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  • Anyone with experience with Rituximab infusions?

    Posted by Larry Slack on December 9, 2022 at 11:01 pm

    I was diagnosed with MG over 6 years ago and have gone through the standard protocols of Mestinon, Prednisone, IVIG, and Cellcept.  My MG is manageable, but I’m having a lot of fatigue.  Neuro has suggested Rituximab infusions, consisting on one session followed by second in 2 weeks, and then follow ons at 6 months.  Does anyone have experience with Rituximab, benefits gains, side effects, time to improvement, etc. Thanks in advance.

    Connie replied 1 year, 4 months ago 13 Members · 13 Replies
  • 13 Replies
  • michail

    Member
    December 15, 2022 at 12:57 pm

    I am using Rituxumab.  I had problems with all other immunosupressors (azathioprine (gave me hepatitis), micofenolato mofetil (barely manageable, head aches and many other neurological side effects), tacrolimus (after 6th tablet I was completely out). So Rituximab was the last opportunity.  Seems to be working, although one can not be 100 % sure.  I am using 20 mg prednisone + Rituximab for a year now; I was not able to reduce prednisone, but overall, I am doing things which I was not able to do 1 year ago, like getting a glider pilot’s licence, flying for hours, driving for hours, walking 4-6 km on flat terrain, slow hiking (climbing mayve 400 meters), etc.

    Rituximab has very few side effects for me.  The first infusion was rather scary, because I got very high blood pressure (up to 200), and the dose was 1000 mg.  In hind sight, it should have been split in two (Initial idea was to do 1000 mg followed by another 1000 mg two weeks later, and then maintenance dose every 6 months).

    As it turned out, it was 1000 mg followed by 500 mg after 6.5 months, followed by another 500 mg 5.5 month later.  I had the feeling that the third dose was too late, and I am planning to repeat 500 mg every 4 months from now on.

    Long term effects were actually beneficial: it lowers slightly blood pressure and slows the heart, which offsets the prednisone effect (higher blood pressure and higher heart rate).  So now I have an almost perfect 60/80/120… 60 heart rate 80/120 blood pressure.

  • Ruth

    Member
    December 15, 2022 at 5:34 pm

    I was diagnosed last year with myasthenia gravis with musk. My neurologist suggested using Rituximab, but instead used ruxience because that is what my insurance would agree to.  Ruxience is a bio similar of Rituximab, from what I understand.

    It worked well. I started in April. I had 4 infusions in 1 month. After a couple of infusions I noticed my head was staying up on its own, and my walking was easier. It’s time now for another series of infusions. I have felt great til now. Starting to feel some symptoms  of myasthenia now.

  • pmdwarrior

    Member
    December 17, 2022 at 12:37 am

    I had 3 years of IVIG monthly and Cellcept. Needed something more as nothing was improving. Changed to Rituximab infusions and continuing on Cellcept. Had first IV dose Rituximab end of August and 2 weeks later another dose. Will have a booster in March 2023, 6 months later. Miracle drug! If finally kicked in about 5 1/2 weeks after the first infusion. I have energy and able to do things. Brain fog eased, muscle pain eased, At this point I would say I have 80% of my life back. Huge difference for me. No adverse side effects at all.

    • Larry Slack

      Member
      December 19, 2022 at 2:18 pm

      Excellent, so glad you found relief with Rituximab.  I had my first infusion Dec 7 and second one will be Dec 21.  I’m hoping for less fatigue.

      • Connie

        Member
        January 9, 2023 at 9:17 pm

        Did your neurologist prescribe the Rituximab infusions for you? Mine says she can’t prescribe them????? Are the rules for it different in Florida than it is in Michigan? Thank you Connie

    • Larry Slack

      Member
      December 19, 2022 at 2:18 pm

      Thanks for positive feedback about Rituximab.  Had first infusion on 12/7 and second will be 12/21.  Haven’t experienced any improvement yet with my fatigue, but I’m hopeful.

  • michail

    Member
    December 19, 2022 at 2:23 pm

    Takes at least 1 month to improvement, possibly up to 3-4

  • Lester Shaw

    Member
    December 22, 2022 at 12:06 am

    I was diagnosed with MG and Musk antibody after seeing three different Dr’s. I was finally sent to Yale Hospital to see the head neurologist and after testing was sent over to Smillow Cancer center to get Rituximab infusions. I had one infusion a week for four weeks and six months later I was given the same, one shot per week for four weeks.
    The infusions lasted about three hours each and made me very tired.

    I did notice a very good improvement after the first series, and more after the second series. It has been six years and I am now only on azathiaoprine 150 mg per day. My days are like pre Mg except for fatigue towards the end of the day

  • Marvin Yudenfreund

    Member
    December 23, 2022 at 12:36 am

    I’ve had gMG for 3 years.  Had 2 Retux infusions and passed up on my third one because of the introduction of Covid vaccines.  Got all the Covid shots plus 2 Evusheld shots.  The Retux in combination with Mesthenon worked great.  But over time, fatigue plus a little ptosis became apparent, so my neurologist suggested another set of infusions.  Just completed my second infusion last week.  I’ve experienced no negative effects from Retux.  The only cautionary note is that this stuff is highly immunosuppressive, so keep away from superspreader events and mask up during the Covid/flu/rsv season.

  • kenneth j. bialkowski

    Member
    December 23, 2022 at 5:14 pm

    I suffer from refractory MG and nothing seemed to work. I was hospitalized twice. I then had a series of Rituximab infusions. That was 3 years ago. It was like a miracle. With the help of 10 mg Prednisone daily and weekly Cuvitru infusions that I do at home I now live a pretty normal life. I am able to work and regularly play tennis and golf.  i recommend it wholehartedly.

