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Want to connect with others with Splenic B cell Marginal Zone Lymphoma
Blood Cancers & Disorders | Last Active: 1 day ago | Replies (346)Comment receiving replies
Hi Monica,
I didn’t want to do Rituxan again, because I believe it has caused me chronic problems. My immunity never recovered and I now must get immunoglobulin infusions every four weeks. That only helps with IgG. I have low IgM and no IgA. I believe the lack of IgA has resulted in chronic digestive problems…lactose and fructose intolerance especially.
So, I opted to try Brukinsa. It’s too early yet to tell if it will work for me. I like the ease of taking a pill at home.
Replies to "Hi Monica, I didn’t want to do Rituxan again, because I believe it has caused me..."
Hi @andilynn - one comment - I heard that some ppl give themselves subcutaneous IgG shots every week or two. They mention 2 benefits - they can do it at home, and it evens out the IgG over the month. This is what I will try to get when they say I can get IgG. It's too bad that IgA replacement therapies don't exist yet (I have low IgA). I did see that there is research going on in this area, so fingers crossed. Finally, I'm on Brukinsa 8 months so far, no issues yet.
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I’m sorry you are dealing with this. I’m learning about the immunoglobulin “world” which has never been on my bucket list. I’m not sure if 2 years of Rituximab infusions maintenance would be good for me, mainly because of the scary reactions I’ve had, but also because of information like you are sharing. Please let me know how you do with the Brukinsa? My doc has mentioned it.
Sending energy for a good outcome!