← Return to IgG levels up, no improvement in symptoms

Discussion

IgG levels up, no improvement in symptoms

Autoimmune Diseases | Last Active: 6 days ago | Replies (11)

Comment receiving replies
@bayarea123

one more idea.. you're doing great in asking for help... The other doctor who helped me was a very senior researcher at a medical school. She had to face the decision of whether to put her son on IVIG.. it was agonizing for her to think about the side effects. She did and it changed everything for her son. She told me to re-frame it as "liquid gold". I needed a lot of feedback from others and you might need that too. Then, the second step is to try to figure out if you're with the right doctor. What is the right time frame. Before IVIG, we did a trial of daily antibiotics for 18 months- total failure.. and another doctor said, you should have made a new choice after 6 months of failure. It's very hard to tell in the moment, but I feel like 12 months feels a bit long. I have been given advice of more like 3 months. Would they be willing to try to increase in a step wise fashion.. try 5 more grams for example? Sometimes if large moves are hard, then, reducing the increments can help with decision making and also shorter trial periods. These might be 2 frameworks that help with decision making.

Jump to this post


Replies to "one more idea.. you're doing great in asking for help... The other doctor who helped me..."

I want to thank you more than I can say for taking the time to write and most of what is mentioned yes has been discussed or done.
I am speechless as the information, questions, you answered is more than I could have hoped for and much more so after six or more years of getting along and thanks to my husband who doesn’t give up, a diagnosis, confirmation then start of IVIG with initially great results but now back to square one I somehow found this forum and most fortunately for me, and luckily found you. Please believe I am not kidding!
I will read the article mentioned and hope many others find the information (if fitting) you provided.