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    • #19663
      Ashley Gregory
      Keymaster

      In @lorildunham‘s most recent column she announced that her daughter Grace, who has LEMS, has been able to discontinue her monthly IVIG infusions after starting Rituxan infusions!

      I know this is exciting news for both Grace and Lori!

      Rituxan is a therapy we’ve talked about in the past as an option for us!

      For those of you who have tried Rituxan, were you recieveing IVIG in combination with Rituxan?

      Lori mentions that Grace did IVIG with Rituxan for a few months before transitioning off of IVIG, although this may not be the norm.

      For those of you who recieve Rituxan, were you able to transition off of IVIG like Grace?

      If so, how was the transition for you?

      Looking forward to hearing your experiences!

    • #19679
      Anngail Norris
      Participant

      I would like to provide information about Rituxan although I was not receiving IVIG infusions.  The Covid pandemic had just started at the same time I was diagnosed with LEMS. Not only was plasma hard to come by, but I was really leery about using any organic substances.

      In 2004, I was diagnosed with Lymphoma.  It was unusual because there was just a tumor in my lung. Rituxan was relatively new, having received FDA approval in 1997. Its uses were limited at the time.

      Fast forward to present day. Rituximab is used in many more instances and for many more diseases. When I was diagnosed with LEMS in 2020, my oncologist and my neurologist conferred and thought that since LEMS can be a precursor to Small Cell Lung Cancer that I could benefit from a round of Rituxan, even though I did not have SCLC. At the same time, I started taking Ruzurgi. So I’m not 100% sure which helped more, the Rituxan or the Ruzurgi

      In recent weeks I have been experiencing some weakness in my legs again and some mobility issues. I have an appointment with my oncologist in a few weeks and we will be discussing another round of Rituxan. It’s been 2 years since my last treatment. One of the benefits of Rituxan is that you can have it periodically.   I had infusions in 2004, 2006, 2016, and 2020.  The first 3 were for Lymphoma.  The last was for LEMS.

      I think anyone who is considering Rituxan should go for it. The only side effect I ever had was because you have to take Benadryl to avoid allergic reactions and that makes you/me really tired!

      • #19680
        Price Wooldridge
        Moderator

        @anngailn Thanks for recounting your experience with Rituxan for @ashleygregory757 and myself. At one point I considered it, but I’ve decided to put it on the back burner for now. My understanding, and I could be wrong, is that Rituxan is given about every 6 months, if it’s part of a prophylactic treatment plan. Perhaps someone else will agree or offer different scheduling. Of course anything you do will be a discussion and joint decision with your neurologist and healthcare team.

        For a very long time I took Benadryl as part of my pre-infusion preparations. It made me very groggy and sleepy too, as well as slowed my heart rate noticeably. After a discussion with my neurologist and dispensing Pharmacist, we decided to drop it from my pre-meds. I have a nice battle with allergies and already take a loratadine table most every day anyway, so I have coverage for a reaction.

        Since you report worsening condition I hope you will get with your neurologist and healthcare team soon. Good luck!

    • #19683
      Anngail Norris
      Participant

      I want to add something important to my previous post. Before transitioning to Rituxan, you need to be sure you are up-to-date on Covid vaccinations. Rituxan cam compromise the effectiveness of the Covid vaccine. You should have your latest vaccine at least two weeks prior to Rituxan infusions. I myself have had 3 shots of vaccine and my doctor wants me to have a 4th before more infusions.

    • #19696
      Ashley Gregory
      Keymaster

      Hey @anngailn

      Thanks so much for sharing your experience with us! I’m sorry you are experiencing leg weakness again, I hope you are able to get your next infusion soon!

      Like @Pricewool said, I have also heard that its usually given every six months, but its awesome that you were able to wait a couple of years between infusions!

      Thank you for the tip about COVID vaccines! I think the same goes for flu vaccines if you receive them too! I know I tried to time my vaccinations with my IVIG schedule because it is thought that IVIG decreases effectiveness too, however I am sure that IVIG at this point likely contains COVID antibodies. My rheumatologist is also recommending I get a 4th dose

       

    • #19790
      Anngail Norris
      Participant

      Here’s a brief follow up. I saw my oncologist today, and we are considering a new round of Rituxan. I have a few questions for those of you considering this also.
      Price, when you mentioned having an infusion every 6 months, was that because it was for LEMS?  The infusions I had were always a round of 4 spaced one week apart. If necessary it could be repeated in 6 months, but as I mentioned mine were in 2004, 2006, 2016, and 2020.
      Also, if you are still considering this, who would administer the infusions?  Do you have an oncologist or would your neurologist supervise the process?  It’s important that the procedure is handled by a doctor or infusion center that is familiar with administering the drug because there can be side effects, such as muscle spasms, chest pain, nausea and dizziness.
      Anyway, there is a lot of information online to help make an informed decision.

