Rituxan: what happens after years of remission?

Wondering about people's thoughts and guesses about why after a Rituxan remission of years a person would come out of remission? Does it really take that many years for the b cells (or what??) to grow back and remember their unhealthy ways? I've seen a number of board members post recently about remissions of years from Rituxan ending - many have re-treated successfully which is great but it just seems so weird that the disease is back after years of being gone. I have to assume that the effect of the Rituxan just wears off? Also so strange how sometimes it wears off in less than a year, other times in several years...

I know that we don't know, but I think a lot of times we make very good guesses about the mechanisms behind this stuff.
Erica

Erica - I think that Rituxan wears off 6 to 12 months after using it in all cases. The people that have longer remissions just stop producing antibodies for some reason. It's a remission, after all. If ITP starts up again, it's just because the body started to produce the antibodies all over again...a new trigger or whatever.

Since having antibody tests for Lupus every few months, I can see how they change all the time. Sometimes they are present and sometimes they are not. I've gone a few years without the dsDNA antibodies, but before that, they were up and down all the time. I don't know what makes those come and go either. I think it's the same sort of thing with anti-platelet antibodies.

That's my theory.

Erica, I often wonder that myself. The B cells are supposed to repopulate after 7 to 10 months, so why does the ITP take a while to reappear? Got me!:blink:

They do repopulate. After my first Rituxan use, I only got 13 months before I had to treat again. The second time, I got over 6 years. I do not think Rituxan itself was responsible for the long remission. Antibody production just stopped. It only happens to some of us, not all. Just more proof of how strange autoimmunity is.

Today my hematologist told me he will give me one four week course of Rituxan if my count keeps falling after the Prednisone wears off, but that if I respond to Rituxan treatment and then relapse at any time after that it means I'm refractory to Rituxan and need a splenectomy. If Rituxan can put me in remission for over a year and he still wants my spleen, I think I will switch Hematologists. Does anyone know the long term risks of using Rituxan over and over as each remission ends?

Dave,
You are on the right track, your hematologist doesn't know what he is talking about. There are many people on this board who have had more than one successful treatment with Rituxan. And for many of us, the second (and sometimes third) response was even better and lasted longer. First time I had Rituxan I got 9 months. Second time is almost three years and still counting. Or maybe almost four years? I lost count!
Erica

Dave,
P.S. - there is no research I've ever heard of that documents risks of repeated Rituxan. If you want to do your own research you might want to look at literature where they use Rituxan for blood cancers because it's been used for that for longer than it has been used for ITP.
Erica

Dave:

It's almost expected that a patient will relapse at one point after Rituxan. The literature supports 6 to 12 months of remission for those who respond. Having a sustained remission is possible, but not presumed, and some patients achieve that.

Being refractory to Rituxan means having no response at all, ever. Words are getting all jumbled up here.

Most people that I've seen here tend to not do more than two or three rounds of Rituxan. I'm not sure I'd have gone for more than two either because the risks are not known. People find that they either don't need that third round, or they are ready to try something else.

I would do a third round of Rituxan if this one wears off but I can't because I had an allergic reaction (head to toe hives). Agree the risks are not known. Except for the allergic reaction though it was a pretty easy treatment with long lasting benefits.
Erica

I have had two rounds of Rituxan. First lasted 16 months, second is over 2 years now. Dr said if counts drop again, to consider Promacta. I thought alot about the long term affects of Rituxan especially after a second dose. But I finally figured why put the cart before the horse. Thinking about what might happen does me no good. Who knows what can trigger ITP again after years of remission. Something that was fine before may trigger it later. Our bodies are constantly changing, especially with age. I feel the cause behind alot of the dieases/disorders are due to the pollutants in the air, chemicals in foods and stress in our lives.

Long term risks of Rituxan agreed unknown. Long term risks of Promacta and nPlate also unknown. We know the bad long term risks of prednisone. Not sure about IVIG - I know I've seen several on the board who use IVIG over and over to treat. We know about long term risks of splenectomy. It seems to me that all of these treatments have either significant or unknown long term risks. It's academic for me since I can't do more Rituxan but I'm not sure why I'd go from one unknown long term risk to another unknown long term risk if the first one was working well for me.
Erica

I don't think unknown risks are all equal!

Wait a minute there Ann - explain that one! If they are 'unknown' then how are they not equal? They would have to be 'somewhat known' in order to rank them at all??
Erica

I think she means the "unknown" risks are different for each treatment and for each individual. The risks of Promacta for you may not be the same for me, so it is "unknown" how it will affect you vs me. Life is a huge "unknown" journey.

It reminds me of the Animal Farm quote.. "all animals are equal but some are more equal than others".

What I really mean is that we, or the researchers can do a best guess of the sort of problems that might occur and those guesses may not be equal. But that is what we will make our choices on.