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My Rituximab experience with RA and ME

Discussion in 'Rituximab: News and Research' started by Nielk, Jun 13, 2014.

  1. optimist

    optimist Senior Member

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    @deleder2k Ok, so in my case where I am able to go out and see friends, and take a walk once in a while, it could perhaps be enough with one infusion then?
     
  2. Nielk

    Nielk

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    I never had my hgh tested. I would assume though that it is pretty low due to my poor sleep?
     
  3. Hanna

    Hanna Senior Member

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    @optimist, there are still some hospitals in France, where internal medecine departments will agree to do infusions -after several days of examinations- when they see that off-label use of Ritux may present some interest for a patient.
    I was nearly scheduled for that two years ago.
     
    vli likes this.
  4. Tired of being sick

    Tired of being sick Senior Member

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    Pretty much

    Slow wave sleep is essential for release of growth hormone through pituitary gland..

    If you wake up everyday feeling worse than before you went to sleep the night before,i would make an appointment with a endocrinologist ASAP...
     
  5. ukxmrv

    ukxmrv Senior Member

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    This is not a recommendation as I have no experience but you could try contact@bgli.nl as they may have the contact details for a German doctor who was going to offer Rituximab and other treatments,
     
    vli likes this.
  6. deleder2k

    deleder2k Senior Member

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    No, I was referring to whether or not you'd have to live in the States to receive Rituximab treatment.
     
  7. Blue

    Blue

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    I am afraid you won't find a doctor in Germany anymore doing off label infusions with Rituximab. There has been media coverage about one patient getting worse after off label RTX and since then I haven't heard of anybody being able to get it here.
     
    ukxmrv and vli like this.
  8. alex3619

    alex3619 Senior Member

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    The problem is that Rituximab is a biological pharmaceutical. Its not a drug. Its an antibody product. Competitors can sell something similar, but it wont be the same. This may cause issues at all levels, including coverage by insurance companies.
     
    Izola, MeSci, L'engle and 3 others like this.
  9. Nielk

    Nielk

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    It is one week since my first infusion. I have been regressing with my RA symptoms and I think I understand why. In preparation of starting Rituxan, I had to discontinue Humira (RA med) two weeks prior. Even though I was not feeling better on the Humira, my rheumatologist felt that it was helping in stopping the progression of the disease. Now, I think she has been proven right. The Rituximab and the Methotrexate which I started on a week ago have not kicked in yet, which explains my worsening of symptoms.

    The pain in my hands and especially my feet have progressed. When I try to walk, my right foot becomes pretty painful. I really hope that this is just temporary. In either case, this is not part of my ME. so it should not affect ME patients. :)

    I am not feeling any progress from any of my symptoms whether RA or ME and it is not expected yet at this point.
     
    aimossy, L'engle, NK17 and 11 others like this.
  10. Kati

    Kati Patient in training

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    Fingers crossed for you @Nielk
     
    Helen, MeSci, justy and 4 others like this.
  11. Snow Leopard

    Snow Leopard Senior Member

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    I wish you the best of luck Neilk.
     
    MeSci and Nielk like this.
  12. deleder2k

    deleder2k Senior Member

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    Hm... It is called a bio similar, but I guess that means they are not exact the same thing. But if it is a anti CD20-depleter it should work in the same way? Or almost the same way...? Anyway, with competitors on the market, the price of Rituximab will eventually fall.
     
  13. alex3619

    alex3619 Senior Member

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    I think it would work the same, but it might not be approved the same by authorities, insurance etc.
     
  14. deleder2k

    deleder2k Senior Member

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    If the price falls by 50-70%, and we know for sure that it works on 70% I think many would pay out of their own pocket.
     
    alex3619, vli, Nielk and 1 other person like this.
  15. Tristen

    Tristen Senior Member

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    I think your right on there.....MTX takes several weeks to reach maximal effect. I would anticipate relief in that respect. Glad your tolerating the drugs well enough to continue...... Hoping to witness you making huge strides getting better. I feel you have a good shot at it.
     
    NK17 and Nielk like this.
  16. Nielk

    Nielk

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    Thank you. I really appreciate everyone's support here.
     
    Izola, MeSci, ukxmrv and 3 others like this.
  17. Nielk

    Nielk

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    I am writing this while rituximab is running through my veins. So far, everything is going well. I have no allergic reactions this time.

    Interestingly, I am feeling much better today, as opposed to yesterday. Yesterday I had one of my famous unbearable headaches. I couldn't get out of bed. I was pleasantly surprised this morning that the headache has eased off.

    As the IV started running, they gave me the pre-med of medrol. I'm not sure if it's because of that or just the saline solution which they run for a half hour before the Rituximab but I'm felling better than usual.
     
    Izola, MeSci, aimossy and 17 others like this.
  18. NK17

    NK17 Senior Member

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    Fingers double crossed for you Nielk ;).
     
    MeSci and Nielk like this.
  19. Nielk

    Nielk

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    I spoke too soon. (Of course )

    As I was finishing up, I started coughing again. I guess the Benadryl was wearing off.

    They told me to take more Benadryl when I get home and watch it carefully.

    I'm in my bed ) thank God!).

    I'm sure I'll be fine. I do t think they would have allowed me to leave if they were worried.
     
    leela, L'engle, vli and 2 others like this.
  20. NK17

    NK17 Senior Member

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    I hope you have someone to assist you at home and plenty of Benadryl Nielk!

    I also wish you a smooth post 2nd infusion ride.

    Next time the nurse should not 'skimp' on the antihistaminic ;), although it might not have been the case this time.

    You're strong and brave and deserve the best of the best out of this mAb treatment!
     
    justy and Nielk like this.

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