Rhituximab

Posted , 7 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

How many are familiar with this treatment? Do you recommend it? Long and short term side effects?

0 likes, 10 replies

Report

10 Replies

  • Posted

    Hi Dog

    Had Retixumab infusion at Addenbrookes last week. After month of feeling rubbish, the day after the infusion I felt just great! No down sides as far as I can tell - have now had 3 infusions

    D

    Report
  • Posted

    I had 4 infusions in 4 weeks in August. They pre med you before you start (Benadryl & some other stuff I don't remember) so you don't have a reaction. The infusion takes a couple hours and the dose you slowly during your first infusion. I stayed awake during the 1st couple and watched Netflix on my iPad. The last 2 I ended up taking a nap.

    As for the side effects, I felt like sh*t for a couple days. I was infused on Fridays and by Monday was feeling better. After my last infusion I went back to work on the next Monday.

    I was in and out of the hospital for about a month before they diagnosed me with gpa and didn't start feeling better until they put me on prednisone and then retuxin. It took me a couple months to get back feeling somewhat normal.

    I took a CT scan of my lungs and the inflammation I had went down but is still there. The doctors are leaning toward giving me another round of retuxin in a couple months.

    I'm not sure what long term effects are from it. My ankles swell up from time to time and occasionally I get migraines. Not sure if that's from the prednisone or from the gpa or what.

    I did eat some weed edibles the days after infusions and it did help from not feeling like complete sh*t.

    Good luck with whatever your going through and hopefully I was helpful

    Report
    • Posted

      Weed edibles? I had my 4 treatments finished Feb 2nd still very fatigued but sleep broken up and never sleep well on prednisone. Glad your doing and you were able to go back to work so quickly
      Report
  • Posted

    Hi there. I have just started my rituxan treatments. I have had two since October and feel great. The 1st one didn't go so well but the 2nd I felt like a new person a couple days later. So far really no side effects yet. I hope others can help that have had more of experience with this. Good luck.

    Report
  • Posted

    I've been on it since 4/14 it is relatively a new drug recently approved by the FDA. Some side effects are nausea, fatigue, dizziness but as stated by a Dr working on a study of wegeners it is a agressive treatment and one he would use it for a member of his own family. That being said i've enjoyed the benefits ofRhituximab and only had 1 bad episode that quickly passed. I was told that i will be one treatment a year for the next ten years. My rhuemotologist from Yale said this really is the only known, recommended plan for long term maintenance unless new data comes along- good luck i hope this info has been helpful
    Report
  • Posted

    I have had 2 infusions (that's all that's recommended in my case) and no side effects except feeling better! I can breathe again smile 
    Report
  • Posted

    Was on it for 2 yrs, did absolutely nothing for me ,but may work for you, but don't put too much hope in it.
    Report
    • Posted

      I dont notice much difference at all. Getting concerned and not well enough to go back to work yet
      Report

Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up