Still puzzeling over diverse dosages of Rituxan

[me2]

So here is an article that makes me scratch my head some more (which I can really feel now with thinning hair)
Low dose use of Rituxan for an autoimmune disorder. Ok Al, if you are watching, just dive in and explain all this for me. Or anybody, I would even listen to aliens at this point.
Really, I'm not quite grasping the mechanism of Rituxan treatment and use.
And now I know even less

Low-dose rituximab plus steroids demonstrated safety, efficacy in autoimmune hemolytic anemia | HemOncToday

[pberggren1]

I'm not sure what you are asking here. Rtx has already been proven for use in Wegs as a main drug to get it into remission. It of course does not work as fast as ctx but is much less toxic.

[Chris G]

If your question is.....why do there seem to be so many different dosing guidelines........part of the confusion may be due to the fact that the article is not related to wg. The disease they're discussing, seems to respond to rtx treatment at much lower doses than we need.

Generally we receive either 2,000mg rtx via 2 infusions (1,000mg each), OR 3,000 mg rtx via 4 infusions (750 each). Some docs think 2,000 mg is enough (and in some cases it is enough). But in some cases, it is not. For example, larger people may to require more than 2,000 mg. Also, some people have more stubborn wg, and require more than 2,000 mg (I seem to be in this group).

Some docs prefer to go right by the book, and they stick with the method which was proven in trials - 3,000 mg 4 infusion.

[me2]

Can't you read my mind? I'm on prednisone ya know and I have super mental powers.
I was continuing a discussion from another thread that has been going on in my mind.
You are right Chris about the dosage guidelines you state so well. But add that there are strange people out there also getting a 6 month dosage of only 1,000 mg - me. My doc says he knows someone in the UK who has been doing this for a long time and has had good results.
I guess I'm trying to get clear on how Rituxan is working. Sangye says , I think, that she was told it takes out circulating B cells which amount to 10% of total cells. I may have it wrong but it was something like that. I know she was saying that it doesn't take out all B cells everywhere - so how does it work? And how can it work in the case I found above? Unfortunately they don't define 'low dose'. I may try and find the whole study at the University library where I go for treatment.

The reason I am persuing this is to bring some of this knowlege and awareness together for us patients so we can make our own decisions. If I go to Dr A and get 4 infusions every six months and Dr B would give me 1 infusion every six months - which Dr is doing the proper treatment and based on what criteria? The difference here is a factor of 4. That is HUGE. I want to know the criteria and all the risk factors so I can decide myself how I want to be treated. I know of no where I can educate myself on this.

And you are right too Chris that this article is not about WG but it IS about how Rituxan is being used and that MAY become relevant to WG. WG drugs and knowledge was mostly gleaned from stuff they were doing to help OTHER conditions. So it keeps me curious.
It is surprising to me that it has a use at 'low dose'. When Rituxan was first used for WG it was only done using the 4 dose protocol. Now there are a lot people using 2. Now there is at least 1 person (me) only using 1 dose.

I assume the issue is much like the evolution of the use Cytoxan. Cytoxan in the early days of WG treatment (mid to late 70's) was given for two years initially ( I know because I was on it) and now they have whittled it down to months. Its possible that at the time I recieved treatment there were already Dr's that knew you didn't need to use so much just like now there are Dr's using different doseages of Rituxan. Not just a little different either - I know Sangye has mentioned weight as one variable but even that concerns me, I've been on prednisone a long time and I am not skinny and svelt, yet I am getting 1 infusion at six months. Where is it written someone of weight 'X' gets dose 'B'?

I've tried getting my doc to discuss these issues and he is not much help for whatever reason. Maybe he thinks I don't trust him. Quite the opposite , I'm letting him treat me in a way that none of the other 'big giant head' WG Dr's are - very differently.

So, I want to understand these things much more so I can decide myself and whatever these criteria are it would be good for others to know so they can make their own decisions if they want to. I could choose a particular Dr that I think is great and just do whatever they say but even that is not as good, in my experience, as having my own understanding and making the decision myself.

