutal. Please report back, it will be interesting to learn what they discover.

Regards,

Newdawn

[larrymarion]

David, i've been down this road. My IgG levels were/are even lower than yours. My other IgX levels are way below the low end of normal. Due to serious viral/infections over time i've had IVIG. Most of the time that stuff worked great, but i had a bad reaction to the ninth infusion. So no more IVIG for me.

There's an alternative that may be worth it for you--subcutaneous gamma globulin. Basically a self injected syringe dose. Definitely ask your docs about whether this makes sense.

Unfortunately, as others have noted, highly unlikely you can get anything like this for just fatigue.

In the past my hemocs recommended caffeine and other non drug solutions to the fatigue problem. Also, I find a chocolate treat each afternoon helps everything in life. In addition, i use a lot of nasal sprays to deal with allergies, and the modest levels of steroids may be helping me deal with fatigue, too.

[Davidcara in reply to larrymarion]

Thanks for the reply. Yes, SQ could be a good option. Oncology is not big on any of these.

[rwsehorn]

Greetings David- I have IVIG infusions (gammaguard) scheduled every 30 days by my onc, but the insurance only pays/allows if I fall below 800 which seems to take about 60 dyas for me. Sometimes I'll stay above that threshold after getting it every 30 and sometimes not. Over the last year I probably have had 9 infusions. I don't know if it is psychological but it does make me feel better in terms of energy and aches. I'm not sure it really prevents one from catching COVID/colds etc but it would definitely help with the progression of any bugs and colds you may come in contact with. I had a bout last fall and think it would have been way worse had I not been keeping my IVIG #'s up

[rwsehorn]

and by the way my my IgA and IgM or basically 0 most of the time and noting much can be done about that I'm told