Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
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I was just approved for Rituximab!!!

Discussion in 'Rituximab: News and Research' started by Gingergrrl, Jun 9, 2017.

  1. adamtomlinson

    adamtomlinson

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    There is some possibility that taking Mirtazapine could provide some protection against potential PML. Its well tolerated by PWMEs and often used to help sleep and help with anxiety as well as helping some with POTS.
     
  2. Gingergrrl

    Gingergrrl Senior Member

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    I have never heard of this and was curious if you had a link re: how Mirtazepine could provide protection against PML? I am extremely hesitant to add any meds into the mix in addition to the Rituximab b/c I react so badly to things. I will be doing IV Benadryl as a pre-med for Ritux (and Solumedrol if I get an allergic reaction) which is another med that I have never tried but will not hesitate if severely allergic to Ritux.
     
  3. alex3619

    alex3619 Senior Member

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    This drug can easily kill me. Do be super careful on the first dose, have someone with you, and take a tiny bit off the low dosage tablet.

    When I took a tiny scraping off the side I passed out for four days. If that happened in summer I would die of dehydration. I was groggy for three or four days after that, and my tongue was numb.

    Most people probably do tolerate it well. I was planning to titrate my dose a bit at a time till I hit full dose, but the first dose was enough to convince me it was bad news. I tried a tiny crumb later on but again the effect was too much.
     
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  4. Gingergrrl

    Gingergrrl Senior Member

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    Thanks, Alex, and I will not be trying it but was just curious how it could protect against potential PML b/c I had never heard of that before. And I will definitely not be alone after Rituximab and will have family & friends with me.

    Wow, that sounds very scary! I have had some very strange and unexpected reactions to meds that others tolerate well so I totally relate. How I have tolerated a full year of high dose IVIG truly surprises me but it has gone very well. I am hoping Ritux will be the same but I know they are very different so I cannot really compare.
     
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  5. Alvin2

    Alvin2 Senior Member

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    I completely agree with your decision to not try it, its like throwing a monkey wrench into your brain and hoping it works out, some people like this sort of thing but i prefer less problems
     
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  6. Gingergrrl

    Gingergrrl Senior Member

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    Definitely and I will doing the first infusion of Ritux in eight days. I am not changing anything with my current protocol (not so much as a vitamin LOL) prior to Ritux b/c too risky IMO.
     
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  7. adamtomlinson

    adamtomlinson

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    http://jamanetwork.com/journals/jamaneurology/fullarticle/796502

    It antagonises the 5-HT receptor where the JCV virus enters the central nervous system. It is used by quite a few on here so plenty of information around. I am not recommending it per se, just thought it was of interest.

    Also would like to add that PML is very rare.
     
    Last edited: Jul 10, 2017
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  8. Gingergrrl

    Gingergrrl Senior Member

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    Thank you @adamtomlinson for the link and it looks like it refers to people who develop PML who are HIV+ prior to treatment (which I am not). But I need to read it more carefully.

    I know that PML is the biggest risk to trying Ritux (and pretty much fatal :nervous:) but my doctor has never seen a case of it and the nurses at my infusion center (which is actually a cancer center) where I have now done a full year of IVIG have never seen a case of it. Both my doctor and these nurses do Ritux very frequently.

    My understanding is that the biggest risk is if you are immunocompromised from HIV, other chemos, or other immunosuppressant meds/steroids (which I am not) and it is less of a risk if doing Ritux for autoimmunity like me. My doctor also ran a DNA test for the JC virus on me and I was negative (but was IgG positive meaning that I have been exposed to it at some point in my life like most of the population).

    I guess if I get PML, I will take the Mirtazapine but at that point... it's probably too late! I can't say I have no fear of PML but for whatever reason, the potential improvement in my quality of life, or even potential remission, is worth the risk to me. I did not always feel this way, but I do now.

    Thank you for the link and I have bookmarked it for the future and had never heard of it before!
     
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  9. adamtomlinson

    adamtomlinson

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    You are in the hands of professionals and I'm sure you will do well :)
     
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  10. Rowdy

    Rowdy

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    What is PML?
     
  11. Gingergrrl

    Gingergrrl Senior Member

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    Thank you and I really hope so! From your lips to God's ears :angel:
     
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  12. Gingergrrl

    Gingergrrl Senior Member

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    It is an abbreviation for "Progressive multifocal leukoencephalopathy" in which the JC (John Cunningham) Virus crosses the blood brain barrier and is usually fatal. It is a very rare side effect of meds like Ritux and when it occurs, it is usually in people who are HIV+, have multiple other chemos, or are immunocompromised for another reason. The chances of it happening are very small but not non-existent.
     
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  13. Londinium

    Londinium Senior Member

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    Agreed, the odds are fairly tiny, and seem to vary with what the patient is being treated for. This study, citing others states:

    However, Lupus patients seem to be more at risk compared to others. A presentation to a workshop on PML-drug interactions in 2011 says the risk for Rheumatoid Arthritis patients is much lower, at around 1 in 25,000 cases. It also notes that there is less evidence that Rituximab increases risk of PML when used as a monotherapy.

    We don't know whether ME/CFS patients would have a risk profile closer to that of SLE or RA, but in either case the risk is small and I would have thought tolerable for a prescribing authority to authorise for those with moderate to severe ME. And on a personal basis, I would take odds of between 1 in 4,000 and 1 in 25,000 if it had a roughly 60% chance of restoring function or full remission of my illness.
     
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  14. Gingergrrl

    Gingergrrl Senior Member

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    This is my understanding as well.

    The nurses at my infusion center, as well as my doctor, said the odds of PML are practically non-existent unless you are having other chemos (like R-CHOP), other immunosuppressant therapies, are HIV+, etc. As a mono-therapy, the odds are pretty small vs. with the MS med, Tysbari, they are much higher. In addition, I will be doing another five months of IVIG which will hopefully strengthen my immune system at the same time.

    I agree as well. As weird as it sounds, if this gives me a chance at full remission, I am willing to risk my life for it. I am in my mid- 40's, I have had a decent life, and I am okay with this. Believe me, I do not want to get PML or anaphylaxis or any number of things that could go wrong, but I have weighed the pros and cons and feel it is worth the risk and my family and closest friends all agree.
     
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  15. Gingergrrl

    Gingergrrl Senior Member

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    A lot of people have been asking me to update this thread (even though nothing has happened yet!) and my first Ritux infusion is in two days. I am getting more nervous about it but at the same time, I have no doubt that it is the right thing to do. One of my best friends from high school (who now lives in another state but we talk every week) sent me a text last night w/a million prayer hands emojis and said, "Your remission is on it's way". I am going into the infusion with this attitude, even though I have no idea what the outcome will be, and am trying to stay as positive as I can.
     
  16. dangermouse

    dangermouse Senior Member

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  17. antherder

    antherder a.k.a. Princess Dauer, Nematode Nation

    Will be thinking of you, @Gingergrrl, I hope the Ritux infusion goes as smoothly as possible! :hug:
     
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  18. Murph

    Murph :)

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    can't be long now! GOOD LUCK!!
     
  19. Gingergrrl

    Gingergrrl Senior Member

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    Thanks @dangermouse @antherder and @Murph for the good wishes and I leave for the infusion center in about an hour and scheduled to start around 8 am (PST). I will update this thread throughout the day from my phone and will be there about 10 hrs.
     
  20. Alvin2

    Alvin2 Senior Member

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    Very exciting :hug:
    Take your charger or a USB battery pack if you have one so you don't run out of power :)
     

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