  • Starlet Culp

    Member
    December 24, 2022 at 1:06 am

    I began Rituxan infusions in Sept. of this past year. I had 1 per week for 4 weeks. My next series is in March.

    I began feeling like I had more energy with 6 weeks or so. The mild swallowing and speech issues disappeared also. As time goes on I’ve noticed a slight return of the bulbar issues as well as the ocular symptoms (ptosis, double & blurry vision).

    When I see my neurologist next month, I’m going to ask if we can increase my mestinon. And, I look forward to my next round of Rituxan in March!

  • Jane Renkiewicz

    Member
    December 24, 2022 at 11:28 am

    I have 20 years ago with a return 3 years ago.  I have Musk MG and all meds- steroids,Mestinon, IVIG did not touch it.  After 2 rounds of Rituxab(6months apart) , I have been almost symptom free. I have been that way now for 2 1/2 years.  I only take azothiropine but hoping to be weaned off of that this summer.  It was a miracle drug for me.

  • Justin Heusner

    Member
    December 28, 2022 at 2:28 am

    I was just diagnosed this last September, and I have rheumatoid arthritis as well so my rheumatologist suggested I do the Ritux infusions because it helps with both MG and  RA both in one bag. I get one bag two weeks apart and I’m going back every four months so my next round is in January. I noticed some slight differences in my symptoms for the better, but I still am not where I feel I should be. Hopefully this next go round will prove me wrong. On the plus side I had no side effects from the infusions other than a headache on my first bag. The staff there quickly catered to my pain and by the time I left five hours later, I was good. I did see significant improvement in my swallowing and being able to eat, and I noticed my energy level was up and my balance issues were less. So it is working. I was just hoping for more of the symptom free result I guess. When it Comes to MG in its side effects, I have them all .On a sidenote I take Mestinon 60 mg three times a day as well.

  • Jennie Morris

    Member
    December 28, 2022 at 9:36 pm

    I have refractory MG and everything either causes dangerous side effects or doesn’t work. I’ve been on Rituxan infusions for 4 years – 4 weekly treatments then 3 months off, so 12 times a year. The side effects are weird but I have unusual side effects from EVERYTHING. Dry eyes that cause a significant loss of vision is the worst but resolves by the time the next series of treatments is due. Rituxan helps but now I’m combining it with Hizentra infusions and they boost each other and my MG is better controlled.

  • Bill Johnson

    Member
    December 28, 2022 at 10:36 pm

    I was diagnosed with Oculobulbar Myasthenia Gravis 25 years ago after experiencing an acute myasthenic crisis.  I was hospitalized for several weeks while I underwent several rounds of plasmapheresis, IVIg, high-dose corticosteroids, and ultimately a thymectomy.  I recovered relatively quickly, and for nearly two decades I was effectively treated with 150 mg. of daily azathioprine.  On a couple of occasions when my symptoms would begin to peak through the immunosuppression, short, 2-week treatments of high-dose prednisone were given to reduce the auto immune response.  In recent years, I was diagnosed with Anti-MuSK myasthenia gravis which slowly became refractory to azathioprine and IVIg therapy.  After several rounds of hospitalizations for exacerbations (successfully treated by numerous PLEX and prednisone), in 2020, it was felt that IV rituximab 1,000 mg. would be most cost-effective.  I was slowly titrated off the prednisone over a 14-month period.  I have continued that treatment plan for the past 2 years and have remained <u>symptom free (now only Ruxience™ 1,000 mg. IV every 6 months, due to insurance)</u>.  Haven’t used mestinon in over 2 years.  I have no side effects, other than immunosuppression (i.e., no B-cells, but moderate T-cell response).  I now see an immunologist on a bi-annual basis to ensure that my immune system status is monitored – this has proved to be a worthwhile referral.

  • Donna J McCauley

    Member
    January 2, 2023 at 3:32 pm

    Hi,  I’m on rituximab for several months now. My doctor had to start me on a lower dose due to , i am so sensitive to everything. I’ve had MG since 2016. I started with the first ivig med and mestinon. Eventually i had allergic reactions. I went through the gammit of all the oral drugs, and either my labs went to high or i became allergic to them or they didn’t work for me.  My doctor had started me on predisone some time ago,due to drug reactions of the past meds. It helps, but i don’t like the side effect of weight gain.  Now with the rituximab, he has been decreasing my predisone and slowly increasing the rituximab. I do feel better on it, i do have lower body weakness.  It is getting better. I couldn’t go up step without pulling myself up them. I started with getting better with steps. I do have to watch how much physical activity i do.  Before this i was an  athletic type, it took me some time to slow down. I still try to keep my walking in , all thou it’s only blocks instead of miles.                                                                                                                                                                                   I’m down to 7.5 mg of predisone, and get the rituximab every 3 weeks now.( I started on every 2 weeks) The only reaction i’ve had from it is a itchy rash, from my chin down to my collar bone. I manage it with either benadryl  or just cold cloths to the itchy area. I can’t always take benadryl due to the sleepiness it causes.  I  usually get the reaction the next morning with the rash.  It feels like a long road, but hang in there. My doctor is very up front with me, so i do already know what the next step MIGHT BE. I feel if you keep a good repor with your doctor, you can research ahead and ask the questions you feel necessary to ask. I make a little notebook for questions i need to ask. I feel that way, i’m more in charge of my health.                                                                                                               I’m trying my best to keep to doctor orders of slowing down, I’m 65, and i imagine it is very difficult for those that have children or still an age of activity, or grandchildren.  Good luck to those that are thinking about this medication, or are starting it.  Also , it helps being in a support group. I can’t always get to my meeting, but i can call the person that is in charge of the group, and she can either direct me to some information, or just talk, at times sometimes that alone can help.

    take care and god bless.

     

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