Early CKD Support
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Hello,I've been reading through the posts a long time here but this is my first post.

I have CKD 3b ...gfr 38% but recently dropped to 33. It's an autoimmune thing for me...my body just attacking itself. I also have autoimmune pancreatitis.

I have been waiting for about a year now for funding &licensing for a rituximab infusion which I've now been accepted for. Has anybody else ever had one?Apparently it kills all your B cells,then your body reproduces them...so Dr is hoping my body will only grow back good ones,not the ones attacking my body. She is hoping this might save me a transplant in the future. I'm 38 years old.

9 Replies

what i believe THEY are trying to use u as a guinea pig for their reseaserches


Lol. .I have been a guinea pig since I was 19 as there are only 100 reported cases of my diagnosis worldwide. So it is a bit tricky for them to know how to treat me. My consultant gastroenterologist actually went to Japan for me back in 2000 based on 15 patients,&that's when they came up with the diagnostic criteria. So I am always greatful for what they try for me.


Go for it. It worked great for my husband


Thank you dozie! Did he need any time off work because of being immune compromised?


My husband is retired, so that wasn't an issue. But no, he has not felt compromised in any way. And his protein leakage is down to 1.22 from almost 9 grms a year ago. "Partial remission" they call it. Still hoping for full remission but he feels great and we're leaving tomorrow for 10 days in the Galapagos Islands.


Oh wow...Galapagos Islands sound amazing! ! Have an awesome time! Thanks for your reply&I'm glad rituximab helped!!I am hoping to get my infusions within the next month. I haven't heard of any other people having this treatment other than for Rheumatoid arthritis &cancer so it's reassuring to hear from someone who's been treated with it!

Again, have an amazing holiday!



Dear One, I wish you a quick recovery and a healthy life.


Thank you aadd4444!


I've finally got my date through for rituximab. ..first infusion will be 20th Feb&2nd one 6th March.Feels like a long time that I've been waiting. ..over a year now


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