Rituximab + IVIG

pibee

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I have a question for you, @Gingergrrl , how did the doctor exclude possibility of chronic bacterial infections, in your case? I mean, since all tests are not very reliable, like bartonella, even by Galaxy.
And do you know if this is a major dealbreaker for rituximab? I am confused because I know they give it to PANS children, who have it from lyme/bartonella... but yet I hear you cant have it if you have suspected chr bacterial infections. Hmmm... it is much more affordable than IVIG, so I wish i could do it :/
 
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Gingergrrl

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I have a question for you, @Gingergrrl , how did the doctor exclude possibility of chronic bacterial infections, in your case? I mean, since all tests are not very reliable, like bartonella, even by Galaxy.
I guess you can't ever exclude anything 100% but in my case, my symptoms did not match with Lyme or tick-borne diseases, I'd never had a tick bite that I know of and do not live in a part of country with many ticks, and I'd never been scratched by a cat (and am deathly allergic to cats). I was tested for Lyme three separate times (2010, 2012, and 2014) just to be as sure as possible and was negative on every single band with not even one band equivocal. I was also negative for Bartonella and Babesia. I also had three triggers of my illness that were indisputable: a neurotoxic reaction to Levaquin, followed by severe Mono from EBV, followed by severe toxic mold exposure.

And do you know if this is a major dealbreaker for rituximab? I am confused because I know they give it to PANS children, who have it from lyme/bartonella... but yet I hear you cant have it if you have suspected chr bacterial infections. Hmmm... it is much more affordable than IVIG, so I wish i could do it :/
I actually do not know anything about PANS and can't really comment but my general understanding is that Rituximab is unsafe if you have active infections like Lyme or Bartonella. But others probably know more about this aspect than I do. I was tested for Hepatitis, TB, and the JC virus prior to starting Rituximab.
 
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@kms1990 I am still in the middle of doing IVIG and Rituximab together, and can answer any questions you have re: my experience, but I do not have any literature re: the affects of using the two together.
Thanks! How far along are you with Ritux? Have you noticed any adverse affects since beginning?

Based on what I have read about b cells ect it seems positives impact would start showing up a few months in, maybe faster if you also have IVIG eating up "bad" antibodies previously produced by the now depleted b cells.
 

Butydoc

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Thanks! How far along are you with Ritux? Have you noticed any adverse affects since beginning?

Based on what I have read about b cells ect it seems positives impact would start showing up a few months in, maybe faster if you also have IVIG eating up "bad" antibodies previously produced by the now depleted b cells.
The average interval from start of Retuximab and a clinical response was approximately 6mo. This information was available from the phase 2 trial from Mella/Fluge. There were a few who responded by week 10-12. The maximum level of improvement was seen between 6-12 months.
 

Gingergrrl

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Thanks! How far along are you with Ritux? Have you noticed any adverse affects since beginning?
I had the initial two Ritux infusions (7/18 and 8/1) and my first maintenance infusion is in two days. I honestly have not had any adverse affects from it whatsoever and it is easier to tolerate than IVIG in my experience. I had a mild allergic reaction during the second infusion which completely reversed with IV Benadryl.

Based on what I have read about b cells ect it seems positives impact would start showing up a few months in, maybe faster if you also have IVIG eating up "bad" antibodies previously produced by the now depleted b cells.
This is my understanding as well.

The average interval from start of Retuximab and a clinical response was approximately 6mo. This information was available from the phase 2 trial from Mella/Fluge. There were a few who responded by week 10-12. The maximum level of improvement was seen between 6-12 months.
I have already responded to Rituximab and am (approximately) at the 3-month mark so I am very excited to see how I will be doing at the six month mark (end of Jan/early Feb 2018). How are you doing @Butydoc with your Rituximab and where are you in the process?