Early CKD Support
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Rituximab

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

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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.

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Go for it. It worked great for my husband

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

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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.

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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!

Dx

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

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Thank you aadd4444!

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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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