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Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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Planning to Start Rituxamab and Have Many?'s

Discussion in 'Rituximab: News and Research' started by sparklehoof, Oct 28, 2015.

  1. Two of my doctors have recommended Ritux (though neither administer it).
    I'm scheduled to meet with a hematologist in NY in few weeks. Since my other doctors felt confident that I qualify and that my insurance will cover it, I decided it was best for me to relocate to NYC temporarily to where all 3 of my dr's are. In order to have the Tx ASAP I needed to make a decision about renting a room so that I could find something safe and affordable in advance. I rented a room through AirBnB starting the first week of Nov- the 1st week in January.
    I'm a little scared that I won't be able to care for myself After reading some of the warnings and side effects online. I'm wondering if I may need to try to hire a nurse or some kind of aide? I'm only a little bit familiar with NYC and I believe I'll have about an an hour subway commute between where I'm staying and the doctors office. I also just learned that the room is in a 4-floor walk up and I may have to climb a ladder (about 6ft) to get to and from my bedroom...but it's in a safe area, 4 blocks from the subway and I'll be about 3 blocks from a grocery store.

    If anyone who has undergone the treatment could answer any of the following questions, that would be amazing:

    1. Do we know what the risk of fatality is for PWME I've read 2.5%-10.5% depending on a patient's diagnosis and other factors)

    2. If the highest risk of fatal infection is during the first 24hrs, did you stay overnight wherever your treatment was administered?

    3. I read some of the contraindications include Herpes and Parvovirus. Has anyone here been treated who has one or both? ( I have past infection of Parvo and HHV6, but my 1st two dr's didn't mention that it was a problem.)

    4. What were your side affects like and what are the chances that one I could become a lot worse temporarily or permanently?

    4. What was your treatment schedule like? How frequently did you have the infusions, how long do they take? How often did you have follow up doctor's visits? (I've read it's usually given in two doses 2 wks apart, but I was told that my doctor uses 4 weekly doses. My rheumatologist said he would like to see me after 2wks)

    5. How often are courses usually repeated? (Every 6-12 months?)

    6. Was it recommended that you have the flu vaccine at least 1 month before?

    Thank you ME community!
     
  2. Martial

    Martial Senior Member

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    @Rebecca2z can probably answer a few of these questions!
     
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  3. msf

    msf Senior Member

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    I´m pretty sure the risk of death is not anywhere near that - if it was, we would already have heard the horror stories.

    This article states that the incidence of serious infusion reaction was less than 1 % in both the treatment and the placebo group.

    http://dailymed.nlm.nih.gov/dailymed/archives/fdaDrugInfo.cfm?archiveid=4952

    This was for Ritux in RA - I doubt there are any figures for ME yet
     
    Last edited: Oct 28, 2015
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  4. msf

    msf Senior Member

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    It´s actually a pretty informative article, particularly the part from Adverse Reactions for Patients with Rheumatoid Arthritis down.
     
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  5. Riley

    Riley Senior Member

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    Are your doctors recommending Rituximab for CFS or another issue?
     
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  6. deleder2k

    deleder2k Senior Member

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    1. As far as I know one the fatality rate is 0%. No one with PWME has died after Rituximab.

    2. I don't think there is a risk of a fatal infection within the first 24 hours. There is a risk of an allergic reaction. If it occurs it will probably happen within an hour or two. You probably won't have to stay the night.

    4. And 5. Regular infusion schedule according to Haukeland is one at day 0, then day 14. then after 3, 6, 9 and 12 months.
     
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  7. Thanks- I'll try to reach out to her.
     
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  8. Thanks for your reply. Have you received Retuximab tx personally?
     
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  9. My ME doc is recommending it for ME and my rheumatologist is recommending it for RA
     
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  10. Thank you- these results are nowhere near as scary as the others that I read.
     
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  11. IreneF

    IreneF Senior Member

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    I had ritux and my only reaction was a fever the night after the first infusion. I was tired after each infusion, partly because they give you IV benadryl, which makes me extremely sleepy. Otherwise no problems at all.
     
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  12. @ Irene thanks for your response. If you don't mind sharing where did you have your treatment done and what was your dosing schedule like? I just learned from Jonathan Edwards how important it is that a particular protocol be followed for autoimmune diseases. Thanks
     
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  13. IreneF

    IreneF Senior Member

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    I had the infusions at Open Medicine in Mountain View, CA. The first two were two weeks apart, then they spread out, but I don't recall the exact schedule.
     
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  14. Do you mind sharing your dr's name?
     
  15. knackers323

    knackers323 Senior Member

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    what tests are done to show that you have a problem with B cells or that a patient is likely to be a responder?
     
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  16. BurnA

    BurnA Senior Member

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    That is what a lot of smart people are trying to figure out !
     
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  17. Thomas

    Thomas Senior Member

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    @sparklehoof if you don't mind me asking, do you have a confirmed diagnosis of RA on top of your ME? Also who is your ME Doctor that has recommended Rituximab for you? You mentioned all your doctors are in NY so I'm guessing Enlander or Levigne but I could be wrong.
     
  18. Hi,
    Re: a dx, it's tough to say if I have a confirmed one- it seems to depend on which dr. I see. My rheumatologist recommended RTX. I have seen Dr. Enlander 2 years ago, but did not respond well to his protocol. I began seeing Dr. Levine in Aug, but haven't started any treatments with her yet.
     
  19. jimells

    jimells Senior Member

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    @sparklehoof I hope you will pardon my boldness, but I can't help thinking you may find a fourth-floor walkup, followed by climbing a ladder, will be difficult to deal with, especially after an hour on the subway.

    Please know that there will be many folks here to cheer you on as you go through this treatment. And wishing you well.
     
    L'engle likes this.
  20. @jimells thanks for your note and support. I canceled my plans to move to NY on Fri.. I was feeling too scared.
     
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