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Thread: 2 vs. 4 RTX Infusions - Thoughts?

  1. #11
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    Thanks everyone and especially like your post Me2, thanks for taking the time to write it Totally agree with your perspective, due to the lack of research we really do have to go with what our gut tells us, we know our body the best. When I started CTX last August they (my doc and dr. langford) wanted to do 50mg and I knew that my disease was more active than that so I asked to start at the full dose of 125mg, which was the right choice. I think my doc was surprised at how much CTX was needed to get me more under control, my doctor now really does let me go with my gut because the tests just do not accurately show my disease (I have never been positive for ANCA or had an abnormal sed).

    For what it is worth, part of my decision to go with 2 vs 4 is based on the fact that with one dose last time I had a huge change for the better after just a few days, and after the second I was almost normal. I just don't think that I saw much improvement from 2 to 3... BUT I would do it the same way again for that first round to help get the Wegs under control, the only reason I personally am thinking about 2 instead of 4 is that I have just finished 5 1/2 months of CTX and am on Imuran...

    And still curious to hear more thoughts on this! Thanks to everyone for their perspective, really appreciate it!

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    Tough choices for sure. One just has to make the best decision they can with their doc and others involved. I've heard of doing the one infusion every six months as well. My doc said he would be more comfortable with doing the 4 infusions. He has only ever done the 4 infusions.
    Phil Berggren, dx 2003

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    Hi Anne!

    I had 2 rtx infusions last May, and 2 rtx infusions in December. I felt weggie-great from Mid-June to late November, and was able to taper pred from 25mg to 10mg. But late November, the wheels fell off.........the 1st round of rtx "ran out", for lack of a better term, before the scheduled December infusions. I had a multitude of mild/moderate symptoms creap back in, and bad fatigue, which pretty much had me wiped out for the whole month of Dec, and into Jan.

    Today I saw my docs, and they said, that perhaps if we had done the 4 infusion protocol, I'd have made it the full 6 months or longer. So, we are now considering whether to do 2 or 4, the next time around.......yes, a 3rd round is coming for me.

    I play a full role in deciding what to do next. If they suggest something I don't like, we discuss it. Now that I've tried the 2 infusion protocol, I would be willing to try 4 next time, knowing what I know. Meanwhile, we are adding cellcept to my daily regimen. I'm not thrilled to add another drug, but I agreed to it. I think it's the right thing to do, because the wg is not under control - each time I decrease pred, I get some sort of protest from the wg dog. Most recently, time it was ear symptoms, headaches, knee pain, and more fatigue. We also hope it will put the dog to sleep, so that I can get to my next scheduled rtx without another hiccup.

    ANYHOW, what I understand from my visit with the docs today, is that they try the 2 round protocol when they feel that the disease is mild to moderate, and they use the 4 round protocol when the disease is more severe, or in cases like mine, when the wg is just plain STUBBORN. If I recall correctly, yours is pretty subborn too.
    ~ Chris ~
    (Female )

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    Chris,

    Thanks for the info. It really is interesting to hear how others have done RTX. Very curious to see what comes of the chat with my doc. Mine, I am hoping, is not so much stubborn as it is really hard to tame initially. From 1994 to Dec 2010 I did not have to take any meds for it, but then it blew up. Am hoping that after doing the same thing I did last time, plus RTX, that it will go back into remission for a good long while

    Just as an fyi, my doctor is planning on doing RTX every six months for years to come, so not surprised that you have a 3rd round coming.

    Anna

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    Quote Originally Posted by me2 View Post
    When Rituxan was first used in this country 4 infusions was THE protocol. It was the protocol I began with.
    When I next went for treatment my doc scheduled me for 2 infusions. I asked 'Whats up with the 2?" . I was told they were getting good results with using 2 instead of 4. He referred to the 4 as "British protocol" and 2 as "American protocol".

    Glad to know i am a Brit getting the American Protocol!
    I am hoping that 2 is enough for me though i did research before my infusions were given and found people who where weightier got 4 doses instead of 2. I'll know next week if 2 was enough.

