Stopping IV Ig

Going through treatment
, , ,
1

I have Chronic lymphocytic leukaemia (CLL) and have been in monthly ivig since 2019. My consultant is considering stopping it if’ ‘…the winter goes ok’…I will ask morecindepth questions later but ask if anyone else has had ivig stopped and why

3 Likes
2

Hello @NBarnard

Welcome to the forum, and thank you for reaching out.

I’m also a Chronic lymphocytic leukaemia (CLL) patient, however I only got my diagnosis in April 2025, and I have not started any form of treatment. I am on active monitoring with blood tests every six months.

Whilst I cannot answer your question, I am confident there a number of people with not dissimilar circumstance who may be able to respond more directly to you.

I had a quick search and could not find any other posts that ask your question, or are of a similar nature, but do feel free to search the forum should you desire.

I would say that the best thing to do is put that question to your medical experts who will be able to address it and answer any further questions who may have.

If you prefer you can speak confidentially with our support services team for information and support on 0808 2080 888

Take good care of yourself

Do let us know how you get on

Kind regards

Mike.

3 Likes
3

Hello @NBarnard

I hope you are doing okay.
Thank you for posting about your IV IgG treatment, sorry that you have some questions and uncertainties about this potentially being stopped.
Some of the reasons that IV IgG may be stopped are:

  • patient’s IgG level is increased compared to when they started,
  • patient has fewer infections/days in hospital/courses of antibiotics,
  • patient gets side effects or kidney issues
  • patient starts other Chronic lymphocytic leukaemia (CLL) treatment

I think you should ask more in-depth questions to your consultant when you next get chance, just so you feel reassured that the decision is right for you if the treatment is stopped. You could ask about your blood counts and Ig (Immunoglobulins/antibodies) counts to see if they have improved since 2019, and how often you have this test.

As Mike has suggested, you’d be welcome to call the support line if you think it would be helpful to discuss this with one of the nurses.
Please keep us posted.
Best wishes, Heidi.

5 Likes
4

Thanks for your reply….yes I shall ask in depth questions on my next meeting with the consultant, particularly around Ig measuring both now and ongoing. Cheers.

5 Likes