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    Relapse After Rituximab

    Hi Everyone,

    Can anyone on Rituximab tell me if they experienced a relapse after the initial dosing period? I received two 1000 mg doses in November. A couple weeks later, I developed a completely numb left hand with tingling, and burning. My other symptoms include vertigo and thunderclap headaches with exertion. The holidays interfered with getting this assessed or treated but I was able to communicate by email with my medical team.

    My neurologist feels this is likely another "attack" or relapse. I will undergo brain and full spine imaging this week. I am so disappointed that this is happening, even though I was told that it could take several months for the Rituxin to calm the inflammation in my CNS. I want remain hopeful that Rituximab will be as effective as all my doctors seem to think it will. I would love to avoid another round of IV steroids but this hand issue is making my recent return to work difficult.

    Thanks and Happy New Year to all of you

    #2
    Originally posted by polopuppy View Post
    Hi Everyone,

    Can anyone on Rituximab tell me if they experienced a relapse after the initial dosing period? I received two 1000 mg doses in November. A couple weeks later, I developed a completely numb left hand with tingling, and burning. My other symptoms include vertigo and thunderclap headaches with exertion. The holidays interfered with getting this assessed or treated but I was able to communicate by email with my medical team.

    My neurologist feels this is likely another "attack" or relapse. I will undergo brain and full spine imaging this week. I am so disappointed that this is happening, even though I was told that it could take several months for the Rituxin to calm the inflammation in my CNS. I want remain hopeful that Rituximab will be as effective as all my doctors seem to think it will. I would love to avoid another round of IV steroids but this hand issue is making my recent return to work difficult.

    Thanks and Happy New Year to all of you
    Sorry to hear about your troubles. Hope you get to feeling better soon.
    The future depends on what you do today.- Gandhi

    Comment


      #3
      I am so sorry that you are in a possible flare up. That is always so unnerving.


      It takes a while for a new medication to become effective. On the longer range is Copaxone that takes the bulk of a year to become fully effective. If memory serves, it initially takes Rituximab roughly 50 days to become fully effective. After that dosing should be enough to maintain it's effectiveness.

      I have been on rituximab for a couple of years and I am very happy with it. I hope it serves you as well as it has me. Please keep us updated about your situation.

      I wish you well...

      Comment


        #4
        Thank you Boudreaux and Marco for taking the time to respond.

        I am glad to hear that Rituximab has been working well for you, Marco. My plan is to remain positive and hopeful that it is going to work for me, too. It has been almost 50 days since my first infusion so maybe the real magic will start to happen soon. I'm waiting for insurance approval to get the MRI scheduled and then we will see if something new is going on in my brain or spine. I have had lesions in so many different parts of the CNS this year, that it has been rather scary. In the past, the lesions were always in the brain stem, Internal Capsule or periventricular region. I will keep you posted.

        Comment


          #5
          Hi polopuppy

          Hopefully the numbness, tingling, and burning sensations in your hand is subsiding and resolves soon!

          Originally posted by polopuppy View Post
          My plan is to remain positive and hopeful that it is going to work for me, too. It has been almost 50 days since my first infusion so maybe the real magic will start to happen soon.
          You have a great attitude.

          Good luck polopuppy!

          Take Care
          PPMS for 22 years (dx 1998)
          ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

          Comment


            #6
            Hi Polopuppy

            Hopefully Iím late enough in commenting that you donít need reassurance, but just in case...

            Iíve been on Rituximab for 2 years. I got my first infusion coming off a terrible Gilenya washout. Vertigo and weakness so bad I couldnít walk. And the one week before my 6 month infusion, I was in the same state again. ( I received only one dose initially, not the usual two, so I suspect that I may have regenerated some B cells. Dr. ran blood work but didnít check that... stay w/UCFS over Stanford )

            But, after that, itís been great. I still have to not overexert and all the usual stuff but I feel so much better than on Tysabri or Gilenya. It took about 9 months for me to really see dramatic improvement. And the MRIs look good so far....

            Comment


              #7
              Thanks Koko for your encouraging words and best wishes. My symptoms have not abated but I think the hand numbness is less intense. Mind you, it did start about a month ago so maybe things are calming down on their own. My MRI's will be next Friday, after a bunch of issues with getting it ordered, scheduled and approved by my insurance. Now I am second guessing whether I should even go through with it.

              I will update once get the results.

              Comment


                #8
                Hi Emily,

                Thanks for your reply. I will take all the reassurance and hope I can get. My neurologist warned me last week that it was not uncommon for relapses to occur the first 3 months, after starting Rituximab and that it usually takes a good 6 months to kick in. I will have brain and spine imaging next Friday so I will hope for the best.

                I definitely plan on staying with my UCSF neurologist. I do see a headache specialist and a sleep medicine/dysautonomia neurologist at Stanford. My cardiologist, hematologist, ENT, Neuro-Endocrinologist and nephrologist are also at Stanford. I only see neurology, rheumatology and immunology at UCSF. My neuro-opthalmologist is at PAMF but transferred from UCSF.