    I am another medical rebel and constantly question my docs. I stayed silent for too long before diganosis and deeply regret doing so. We gotta keep these doctors on their feet. No one cares more about your health than you do. So my advice is do your research and fight your corner.
    "I believe that I have seen a negative attitude kill people, but I don't think that a positive one will cure you. However, I know that it Helps". Jack

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    "Glad to know i am a Brit getting the American Protocol!"

    Lets hope it works no matter what you 'col it! ! I like your fighting spirit Freaky. It seems to be something we get along with the WG . That statement was made to me at least a couple of years ago - and by one doctor. I don't know what others would say today.
    I'm learning a lot in this thread , thanks to everyone contributing. Some of you have world class WG doctors working on your case and I think you tend to hear more directly what the current thinking is. I think my WG doc is very well informed but is somewhat hesitant to talk to me like a colleague. My primary guy knows me from thirty some years ago when I first saw him with WG and has learned to trust me. He talks to me like a colleague, unfortunatly he does not keep in the loop on the latest WG stuff. He has moved on to other interests. He worked with Anthony Fauci way back when so he is no slouch as doctors go. He has told me he is not 'up' on WG treatment. Effectively telling me to rely on other doctors for up to date info and also to rely on myself to keep up to date. He has always supported me in being self informed.

    Phil- Do you have any more info you could share on what you heard about the single dose protocol like I am recieving. It appears to be a relatively new idea as not many here are doing it.

    Another question I would like to pose to any willing to dive into it is IF dosage (1 or 2 or 4) of Rituxan is matched to disease severity (a fairly new concept to me) then for those of us with very serious illness (like on my cerebellum etc) and few to no markers (I am 'ANCA useless') our personal assessment and input becomes VERY important. Our understanding of the dosages and how they match up to the severity of our situation becomes VERY important. Achieving dialogue with our doctor becomes very important. And if our doctor does not come up to speed to stand up for ourselves and what we believe our situation to be.

    I want to learn a lot more about this subject. I hope there is more input , I know we have some fine minds and people with experience , like Sangye, who could shed some more light on this subject.

    I am still unsure about the specifics of Rituxan treatment. In other threads I have read that a single treatment takes out only a small percentage of circulating B cells. I think it is important that I understand this. Can anyone suggest somewhere that I could read up on the specifics of Rituxan effects?
    I do know I was told at some point, by someone, that the scientific community was surprised that Rituxan treatment and the subsequent depletion of B cells did not make people more susceptable to infection than it does.

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    Quote Originally Posted by me2 View Post
    To throw another wrench into this question let me add that treatment has now evolved into giving 6 month 'booster' shots of Rituxan because of the high rate of relapse beyond that time frame. The last 'booster' I had my doc only gave me ONE infusion.
    I ask "Whats up with that?" My doc tells me he knows a guy in England who has been treating his patients this way and getting good results. "Great. Whats his name?"

    Doc says he can't remember his name. Great, that means I can't look for information using his name. I looked for information anyway - in vain. My next visit I trying and pin him down even more. He assures me a significant number of patients have been treated for a number of years this way with good results- but still won't tell me who is using this protocol.
    I know that Addenbrooks Hospital in Cambridge, England uses the 6 month method. Perhaps now you might be able to find the information you want.

    Jim
    You give but little when you give of your possessions. It is when you give of yourself that you truly give. Kahil Gibran

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    [QUOTE=freakyschizogirl;54609] ........ found people who where weightier got 4 doses instead of 2. I'll know next week if 2 was enough. /QUOTE]


    That may be why my doctor wanted to give me four doses, but the powers that be decided two will be enough. Or perhaps they do not think twenty stone (280 pounds or 38 kilos) to be overweight!

    Jim


    You give but little when you give of your possessions. It is when you give of yourself that you truly give. Kahil Gibran

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    That may be why my doctor wanted to give me four doses, but the powers that be decided two will be enough. Or perhaps they do not think twenty stone (280 pounds or 38 kilos) to be overweight!

    I think 280 pounds is a good argument in favor of the 4 dose protocol. Have your docs argued that yet?
    ~ Chris ~
    (Female )

  10. #20
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    I talked to my doc this afternoon to propose the 2 over 4 and she is going to email Dr. Langford about it, so very curious to hear what they come back with. Will let ya'll know

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