Choline on the Brain? A Guide to Choline in Chronic Fatigue Syndrome
http://phoenixrising.me/research-2/the-brain-in-chronic-fatigue-syndrome-mecfs/choline-on-the-brain-a-guide-to-choline-in-chronic-fatigue-syndrome-by-cort-johnson-aug-2005
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Rituxan does wear off :(

Discussion in 'Rituximab: News and Research' started by Rebecca2z, Dec 21, 2015.

  1. Rebecca2z

    Rebecca2z Paradise, Ca

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    Just wanted to give an update. About 6 and 1/2 months after the fourth round of Rituxan I contacted my doctor and told him I was seeing some signs that the RTX was wearing off. He said I had to do some B-Cell tests in order to know if I am due for a maintenance dose, so I drove the 8-9 hour round trip just to do the test. He contacted me and said no it was too soon.

    Now jump ahead 2 months and I write him again and tell him I am really going down hill. He requests I come in again and have the B-Cell test which I do. He calls me and says yes it is time, I will need two rounds instead of one.

    I am going this Wed for round one. I am in HORRID pain again in all joints, massive headaches, profound fatigue all the things we all complain about. The only thing that has stayed strong is my ability to think clearly.
    Which is great as this has always been so debilitating.

    It is very very hard to go back down hill after having several months of feeling so great, I am bummed this doesn't last longer. My joint pain is unbearable, worse than I ever remember. I just cry myself to sleep at night.

    You know if it was just in one or two joints or maybe some neck pain it would be fine but pain in every single joint, hip, and spine is so overwhelming and on top of that the severe burning in my feet is back, so I know the RTX for sure helped that.

    I am really sick with a cold and a little fearful about doing the RTX but I was suppose to do it two weeks ago and I put it off because I had a bad fungal infection in my central line. ( there was a spot in my lung either fungus or pneumonia) I can't stand the joint pain and being bed ridden again so I am going for it.

    I hope you all are doing ok and sorry I haven't visited more but I have been so sick I couldn't do any computer work.
     
    Last edited: Dec 21, 2015
  2. L'engle

    L'engle moogle

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    Thank you for updating us! I really hope you feel better with the maintenance dose. :hug:
     
    merylg, Marky90, Jennifer J and 3 others like this.
  3. Gingergrrl

    Gingergrrl Senior Member

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    Oh, Rebecca, I am so sorry to hear this news and your update brought tears to my eyes. But please do not give up hope and you have been such an inspiration to me. Please rest and get better for your next trip up to Stanford. I will be there myself in February (not for Rituxan) but to be assessed at a different clinic. Will you be there in Feb, too?

    Sending healing thoughts and prayers your way :hug::hug::hug:
     
    Billt, merylg, Jennifer J and 2 others like this.
  4. Rebecca2z

    Rebecca2z Paradise, Ca

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    Thank You Gingergrrl, I will hang in there and the support from PR is in part why !
    yes I will be at Stanford on Feb 18th and again on Feb 23rd- when are you going to be there ? Also where are you coming in from, I can't remember?
     
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  5. Gingergrrl

    Gingergrrl Senior Member

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    I can't believe it, my appt at Stanford is also on Feb 18th! I am not joking... I booked it 5-6 months in advance b/c there was a long waiting list and this is the date they gave me. What are the odds! We are coming from Los Angeles and also driving. I think it is a seven hour drive for us so you must be slightly south of us. Am happy to discuss further via PM if you feel up to it some time.

    ETA: Just looked at a map and now feel completely stupid that you are not south of us and are much north of Stanford. I had not heard of Paradise, CA before... hope you can forgive me!
     
    Last edited: Dec 21, 2015
    Rebecca2z likes this.
  6. Groggy Doggy

    Groggy Doggy Guest

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    Best of luck to you in getting further treatment at Stanford. I hope you have a save drive, that's a long round trip.
     
  7. Gingergrrl

    Gingergrrl Senior Member

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    Rebecca, just answered your PM. Stay strong.
     
  8. ahmo

    ahmo Senior Member

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    Very sorry to hear of your pain Rebecca. Have you looked into LDN? What great thing the two of you have appts at same time.
     
  9. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Very sad to hear this this Rebecca

    This kinda goes to show that one should follow the Haukeland-protocol, and not improvise..
    At least you now know that you probably got a variant of an autoimmune disease, and you found a drug that did work! That puts you in a better spot then most :)
    Wishing you a speedy recovery.
     
  10. daisybell

    daisybell Senior Member

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    Thinking of you @Rebecca2z and hoping that the rituximab effect kicks in quickly for you. I'm assuming that because it worked so well before, it will do so again...?
     
    Rebecca2z likes this.
  11. taniaaust1

    taniaaust1 Senior Member

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    Very sorry to hear this Rebecca. The whole thing makes me feel very sad for you and for all of us.
     
  12. halcyon

    halcyon Senior Member

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    She's not receiving it for CFS though.
     
    Gingergrrl and Never Give Up like this.
  13. Asa

    Asa Senior Member

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    Has she (Rebecca2z) posted what she's receiving it for? Just curious but of course want to be respectful of privacy.
     
    Rebecca2z likes this.
  14. lansbergen

    lansbergen Senior Member

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    She did
     
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  15. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Although it appears to be an effective treatment for some, it doesnt seem a cure. I hope they will keep drilling down deeper in research to find the exact cause and a longer lasting remission period or cure.

    Thanks for sharing your experiences with us. I hope u bounce back quicker than the initial treatment .
     
    ukxmrv and Rebecca2z like this.
  16. gregh286

    gregh286 Senior Member

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    how can doc tell from b cells that you need another dose.
    just a b cell count?
     
  17. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Oh, thanks for clarifying!
     
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  18. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    I would have to disagree here, it has "cured" many people in Norway. Meaning they still haven`t relapsed.. It`s not a cure for everybody though, but that`s not expected either.
     
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  19. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Im not arguing here but for those that it hasnt, whats wrong with looking deeper.

    I say it doesn't seem a cure as it hasnt been around long enough . Its like cancer treatments where they say people are in remission and isnt called a cure until after so many years . I can't say i have heard any long term remissions yet, only because its not been around long enough .

    Plus whenever anyone asks information on cure rates, everyone jumps down peoples throats saying that this information shouldn't be released until all the research is completed. Either your letting the cat out of the bag or just making assumptions .
     
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  20. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    I`m not making assumptions, I talk privately to some people from the phase 1-study. Those cats, are already out of the bag. And they have been meowing healthily for several years now.
     
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