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Has Anyone Seen Dr. Kogelnik?

Discussion in 'ME/CFS Doctors' started by InvertedTree, Sep 2, 2010.

  1. satoshikasumi

    satoshikasumi Senior Member

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    When I say "high-risk" I mean that in theory. There is evidence that antivirals have some kidney toxicity, and there is evidence that rituxan carries a small risk of serious infusion reactions or serious infections like PML.

    In fact, there have been no incidents of toxicity reported in neuroimmune patients. This includes the Norwegian research, Dr. Montoya's study, Dr Peterson's use of antivirals, and Dr. Kogelnik's cohort.

    Some patients do not respond to the treatments. Some patients report feeling worse while on the drugs. But no one has had organ failure or death, to my knowledge, in this patient group.

    So it's something to worry about but it probably hasn't actually happened to anyone with this condition yet.
    SOC and Kati like this.
  2. IreneF

    IreneF Senior Member

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    I am seeing Dr. K. I have had two Rituxan infusions. The last one was on Thursday. The first one wiped me out, but the second one was a piece of cake. I expect to return to my usual state in a few days, based on what he has told me. I am scheduled for a third infusion in late May.

    Irene
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    cool, thanks for sharing your experience, please keeps us informed of how you go. Good to see someone with personal experience with this. Are you able to tell us what sort of testing and viruses you have tested psoitive for etc and do you feel after 2 infusions that you are feeling better then pre ritux??

    cheers!!!
  4. IreneF

    IreneF Senior Member

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    I've been seeing Dr. Montoya for a few years and tested positive for EBV and HHV-6 antibodies, but they fluctuated a lot. Also positive for the usual oddball infections such as Mycoplasma pneumoniae. Dr. K did some more testing and was esp. interested in looking at natural killer cell function, which was fairly low. He said the other immune function tests were fine.

    I am not expecting the Rituxan to make a big difference in the near future. I would be very surprised if my current more-or-less functional state lasts more than a few days. (I'm usually in bed or on the couch.) Dr. K said people will have brief periods of feeling better, which should start lasting longer and longer.

    My impression is that this is less of a big deal than I expected.

    Irene
  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    thanks for sharing.

    cheers!!!
  6. SOC

    SOC Moderator and Senior Member

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    Or Dr Lerner's patients, either.
  7. acer2000

    acer2000 Senior Member

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    Interesting that Dr. Kogelnick is using Rituxan now. Since he is very interested in NK cell function, does he find that that NK cell function goes back to normal in patients that respond to Rituxan?
  8. IreneF

    IreneF Senior Member

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    I don't think he has that data yet. My understanding is that it can take a number of months to respond. I asked him a lot of questions which he couldn't answer, but he said they were all the right questions.

    I am undergoing this treatment because I figure I don't have a lot to lose. So far, so good, but there are more unknowns than knowns. In my case I have been nearly completely housebound and couldn't survive without the support of my family, so my quality of life has been lousy.

    Irene
  9. dsdmom

    dsdmom Senior Member

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    Irene,
    Thanks for sharing your experience. I'm just curious about your above statement - do you mean that this is less of a big deal as far as it not being a big deal to do, or in that you don't expect it to make a big difference? Thanks for the clarification!
  10. IreneF

    IreneF Senior Member

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    Sorry! I meant this is less of a big deal to do, in terms of the experience, and after and side effects. In fact, my husband just told me he was impressed by how much I've been doing and warned me not to overdo it. I had expected to be in bed for several days after each treatment, and here I am stringing words together when I usually can't even find them.

    However, for me "doing a lot" has meant a couple loads of laundry, some sewing, and picking up my daughter after a minor car accident. It's in comparison to my usual utterly sedentary condition.

    Iren
    shannah likes this.
  11. Kati

    Kati Patient in training

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    whew! i'm glad you clarified Irene or I would have canelled my appointment tomorrow :D
  12. Lynne B

    Lynne B Senior Member

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    Hi, Irene,

    That's a fantastic improvement in activity! I hope your energy keeps on improving, even if it's not on such a startling level. Please keep us informed.

    cheers, Lynne
  13. IreneF

    IreneF Senior Member

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    I hope so too, but to be honest I expect to crash any day now. To have an immediate and lasting improvement goes counter to what I have read and what Dr. K told me. But I wanted to share my experiences with the infusions.

    Irene
    shannah likes this.
  14. IreneF

    IreneF Senior Member

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    I have had a bit of a relapse--or rather a return to what has become my usual state--a lot of horizontal, not doing much.... I did make dinner tonight, which is unusual for me. Typically I don't cook, even though I love to do it. So I don't think the Rituxan has had much a short-term effect, positive or negative.

    I am *so* impressed with what Kati has been doing:
    http://bikechick06.blogspot.ca/


    Irene
    shannah likes this.
  15. Scavo86

    Scavo86 Senior Member

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    Does anyone happen to have an email address for Dr Kogelnik's practice please? Many thanks in anticipation :)
  16. satoshikasumi

    satoshikasumi Senior Member

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  17. Scavo86

    Scavo86 Senior Member

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    Thanks ever so much :)
  18. reino35

    reino35

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    Kogelnik

    I have seen him...he's very bright and has a few trial that he has underway.....his trials of CMX001 have been delayed as have the trials planned with Valalomacyclovir...so I'm waiting....

    S
  19. LHCTom

    LHCTom

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    Does anyone know how many patients Dr K is using Rituxan on? Does he have any patients on CMX001, Valalomacyclovir or the traditional antivirals like Famvir or Valganciclovi. Is anyone else on the BodyMedia monitor system?
  20. IreneF

    IreneF Senior Member

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    When I saw him at the beginning of April he said he had about 40 pts. on Rituxan.

    Irene

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