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GOOD things happening!! Am I a responder???

Discussion in 'Rituximab: News and Research' started by Jacque, Aug 27, 2012.

  1. ThatBloke

    ThatBloke

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    I'm so glad it is working for you - even if in ups and downs .
    Please do keep us posted on how you are going with it. There are so few glimmers of hope in the ME/CFS landscape that this little ray of possibility is wonderful, even for those of us just reading about it.
     
    merylg and alex3619 like this.
  2. Starfive

    Starfive

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    Thanks so much for sharing your experience. I am fairly new to this illness, only four years, yet can really share with you so many of the trying symptoms... the pain that one cannot live with, the burning, the hot flashes and chills, the bed and the sofa. The brain down the tubes and no energy to the core. Up till 4am as well...

    Just reading about your up happy week gave me hope!
     
  3. jimells

    jimells Senior Member

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    I love that image! Reminds me of the cops in New York City...

    Jacque - Is your party open to anybody? Let's tie our couches to the back of a pickup and drag 'em down the road! At least we'd be outside doing something fun...

    p.s. I hope that stuff starts working for you again.
     
    Tammy, merylg and taniaaust1 like this.
  4. GracieJ

    GracieJ Senior Member

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    It's okay to sit on the pity potty.... just be sure to flush when you are done!
     
  5. ThatBloke

    ThatBloke

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    Sounds kinda like a classic case of doing too much too soon. I used to do this every time I had a "good" spell until I learned to take it easy (well, sometimes) and simply enjoy feeling not-so-sick rather than trying to run around and do a bunch of stuff.
    Hope you can build the patience to hang in there next time and take it easy, let the body rebuild itself slowly.
    You'll get there.
     
  6. Jacque

    Jacque Senior Member

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    I know... looking back I have been doing this for at least 20 years... Gotta get everything done when things get even a little better cuz you know the next crash is just around the corner... What a life..... thanks for advice!!
     
    GracieJ, Hanna and merylg like this.
  7. Jacque

    Jacque Senior Member

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    Now that sounds like my kinda of party....could we make a few cocktails too - I mean since we are going to attempt to have some fun and all... uggggh Thanks for the great laugh!!!
     
  8. Jacque

    Jacque Senior Member

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    FLUSHED... That dramatic return of symptoms really affected me emotionally for some weird reason... Maybe just cuz I'm old n tired......... sigh
     
  9. GcMAF Australia

    GcMAF Australia Senior Member

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    Jacque
    i just want to say how much I / we care.
    GcMAF
     
    jeffrez likes this.
  10. Rooney

    Rooney

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    Jacque,
    As pain is a major problem for you, I wanted to ask if you attribute any of it to this treatment? With my pitiful brian I haven't understood about new pain issues with other patients in the pilot study as well. I hate that for you. Really.
     
  11. Fredrik

    Fredrik

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    Jacque: Hi. How did u manage to get rituximab? Private doctor or through the public health system?
     
  12. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I don't know when Jacque will be here again, so....She is a patient of Dr. Kogelnik near San Francisco. He has a number of patients on rituximab.

    Sushi
     
  13. Fredrik

    Fredrik

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    Thanks Sushi!
    Okey, so he is a private doctor? Have you any idea what the price for this is?
    I live in Norway and its almost impossible to get it here, so I am thinking about going to US or another country to get it. A country in Europe would be best, since its closer. Does anyone know about where I can do this? :)
     
  14. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Fredrik,

    The information about treatment with rituximab is scattered among several threads but I think you will find a lot of it here: http://forums.phoenixrising.me/index.php?threads/rituximab-discussion.18028/

    The price is discussed, but I think his patients are just paying for infusion costs and that the drug itself is being paid for by some other party--I forget the details. It isn't exactly a clinical trial, but his patients are not paying for the drug themselves. You might send a "conversation" to Jacque to get the details.

    I think you would have to live in California for a year to take rituximab with Dr. Kogelnik, though some fly in for each infusion. Here is his website: http://www.openmedicineinstitute.org/Welcome.html

    And here is an interview with him:

    Best wishes,
    Sushi
     
    Xandoff likes this.
  15. Fredrik

    Fredrik

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    Thank you Sushi :)
    In that thread they say about 3000$ for each dose. But, that u need one dose every 3month...
    Interesting movie! I've read about a few here in Norway who got the treatment in the study, "the symptoms were gone in a few days" one women said. I've sent a conversation message to Jacque :)
     
  16. Jacque

    Jacque Senior Member

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    No the Rituxan has not "created" any new pain for me... Pain has always been a HUGE issue for me. Nerve pain everywhere, bone pain and tenderness, muscle pain. The only thing that does not hurt is my hair and nose!! :(
     
  17. Jacque

    Jacque Senior Member

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    Hi Friends!
    Well.... I am definately off the Pity Potty... and yes I DID flush! lol All of last week was pretty much another ride on the couch. Kept feelin like I was "comin down" with a cold or sumthin...but nothing ever completely manifested.

    Nodes in neck are not as painful and I am back to vertical a lot of the time. But honestly I feel like Doo Doo... I so badly want to be positive and be a ray of hope for those of you watching the studies on Rituxan. I have only had 2 infusions and did have a few weeks where I didn't feel so "fluish"... have 4 more infusions to go over next 13 mo... So will keep you updated.

    Currently... not much change except I am vertical a lot more of the time. Everything still hurts... except my hair and nose that is!:(
    Warmly, Jacque
     
    Hanna, merylg and GracieJ like this.
  18. Sherlock

    Sherlock tart cherry etc. for joints, insomnia

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    In the Norwegian study, Figure 3 tracks the symptoms in individual patients, every 2 weeks. There's a lot of variance. Yours seems maybe closest to G.

    Thanks for posting an update.
     
  19. GracieJ

    GracieJ Senior Member

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    More likely it is just stinking disappointing, emotional prison by itself.

    Glad you are doing better this week. Hopefully things will even out to a better forward progression, gradual and steady improvement without the spikes, as fun as they are for a few days.
     
  20. Rooney

    Rooney

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    Jacque,
    As you may already understand from being such a long-term patient, you are not alone in your emotions with an improvement and a setback. It's very upsetting for us.

    I am glad for you that the drug has not brought on new side effects.
    All the best, Rooney
     

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