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Rituxan Update

Discussion in 'Rituximab: News and Research' started by Rebecca2z, Feb 18, 2016.

  1. Rebecca2z

    Rebecca2z Paradise, Ca

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    I had a second round of RTX at the end of Dec and one on the 1st week of Jan. Again I had an excellent response to it. Took about 3 weeks to feel better. I may have felt better sooner but I had an infection in my picc line.

    I have realized the RTX seems to make all my autonomic complaints much much better. Second to that is improvements in my brain fog and 3rd the profound fatigue is improved. I am now off my feeding tube, which I credit to RTX, I have no appetite at all and have major motility issues when the RTX wears off .. Now I can take in a mostly liquid diet and I seem to be holding my own. My ability to sweat and have a blood pressure are better and all neuropathy in hands and feet has dramatically improved.
    As I said all autonomic problems have greatly improved and when the RTX wears off the problems come back.
    Hope this info helps someone somewhere ! :)
     
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  2. Hip

    Hip Senior Member

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    Wow that's a major all round improvement! Glad to hear that rituximab continues to work for you, @Rebecca2z.

    Interesting how your autonomic problems are also greatly improved. That suggests that these autonomic problems may also be autoimmune in nature.
     
    Hutan, Valentijn, Ecoclimber and 5 others like this.
  3. Rebecca2z

    Rebecca2z Paradise, Ca

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    @Hip - thank you for your kind words . I am so pleased with my improvements. Get this you guys I have booked a flight to go see my parents - who I haven't seen in 9 YEARS!! This is how much I have improved. I am a little scared about this trip as I am not perfect but I believe I can do it. I am a bit weak due to the dysmotility in my gut but with my strong determination I know I can do this. I do hate to come here and rave about my new health because i don't want to make others feel worse .

    I have other issues besides CDS/ME so you can't compare your situation with me or even others.
     
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  4. John Mac

    John Mac Senior Member

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    Absolutely no problem. Hearing of your improvement I'm sure will give us all hope.
     
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  5. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    I think we all have a vested interest in learning how your response to treatment progresses. Everyone wants to get better. Everyone wants to know the realities of RTX therapy for ME/CFS. I think everyone is greatly encouraged by your response to RTX therapy.

    Since one of the major concerns about using the drug is the increased risk of infection, can you tell us more about the infection in your PICC line? Was it a type of infection typical for PICC line sites? Was it any worse than such an infection would usually be? Did it respond to treatment as quickly as would have been expected?

    Thank you for sharing your news.

    Have a great trip!
     
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  6. Sidereal

    Sidereal Senior Member

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    I'm sure everyone here is delighted for you, Rebecca. Thanks for giving us an update of your progress.
     
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  7. *GG*

    *GG* Senior Member

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    So you were on a feeding tube due to no appetite and/or the motility issues of your digestion?

    GG
     
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  8. Rebecca2z

    Rebecca2z Paradise, Ca

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    Yes that is correct - I was on a feeding tube due to dysmotility on the entire GI tract. ( swallowing, digestion, and bowel) this dysmotility problem appeared about 4-5 years ago along with not being able to sweat, severe low BP, breathing issues ect . This failure of my autonomic system in my mind happened over night, one day I was fine and the next day I wasn't... Maybe not that black and white but close. The RTX once it kicked in gave me the feeling of hunger for the first time in years.. That was such a gift to wake up and say "whoa I AM HUNGRY" lol
     
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  9. Rebecca2z

    Rebecca2z Paradise, Ca

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    @Never Give Up , the picc line infection is pretty common, I had mine in for a year and a half- which is the longest my docs have ever seen. I also do IVIG, thus is key for me in not getting infections, I did have to go on antibiotics
    for this infection and I have not had any of those for over 10 years so maybe the RTX is the reason. My health has been very very poor and I have handled the RTX extremely well. That being said there are risks and you need a good team in place.
     
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  10. Gijs

    Gijs Senior Member

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    Great for you Rebecca! Did you also have POTS problems?
     
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  11. Rebecca2z

    Rebecca2z Paradise, Ca

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    @Gijs , I guess my autonomic issues are also called POTS , but Stanfird called it autonomic failure I believe - I had 4 hours of testing at the Stanford Neurology Lab - all test came back abnormal .
     
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  12. dannybex

    dannybex Senior Member

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    Can you refresh my foggy brain -- what are/were your other issues?

    Great to hear though you're doing so much better! :)
     
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  13. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    @Rebecca2z So great to hear from you and especially to hear that Ritux has kicked in for you again! Wonderful that you are planning a trip to see your parents. It is the ability (or even the notion of trying) to undertake such challenges that give us a real-life indication that things are getting better. :) :thumbsup:
     
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  14. Rebecca2z

    Rebecca2z Paradise, Ca

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    Hello @Sushi , always great to hear from you !!
    I agree my trip truly does indicate how much better I am doing. I am at Stanfird right now - going to see my Rituxan Doctor !! I think he will be pleased with my progress !! I am anxious to tell him about my changes..
     
  15. Rebecca2z

    Rebecca2z Paradise, Ca

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    Hi @dannybex - on top of my Cfs/me dx, I was dx 5 years ago with APECED, and discoid lupus. I was born with Ehlers Danlos.
    The life long struggles have been the CFS and EDS. The APECED I am not sure I even have because I don't have the DNA of it from both parents, so I believe that dx is not right.
     
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  16. CantThink

    CantThink Senior Member

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    Really good news! So happy for you. Wishing you a wonderful trip! :thumbsup::woot:
     
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  17. dannybex

    dannybex Senior Member

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    Thanks @Rebecca2z. I'd never heard of APECED or discoid lupus, had to look them up.

    Another weird question if you don't mind: Do you know if you had/have intestinal permeability?

    I ask because there seems to be a connection between leaky gut and autoimmune disease, and I wonder if those who respond well to Rituximab have had a diagnosis of intestinal permeability as well?
     
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  18. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Awesome!! Had been thinking of you after your last thread - wonderful to hear youre better again.
     
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  19. EtherSpin

    EtherSpin Senior Member

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    this is great to hear, please don't think that either good or bad news is something tainted to anyone here, its just information, good is encouraging, bad keeps expectations in check but all round its informative and means that rather than us imagining some far off treatment that might do nothing for us, might cause big problems, might make us really strong again etc we have some picture of what its like for people using the drug in 2015-2016
     
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  20. Rebecca2z

    Rebecca2z Paradise, Ca

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    @dannybex , my stomach issues is slow motility, it takes a long time for food to move through my stomach . But I think I read that Rituxan can help people with autoimmune stomach issues. My motility issues are being blamed on my Ehlers Danlos and auto immune .
    Here is info for those asking how my appointment went today;
    I just saw my immune Doctor and he is very pleased with my response to Rituxan - he is going to have me test B-cell and T-cell sub sets
    Monthly instead of every 3 months so that we catch when the B-cells return and I won't bottom out.
     
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