I wish the symposium were closer and I could corner one of the 'big giant heads'. I did that at one symposium many years ago and I forget what I asked this doc in the hall way but his answer I remember clearly (Dr Specks) "You live on the wrong coast to have vasculiuis. All the research is being done out here. You live in a good place to have a heart attack"

What he was doing was explaining in plain terms was why it was so hard to find a top level doc on the West coast. Before that, I didn't realize that different areas of research are centered in different areas of the country and because of that your level of treatment could vary widely. My dad later had a heart attack - and boy did he get good care. Not only that I was able to relax a little knowing he was in a geographic area of top notch heart docs. But now I'm off the subject.

If anyone can steer me to the cutting edge literature that can explain the wide variance in protocol I'd appreciate it. And I'd come back and let ya know what I found. So far I don't know much. I know whats being done - I want to know why. AND are the results being tracked somehow. Who is keeping track of the success of using 1 dose every six months? It would be good to know the actual results because it could change how others get care.

In another thread we talked (I'm sorry I forget who I was talking with) about developing resistance to Rituxan. What rate does this happen at and at what doseages? I want a chart I can look at so I can decide which direction I'm taking risk in. Right now I suspect my doc is risking low dose follow ups with me to help prevent resistance from happening- but I'm just guessing. I don't like guessing about really important things.

[me2]

Ok, I just looked at how much I wrote. I will reduce my dose of prednisone tomorrow.

[pberggren1]

me2, the mothership says they need to talk to you ASAP.

[me2]

Ha, thanks Phil. I had my foil hat on and missed the message.

[Al]

I'm not sure I can tell you the best coast to live on, Kirk. Personally, I wouldn't want to get a heart attack just to prove that I can get the best care. Anyway, there are always pluses and minuses: They get blizzards; we get floods. They get hurricanes and tornadoes; we get earthquakes and volcanoes. We get brown grass in the summer; their grass looks green from here.

I did read the article, which I found interesting, though it left a lot of questions in my mind. How it relates to an RTX protocol for WG is: it doesn't--probably, since it was about a different ailment altogether. Autoimmume hemolytic anemia is, though, an autoimmune disease that is sometimes associated with other AI syndromes. It occurs when certain antibodies attack erythrocytes (red blood cells), leaving a deficit available for carrying hemoglobin. As in the case with many other AI diseases, the standard treatment calls for modulating the immune system. Rituximab (RTX) works by targeting B cells--specifically, plasma effector B cells (those in the lymphatic system are fairly well protected, and memory B cells live a long time). As antibodies are manufactured by the B cells, keeping those cells from cloning rapidly will tend to suppress the various antibody populations (including the ANCA population). This article describes a novel protocol, however, that uses "low dose rituximab" with added steroids. But I couldn't tell exactly how the protocol was carried out. It is possible, I suppose, that a similar protocol could be effectively employed for WG, But that would be a hypothesis that would have to be tested on its own.

Anyway, Kirk, I'm glad to see that your steroidal muse is on duty!

Al

[Dryhill]

me2 you state "My doc says he knows someone in the UK who has been doing this for a long time and has had good results" . I believe Dr. Jayne at Addenbrookes Hospital, Cambridge (the UK's leading centre for Vasculitis research) has had quite a bit of success with administering five infusions of RTX, one infusion is given every six months for two years.

I doubt you will find the sort of information you want as different doctors/hospitals have different ideas as to the best treatment. My doctor wanted me to have four infusions (he seems to think I am a trifle overweight, damn cheek I am not quite 300lbs so almost a stick!) but the accountants that run the hospital and clearly know best said no only two infusions.

Jim

[Al]

me2 you state "My doc says he knows someone in the UK who has been doing this for a long time and has had good results" . I believe Dr. Jayne at Addenbrookes Hospital, Cambridge (the UK's leading centre for Vasculitis research) has had quite a bit of success with administering five infusions of RTX, one infusion is given every six months for two years.

I doubt you will find the sort of information you want as different doctors/hospitals have different ideas as to the best treatment. My doctor wanted me to have four infusions (he seems to think I am a trifle overweight, damn cheek I am not quite 300lbs so almost a stick!) but the accountants that run the hospital and clearly know best said no only two infusions.

Jim

But, hey, Jim--if you have an accounting problem, I guess you live on the right coast....

Al