1. Community
  2. Ears, nose, throat and mouth
  3. Granulomatosis with Polyangiitis

Is Rituxin Working?

Posted , 4 users are following.

elizabeth13805
elizabeth13805

Hi,

I was diagnosed with Wegners early April. I have just completed my 2nd Rituxin infusion on Dec 5th. I was previously on methotrexate 20 mg and prednisone 15 mg but my doc felt i was only being partially treated due to more nodules appearing in my lungs. I was told by the doc that rituxin takes 3 mths to kick in where upu actually feel a difference but that it should be working on the inflammation in my lungs by now. When i went to do followup bloodwork on Dec 18th my c reactive protein was 9.1 the highest its ever been i was started on meds. My doc told me not to worry that tjis is a minimal increase in CRA and does not think it is the result of vasculitis. I just thought that if the rituxin has started to work on the inflammation as per my doc my CRA should be lower...just worried the rituxin is not working.

0 likes, 4 replies

4 Replies

  • jac08
    jac08 elizabeth13805

    Posted

    I was dx’d in Aug 16 and spent 31 days in the hospital, on the vent twice...plasmapharesis and started on Rituxin.  Have been receiving infusions every 4 months since that time.  My CRP has been in a normal range for a while, but just yesterday I learned that my ANCA is normal for the first time since my dx.  I do think it takes some time for Rituxin to work and depending on the activity of the disease when you were dx’d, it could take a while.  It’s been a year and a half for me.  Hang in there!   
    • elizabeth13805
      elizabeth13805 jac08

      Posted

      Hi,

      How soon after your last infusion did you do bloods? Was your crp normal right away or did that take time to go down as well? How long before the rituxin kicked in for you and you actually felt different? I guess i am worried cause i am also on a low dose of pred 5mg just dont want to flare again.

  • eileen49269
    eileen49269 elizabeth13805

    Posted

    I was dx'd in Dec '16 with Wegener's and apparently my numbers were extremely high. They had me on 120 mg of prednisone and did an infusion a week for four weeks of Rituxan in Jan. Numbers improved quite a bit but still positive. Started methotrexate and waited 6 months for another infusion. Did two more Rituxan infusions and the blood test results about three weeks after the last infusion showed that I was negative for  the first time. My doctors were trying to get me off the prednisone completely because of severe nausea and other stomach problems but at 2.5 mg, my inflammation numbers were back up and my joints were swollen. We're now increasing the dosage by .5 mg at a time to see the lowest amount I can be on without inflammation problems. Increasing the methotrexate could possibly help with that but anything over 10 mg has a bad effect on my liver. I'm also giving myself two injections of Acthar every week to try to reduce the amount of prednisone that I need. 

    So it took two rounds for me but the Rituxan finally did help me. The plan is for me to have two infusions every year from now on assuming my numbers stay negative.

    Good luck to you! 

     

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community 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 community 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.