Wow, this process is so exhausting. I have been trying to write a letter , describing my situation, for weeks. I keep getting off track. I start on Rituxan next week. It took time to get funding approved. It costs 12,000 for initial doses. Ridiculous, if you ask me. But now that it is approved, it took another three weeks for clinic to schedule infusion. Clearly, they do not grasp how frightening it is for the patient. This drug stays in your body for six months. I have not had a great experience with all the drugs they have been giving me this year. The last one, Orencia, gave me Pityriasis Lynchnoids.

I refused to start Actemra, because of Diverticulosis and hypertension. The nurse tried to have me schedule it but I refused. My Rheumy then sent me to an Internist who refused to approve it without repeating the scope. Hence the switch to Rituxan. I review all data on drugs prior to taking them. This lovely toxin comes with infusion reaction but also a severe brain infection, which is lethal. My issue is the casual way with which they dispense these drugs without proper preparation. But this wait is making me think twice about going through with it. If anyone has experience with this drug , please tell me how it affected you.

2 Replies

  • Sorry, I can't help but I looked up Rituxan - side effects: severe brain infection, severe skin rash, etc.

    It sounds like a powerful drug. The doctors ARE casual about dispensing medication and I just get sick about it. All the side effects seem worse that the condition. Hope you can get some answers. and you're right about pausing to reconsider this drug. Caring doctors? Oh yeah, right.

  • We are really feeling for you Damaged, it can be so difficult when decisions are not made by a whole team at once and it can feel like you are passed on from expert to expert who are happy to prescribe without consulting you/each other.

    We do hope you find some relief soon - do have a look at our new exercise sheets: arthritisaction.org.uk/livi... for some useful stretches.

    All the best,

    Despina on behalf of the Arthritis Action Team

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