      • #19791
        Price Wooldridge
        Moderator

        @anngailn Currently I have no plans to try Rituxan. All I’m doing by infusions is immunoglobulin every 4 weeks for LEMS. I take two days to load a total of 90 grams.
        My LEMS is autoimmune in origin, so beyond early screeening, I’ve had no need of oncology, so my knowledge there is very limited.

    • #19810
      Ashley Gregory
      Keymaster

      Hey @anngailn

      When Rituxan is used specifically for LEMS treatment, it is given every six months. I’m not sure how often it is given for chemotherapy purposes, I would defer to your oncologist for that!

      If Rituxan is given for LEMS, I would think it would be prescribed by your neurologist or whomever treats your LEMS. If your oncologist is willing to take on that as treatment for LEMS, then I would allow him to because he/she may be used to side effects and such.

      I saw a hematologist in the past for some issues with my blood counts and we discussed my IVIG, he was unwilling to supervise this as it was a “neuro” problem, not a hematology problem.

      Hope this helps!

    • #19815
      Anngail Norris
      Participant

      Ashley,

      After my recent visit with my oncologist, I had a CT scan and my lymphoma appears to be stable although there is still evidence of the BALT (bronchial associated lymphatic tissue). Because of this, I am eligible insurance wise to undergo a round of Rituxan, which is administered once a week for 4 weeks. This will address both the Lymphoma and the LEMS. Fortunately, or unfortunately as the case may be, I have both an oncologist and a neurologist. They have been working together to determine my treatment. Rituxan is normally considered in the same category as chemotherapy, although it’s really not. So I can understand why a neurologist would not want to take responsibility for its supervision. I would assume that oncologists are more familiar with its use and possible side effects.

      • #19816
        Price Wooldridge
        Moderator

        @anngailn I know you’re in discussion with @ashleygregory757 on this, but I wanted to make a comment about specialists. I’ve had my neurologist defer to other specialists a couple of times, and I’m quite comfortable with that. I’m seeing a nephrologist for kidney concerns, even though IVIG (can be kidney stressing) is prescribed by my neurologist. She also deferred to orthopedics for some shoulder weakness. Some of my weakness is LEMS related, but we also found rotator cuff tears that required attention. I’m more confident in my neurologist, because she knows her specialty, neuromuscular neurology, but recognizes when I’m better served by seeing another specialist.

    • #19817
      Ashley Gregory
      Keymaster

      @anngailn

      It’s great to hear that your lymphoma is stable!

      It’s always nice when your specialists can work together to come up with a treatment plan! I hope the infusions go well for you! Keep us updated!

    • #19845
      Morgan
      Participant

      @ashleygregory757

      I had a televisit with my neurologist yesterday and if my labs turn out to be okay I will start Rituxan. He first mentioned CellCept but I had questions so he suggested Rituxan. Thankfully, I had read Lori’s column so I was a little familiar with it!

      The IVIG infusions are not as effective as they were in the beginning since my neurologist slowly lowered prednisone. My leg weakness and fatigue is back.

      I’ll continue IVIG for now and hopefully I’ll hear back from him soon with a plan.

    • #19846
      Ashley Gregory
      Keymaster

      Hey @morgan1028 !

      I’m hopeful that you will have better results with Rituxan. I’ll check back in with you to see how your labs turned out, or you can comment on this thread when you get results! or feel free to message me if you want privacy.

      I’m sorry IVIG is not as effective, I’m somewhat worried I’m starting to go down that path as well.

      Is your neuro going to taper you back up on prednisone while waiting?

       

    • #19849
      Morgan
      Participant

      Hi @ashleygregory757!

      Yes, my neurologist increased the prednisone to 25mg for 2 weeks then to 20mg. I was on 15mg before the increase but started out on 50mg in August 2021. I was on 50mg when I started IVIG and continued to do well while slowly weening until the last couple of infusions.

      I’m sorry to hear you may be having some of the same issues I am.

    • #19863
      Ashley Gregory
      Keymaster

      @morgan1028

      I’m glad he was able to increase! Have you found that the increase has helped you yet?

    • #19864
      Morgan
      Participant

      @ashleygregory757

       

      Yes, thankfully! It has only been two days on the increase but I think I am a little better. When I increased prednisone the first time in 2021 it worked fairly quickly.

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