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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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    Questions for anyone who has tried Rituximab/Mabthera

    Ginger- let me know how your doctors monitor the levels. I'd be interested in following mine. My rheumatologist is pretty willing to add on lab work to our usual stuff. That's great that you are a singer too. I sing better ( & with better breath control & volume / support) on days that I feel...
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    Questions for anyone who has tried Rituximab/Mabthera

    "Hi E, No worries about your delayed reply and best wishes with your company visiting." Thanks! "Thanks for clarifying and I was not sure if your insurance company dictated your schedule or if there was a clinical reason decided by your doctor. My situation will probably end up being a...
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    Questions for anyone who has tried Rituximab/Mabthera

    You are so welcome. I apologize for not getting back to you sooner. Just found out I've got company coming to stay and they leave the day before RTX. Been running around like crazy getting ready for company and RTX. Naturally, I overdid it. So, my insurance company dictated the schedule. They...
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    Questions for anyone who has tried Rituximab/Mabthera

    I'm on my tablet so same issue. (As a side note What I wouldn't give for your moist nasal passages! ) If you've done iv benadryl before and you're used to it then it should definitely be less of an issue for you. Out of curiosity what would you consider to be an excessive dose? One friend of...
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    Questions for anyone who has tried Rituximab/Mabthera

    One more thing I've thought of. I actually preferred Enbrel to Rituxan. I had superior energy and pain control from Enbrel. Plus it was much easier to take. Simponi also worked well. Both of those lost efficacy quickly though. It's hard to pull a flowers for algernon, but it is common. Losing...
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    Questions for anyone who has tried Rituximab/Mabthera

    Smart idea to hold off if you're holding your own. You know, the medical care in this state is exceptional. I am really pleased, so much so that I'm never planning on moving.
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    Questions for anyone who has tried Rituximab/Mabthera

    Ginger- no problem. Am curious why you said to stop antihistamines a week prior to IVIG? I have Sjogren's so I end up with intensely dry nasal & sinus passages anyway. If I take my allergy meds (OTC plus nasal spray in spring) on top of the 50mg of benadryl I end up with perfuse nose bleeds...
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    Questions for anyone who has tried Rituximab/Mabthera

    LOL, yes, but I've lived in a few western States so it's more like western US rep'n. There is no way I could do any $ up front thus the court battle for coverage. Plus, I only had a minor initial response - it's the repeated dosing that makes the real difference - one dose wouldn't necessarily...
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    Questions for anyone who has tried Rituximab/Mabthera

    Thanks, that's kind of you to say. I think most people here given the choice would do whatever it took to feel better. The ME/CFS population is incredibly brave - they soldier on day after day waiting, hoping and trying to regain what they've lost often with very little support or...
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    Questions for anyone who has tried Rituximab/Mabthera

    You are welcome. Prior to taking it I looked for as much info as I could find. I just wanted to be prepared as much as I could. There is not a whole lot of detailed patient accounts unless it's on chemo forums and many of those are RCHOP which adds a whole 'nother level to the RTX. Not a...
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    Questions for anyone who has tried Rituximab/Mabthera

    I'll answer it here. I'm sure others would be curious - I would be. I'm not here often and this account is linked to an old email address. so if I don't reply to further questions quickly please forgive me. (I think this is the first time in about 2 years I've been here?) Also, I'm on my...