Search Discussions

Main Content

  • hope2015

    ?s, I do check with drs, Splists,on meds but I would appreciate MSers opinions.

    1. On rituximab (3rd infusion) 6mos 8mos 10mos (felt 8mos should be limit) Anyone else on rituximab, how long and whats next? Anyone taking LDN and rituximab?

    2) blood test showed no longer immune to Hep A or B (and liver enzymes slightly elevated) so after seeing gastro dr, he told me maybe taking too much vit D (on 4000 IU at least a year ) so I went to a daily vitamin.  Had a HepAB shot (only A took) on his suggestion,respectfully declined B shot again as it wouid put off infusion 2 more months and I was starting to degress so I chose no(married 29yrs to HS sweetheart, it's really not a concern.) Drinking not an issue. I feel I should go back to 4000IU of vit D. He's a good gastro but he wasn't aware Vit D Benefits for MS?

    3) Didn't someone post awhile ago that they used and found a powerplate helpful as exercise?

    I see my MS Dr end of the month and would appreciate feedback so I could be more informed.  

    I know everyone is different. I value Your opinion on 1 2 or 3 . Thanks and I know it's alot lol. I just feel I should have had the infusion earlier, never had the vaccine, go back to VIT D routine and just checking out the PPlate.

  • michele712011

    i have not had experience with Rituxmab, but my vitamin D level was a 9 my last test my Dr. put me an 50,00 once a week above my daily dose of 5,000 a day. I also take b-12 and iron daily. i was diagnosed with RRMS i am trying to pick one of 3 meds he wants to to try.... I am afraid of  them all. Sorry not much to contribute :) Goodluck

  • hope2015

    Thanks!  Vit D info helpful. I know switching meds could be overwhelming been on 4 different ones. You have three choices, research them and talk to your doctor about it. Good luck in choosing.

  • hope2015
    Hi Michele,

    I've been using Rituximab for many years, probably 6yrs or longer. I actually go next week so I'll verify. I take 5000 IU Vit D3 almost every day. No I dont have exp using a power plate but I always thought it would be great to use.

    Fyi started out on rebif..betaseron..avonex..Tysabri (was jc virus+ so I wanted off) should have been weened off though..caused a bad relapse. I now take rituximab infusion every 6 mos and ampyra. I am so grateful to have a wonderful team of MS DRs NPs. PT was a blessing I didnt think I needed either but how helpful.   slow and steady is my life and thats ok with me

    Side note: Eating healthy and cutting out sugar has had a major impact on my ms life..and a ton of water. Rituximab made the quality of my life so worth it. 
    I hope any of this I see I answered this question some yrs ago lol
  • hks1112

    I started taking Rixtuximab last October/November, and had my repeat dose in May. I absolutely hate it, and want to switch back to Tysabri, but my neurologist is very concerned about my high index value of the JC Virus. There's about a 1/128 chance of me developing PML, but I honestly don't care at this moment, because I feel like quality is greater than quantity. I'm in a rut, so to speak, because I've tried all of the drugs prescribed for MS.

    I take 4,000 IU of Vitamin D on a daily basis and my Vitamin D level is in its 50s or whatever, so not too bad.

    How are you liking the Rituximab, if you're still on it?