Friday, April 20, 2012

Rituxan Reaction Continues

I am 3 days in to my Rituxan dosing and have yet to stop with the reactions. I have severe shortness of breath, rheumatoid pain and swelling in the hands, knees, and feet. My breath is so short, I am not able to speak on the phone in conversation. I had to draw a picture today of what I wanted at the store, because I could not "describe" it in speech without feeling like I was running in a marathon. Fortunately, Tom understood my drawing! I have been in contact with my doctor, she is aware and very supportive. I have promised her if I feel as if I need to go to ER, I will. We are trying benedryl for the next 72 hours. I am blogging and documenting this, so as to help others with Rituxan reactions and or treatment. I ask and ask those who have taken Rituxan, please share your experience. There is such a lack of information on this topic in RA world. I would really like to change that for the next person who has to take the medication. It is frustrating to feel alone in this medication treatment choice. I do know this, everything I have been able to read, has been positive. If I can just make it through these side effects, the potential of this medication truly helping has good possibilities for me. My next infusion is April 30. The doctor has already started planning to pre medicate me before I leave the house with benedryl, steroid, and Tylenol. So, once again, I ask... Please share your experiences. Thank you for your help... Kim

1 comment:

  1. Kim,

    I know you're discouraged with the side effects you are experiencing and they are certainly frustrating and concerning. I also know you're frustrated that you're not hearing back from the Rheum community on this one, but I want to encourage you with a few thoughts. First, while there are others who have taken the Rituxan there is not as many who are on the other "main" drugs like DMARDs or Biologics. Secondly, for those who have been on Rituxan they may not have experienced the side effects you are having. Also, it is a Friday night and there is a certain silence that takes place on Friday nights on social media. Finally, I'm not sure (this is just my opinion as I have no real life experience with this) that even if there were others that had the side effects that you are having that any suggestion they offer would be of more assistance than what your rheumy is doing. I don't say that to discourage you, but rather to point out that it appears you're in good hands with your rheumy. Many prayers your way that the side effects will stop and that the rituxan will work. Every blessing to you and Tom.

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