                I really like my UCSF neurologist but I haven't been entirely happy with the MS Clinic so far. The biggest problem is that they have no after hours or weekend coverage at all. I find that so strange, because Stanford and PAMF do. It means that when I have a new symptom that is worrisome, I have to wait for the clinic to be open, go to Urgent Care or an ER. Oh, well. I can't have everything.

                Have a good weekend.

                Comment


                  #9
                  Quick update: I had my brain and spine imaging Friday evening. My neurologist messaged me yesterday and said that the MRI looked great. I have no active brain or spine lesions for the first time in 14 months. He also said that the active lesions with enhancement and edema have healed.

                  I should be thrilled but neurologically, I don't feel as good as my MRI seems to indicate I should. My left hand is still numb and tingly. My swallowing has worsened and I keep aspirating food. The thunderclap headaches and vertigo persist. Hopefully, my body gets the message and starts to cooperate! Overall, it seems the Rituximab is working and that we will proceed with my next 2 doses in May.

                  Thanks and have a great day!

                  Comment


                    #10
                    Originally posted by polopuppy View Post
                    Quick update: I had my brain and spine imaging Friday evening. My neurologist messaged me yesterday and said that the MRI looked great. I have no active brain or spine lesions for the first time in 14 months. He also said that the active lesions with enhancement and edema have healed.

                    I should be thrilled but neurologically, I don't feel as good as my MRI seems to indicate I should. My left hand is still numb and tingly. My swallowing has worsened and I keep aspirating food. The thunderclap headaches and vertigo persist. Hopefully, my body gets the message and starts to cooperate! Overall, it seems the Rituximab is working and that we will proceed with my next 2 doses in May.

                    Thanks and have a great day!
                    Thank you for the update, polopuppy.

                    Glad to know that you had a good report.

                    Hope you see improvements soon, and that the headaches and vertigo subside.

                    Keep us informed with how you're doing.

                    Take Care
                    PPMS for 22 years (dx 1998)
                    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                    Comment


                      #11
                      Originally posted by polopuppy View Post
                      Overall, it seems the Rituximab is working and that we will proceed with my next 2 doses in May.
                      I'm glad you received good news from an imaging standpoint. Rituximab also stabilized my MS and has kept it that way.

                      I'm sorry that other symptoms have remained or gotten worse. Have you been evaluated for the other items? They may not be related to MS at all, but hopefully they subside soon.

                      Thank you for the update.

                      I wish you well....

                      In May you will probably only get one dose.

                      Comment


                        #12
                        Thanks, Koko for your response. I hope things start to get better soon, too.

                        Thanks, Marco. I have been evaluated for these other symptoms. Most of them are not new and I have at them at different times in the past. I had brain stem lesions in 2005 that caused the dysphagia. I always have to be careful when swallowing certain things but at times, the dysphagia worsens dramatically.

                        The left hand numbness/weakness was assessed and found not to be from a pinched nerve or carpal tunnel. It is definitely neurological and originating in the CNS, per my neuro.

                        The thunderclap headaches have been associated with new lesions for me in the past so that is why I was so certain that there was something new going on. These symptoms started up a couple weeks before Christmas so the imaging didn't occur until many weeks after. Maybe there was something new that has subsequently healed up. I guess we will never know.

                        My optic neuritis has not had a good recovery either. I saw my neuro-opthalmologist 2 weeks ago and there has only been 17% improvement and he said that he would have expected 75% by now. Both my visual field and acuity are affected.

                        That would be great if I only need one dose of Rituximab in May but I am very certain he told that it would be 2. Each dose took over 11 hours to infuse and I was having reactions left and right. One infusion day would be much simpler and easier to fit into my work schedule.

                        I'll keep you posted on any interesting changes, good or bad. Keeping my fingers crossed for only good things, moving forward.

                        Thanks!

                        Comment


                          #13
                          Originally posted by polopuppy View Post
                          That would be great if I only need one dose of Rituximab in May but I am very certain he told that it would be 2. Each dose took over 11 hours to infuse and I was having reactions left and right. One infusion day would be much simpler and easier to fit into my work schedule.
                          Here's a link to reduce infusion reactions for ocrelizumab, but it should also apply to rituximab:

                          https://multiplesclerosisnewstoday.c...study-reports/

                          Comment


                            #14
                            Hi Marco,

                            Thanks for the great link. I am on the identical protocol for pre-medication. It was the same one I used while on IVIG. I just seem to be a very reactive person. I think the key to reducing my reactions is to repeat the pre-meds every 4 hours while the infusion is going. It seems they do a great job of getting me pre-medicated and then we hit the 4th or 5th hour of the infusion and bingo...... I have a reaction. The plan for the next infusions will be to be pro-active rather than reactive. Going slow and steady is also critical with me.

                            Best, Polopuppy

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