Mar 25, 2013 (Started Mar 15, 2006)

  • Effectiveness
    Major (for systemic lupus erythematosus)
  • Effectiveness
    Major (for rheumatoid arthritis)
  • Side effects
    Moderate (for Overall) (nausea, migraine)
  • Adherence
    Usually
  • Burden
    Somewhat hard to take
Dosage: As needed
Advice & Tips: I use the Scopalamine Patch the night before (helps eliminate the nausea - I have tried Phenergan and Zofran -both used to work, but don't any more). Occasionally I have side effects during the drip (itchiness in throat, ears and head - now they add tagamet and claritin to stop that - last infusion it worked well). Retuxan has changed my life - I was unable to work before i was on it- after the first infusion about 1 month later I went to EUROPE for a week (I never could have gone before!) and I walked, went to Paris, London, had a blast! Prior to retuxan I had stopped working completely and spend most of my life in bed. I had researched this drug and was waiting for for the FDA to approve. As soon as it did my doc got approval ( had been on EVERYTHING prior to that) and had a needle in my arm! I was the second patient to receive treatment at my clinic! It is a godsend! I'm not "normal" but I am a LOT better (I can tell when I can't afford it- it is pricey but the company has started a program to help you pay for what insurance wont (it's apprx 7-20,000 per infusion)So with a copay or if you get it early in the year you owe all of your out of pocked and deductible (3K for me!). It is an all day infusion (about 6 hours) and bc of problems years ago with an insurance company that paid for it, then when we moved to a different insurance company they went back and "retroactively denied treatment" I fought but still owed the clinic $8000 which I did NOT have on hand. They have told me I can NEVER get infused at their clinic (which is a problem bc many clinics are with hospitals and they won't let me get infusioned if my doc doesn't have privs, or the hospitals want the doctor to get approval and her office refuses since they aren't getting paid. SO..advice - even if your doctor says you are approved CALL INSURANCE find out how much you will owe. Once it's in your arm you could owe a lot of money. AND some clinics don't actually get authorization (then they will charge you a LARGE fee - your insurance). BUT apart from the cost (LOL) it is brilliant! OH - the typical dose is 2 infusions 2 weeks apart every 4 months (that is NOT ON THE LIST OF CHOICES). You can get it more frequently (and I did once) but you need to get approval from your insurance.

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