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Thread: Rituximab Question

  1. #11
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    Hi Marta,

    Got your message, my email address is [email protected].

    So, I was on cyclophosphamide for a year, first 6 months of monthly infusions followed by a big relapse, then 6 months of oral cyclo and again another major relapse. So, in March 2009 I tried Rituxan and I don't remember being too concerned about the JC virus, but all I know is that finally I had relief and was finally able to be stable on coming down to 10mg of Prednisone. I took Methotrexate at the same time which I still take, and now after spending last year trying to come off the Prednisone - 1mg per month, I was relapsing again so I've just completed my first infusion of Rituxan again and have the second one next week, and I can tell you, it is a piece of cake for me. I feel better and other than not "feeling" well for a few days after and still a little more tired than usual, I'm looking forward to trying to come off the Prednisone again.

    Even with the chemo which kills all of our immune system - good and bad cells - at least the Rituxan only targets the B cells, so yes, WG is something we'll always have and we'll always have to monitor, but I haven't been as sick (which brings on the immune system, which brings on the WG), and I feel "almost normal" again, the best I've felt since I first got diagnosed.

    Good luck with your treatment and if you're having it in Alberta, I hope you have some kind of coverage as Alberta hasn't approved Rituxan - I changed my Manulife coverage to 100% so they are paying the almost $10,000 as Blue Cross will not cover for it.

    Keep us posted!

    Gurinder

  2. #12
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    I just heard from Genentech (the maker of Rituxan), and since my insurance company won't pay for it they have approved me to get the drug for 1 year at no cost. They will ship the first dose to the Dr this coming Monday! If your insurance company won't cover the drug... ask your doc about contacting them directly. The whole approval process has taken about 5 weeks... but hopefully it will be worth the wait!

  3. #13
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    LaRoche is the Canadian company, but I think you have to have a low income to qualify for some kind of coverage.

  4. #14
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    Miskey, that's so cool. I just read that on Facebook too. I'm super happy for you. I think I'll have no problem getting it done.

    Gurinder, that's great to hear. I can't wait to feel good again. Haven't felt that since September.

    Phil, she is worried because things aren't getting better. My ESR is still in the high 40's my CRP is still in the high 20's my LFT's are better, but she thinks I should be responding better to treatment and I'm not. Like I said earlier, it's the first time I've heard my specialist say she's 'concerned about me', and it was such a relief to hear that. I listed off my symptoms too and she defintely doesn't think that I should be feeling this way after this long on cytox - more than 9 months now.

    PML sounds like a nasty thing that you can't recover from and is activated by the JC virus (named after the patient who's brain was autopsied and they got the sample from for the first time). Apparently the latent virus can be reactivated by rituximab and the process of killing off the B-cells. It's a common virus with antibodies found in a significant part (70-90%) of the population (a gastrointestinal and/or tonsils virus that is quite inocuous) but can cause a whole lot of trouble in the immunosupressed. It's small enough to travel through the blood brain barier and once in the brain attacks the white matter. Only one person has survived this in 2010. Before him/her no one survived for more than one year.

    I know I sound like a bit of a panicer, but like I said, I've been playing the wrong odds lately, so wanting to go in prepared. But if so many of you have had it and no doctor has shown any concern or hasn't tested you for the virus, then I guess I'm over-reacting a little. Just a little. ha ha.

    Thanks so much for all your input.

    Gurinder I'm sending it off to you pronto.

  5. #15
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    Thanks Marta for the extra info. This puts my mind at ease.

  6. #16
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    Marta, SO happy about your new doc and you getting rtx. PML is a very serious, typically fatal condition but is very rare. It can occur with anyone who's immune-compromised and is a risk with all our immunosuppressants. Both rtx and cellcept carry the warning specifically. Both of them target B cells, unlike our other drugs.

    When Dr Seo put me on it he said it was a very low risk and not to be concerned-- learn the signs/symptoms and put it out of your mind. There are tons more complications that are much more likely to happen than PML. That's my sick way of looking on the bright side. LOL

  7. #17
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    Hi Marta,
    Very glad to hear of your good experience with your new doc! It is an amazing relief when one finds a professional that inspires confidence. You bring up two important questions regarding use of Rituximab. First regarding PML: My daughter sees Ulrich Specks at Mayo...my understanding of PML (which is coming from my limited brain,) is that it can occur with any significant immunosuppression. It is more common with oncology based medicine, as the immunosuppression there is more profound. So it is a bad thing, but appears to be related to the level of suppression, not simply one drug vs others. Rituxin is less generally suppressive than cytoxin, so I don't know if that translates...Dr Specks indicated that PML (rarely) occurs with many drugs, especially drug combinations (ie, cytoxin, rituxin plus others...like my brother is on for tx'ment of leukemia).

    Second good question you bring up is regarding B cell repopulation after suppression. I learned after my daughter's first infusion, that 'peripheral' B cells can hide, and not all be affected by Rtx (which may explain some continued joint discomfort she experienced after treatment). I just read an article that was about Rituxin and treatment of lupus.

    Phenotypic Changes of Lymphocytes in Patients with... [J Rheumatol. 2010] - PubMed result

    It partially discusses your original question that explored maturity and memory of those depleted and repopulating 'naive' B cells and the subsequent effect on immunity (the folks with lupus relapse). More interestingly, it is an attempt to address my old question of how long can this particular treatment last, and what happens when those 'new' B cells re-emerge.
    Last edited by Palmyra; 01-24-2011 at 02:36 AM.

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    Excellent info, Palmyra. I've actually been unwilling to ask Dr Seo some of those questions, like immunity memory and what happens when B cells re-emerge. I don't think I could stand to hear that my entire immunity memory is gone, even though I suspect that's the case. And it seems to be a roll of the dice regarding what happens when B cells return--some people stay in remission anyway and some require re-treatment. The biologist in me wants these answers, but the person with Wegs who is trying to survive the moment has her hands over her ears.

  9. #19
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    Oh boy, I know how you feel, Sangye! My background is in microbiology, and this stuff is fascinating to me. However, as someone who has Rituximab as a fall-back position waiting in the wings, I really don't want to know that much about it. LOL

  10. #20
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    Thanks for the link Palmyra. It's good to know this stuff in my overactive little brain. This is all helpfull info from everyone and also sets my mind at ease. Thanks! Muchas muchas thanks!!!!

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