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New Rituxan blog

Discussion in 'Rituximab: News and Research' started by dsdmom, Aug 18, 2012.

  1. dsdmom

    dsdmom Senior Member

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    I started Rituxan this week and have started a blog about my experience.
    http://rituxanforme.blogspot.com/

    I've included a background blog as well which shows up on the bottom of that page.
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    are u able to keep it updated here.

    cheers!!!
  3. lnester7

    lnester7 Seven

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    Where are you getting the treatment?
  4. dsdmom

    dsdmom Senior Member

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    Hi lnester7 - at this point I am not comfortable sharing that information publicly.
  5. lnester7

    lnester7 Seven

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    I understand, I am just wondering where and how we can get access to this treatment.
  6. ThatBloke

    ThatBloke

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    Thanks for sharing your experience. Looking forward to following it.
  7. justy

    justy Senior Member

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    Hi, thanks for sharing the link to your blog - i look forward to following your progress and wish you all the best with the treatment.

    In your background i noticed it said you developed problems after complications from childbirth - i wonder if you would mind sharing what kind of issues you had and wehter anyone has investigated the link?

    Take care, Justy.x
  8. dsdmom

    dsdmom Senior Member

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    Justy, my postpartum experience absolutely was the cause of my illness. It involved several life threatening hemorrhages, surgeries, transfusions, infections & a 3 months hospital stay. My body never had a chance to recover.

    I've also just updated the blog with thoughts on my first week.
    redrachel76 and ukxmrv like this.
  9. ukxmrv

    ukxmrv Senior Member

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    Thanks dsdmom. It sounds like it's hard to spilt up the reactions to the steroids and the reaction to the ritux.

    Very good for you to write such a comprehensive desription under the circumstances. It really helps us now and in the future to know what it feels like.
  10. dsdmom

    dsdmom Senior Member

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    Thanks ukxmrv. I know it is very hard to tease out what is what but I hope my reports can be helpful in someway. But maybe it will all be in hindsight down the road and it will be good to have something to look back on!
    Little Bluestem and ukxmrv like this.
  11. justy

    justy Senior Member

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    Hi dsdmom, thanks for replying, i was wondering if you had experienced a severe haemorrhage, and wether they had considered Sheehans syndrome?
    I have had two post partum haemorrhages and my M.E doc thinks i could have mild Sheehans syndrome (dysfunction of the pituitary brought on by trauma or PPH) I did manage to breastfeed, so i cant get an edocrinologist to take it seriously enough to scan my pituitary. The treatment is lifelong hormone and steroid replacement. I had to take steroids for a long while for lung condition and it really wrecked my immune system for a good few years, so they are no help in the long run.
    Some people with Sheehans can have Addison style reactions to stress, surgery etc and my latest 4 year relapse cam after a severe infection and then minor surgery.
    Sheehans can show up immediately or many years later.

    Thanks for the blog update - i will try and keep up with it.
    Take care, Justy x
    merylg and taniaaust1 like this.
  12. Carola

    Carola

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    dsdmom,
    Thank you so much for blogging about your experience.
  13. dsdmom

    dsdmom Senior Member

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    Quick update that I have yet to receive my second dose of rituxan. Have run into a few issues along the way but hopefully we can reschedule soon. Full update at http://rituxanforme.blogspot.com
  14. ukxmrv

    ukxmrv Senior Member

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    Thank you for writing such a great blog. I just wish that there were not these painful reactions to treatment for you. Looked again today to see if there was an update and yes, there is one from Thursday 13th. Sounds like you are dealing with the complications of the complications now. Adds insult to injury when this happens.

    Just wanted you to know that I was thinking of you.
  15. justy

    justy Senior Member

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    Me also, thanks for the blog posts, sorry your having such a rough time. I also have gastritis and have been waiting for over two months to be referred for an endoscopy. It's interesting the reactions you had to the PPI's - i had similar at first but stuck with omeprazole (not sure what that is in the US) and eventually the side effects lessened and have almost gone completely, i'm now on 2x day and at first the fatigue and dizziness where horrible. I do hope you find relief from all these problems soon.
    Take care, Justy
  16. ukxmrv

    ukxmrv Senior Member

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    New update

    (quote)
    Rituxan update: I met with my cfs dr yesterday and we decided to go ahead with round two. Although the gastritis was probably brought about by steroids and NSAIDs we think the scales may have been tipped by rituxan. So it is unknown if this will happen again but I'm praying it doesn't. I am scheduled for next Tuesday am
    (end)

    Wishing you all the very best for round 2
    dsdmom likes this.
  17. justy

    justy Senior Member

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    Yes, good luck!
    dsdmom likes this.
  18. dsdmom

    dsdmom Senior Member

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  19. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    dsdmom,

    You are a hero for writing this up while going through such a hard time. I'm glad all your tests were pretty much OK, but still...so hard!

    I hope these symptoms subside soon and you have some better times before your next infusion.

    Thinking of you, :hug:
    Sushi
    dsdmom likes this.
  20. Ema

    Ema Senior Member

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    Hang in there dsdmom! I hope you feel better soon...and thanks for the update. Ema
    ukxmrv and dsdmom like this.

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