Rituxan & Ear Pain- How long for Rituxan to work?

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Hi all! How long does it take for rituxan to work and for you to feel better? I have Wegeners and have been dealing with flare ups in my ears and sinuses that are extremeley painful and excrutiating that last two years. I have been fluctuating with my prednisone doses (ranging from a high of 60mg) to deal with the pain and to bring down the inflammation from the flare up. I just had two rounds of Rituxan in September & October 2016, However, I am still getting flare ups in my ear/sinus. I was finally able to taper down from the prednisone (first time I am completely off prednisone and not on any dose in last 2 years!). However, my ear feels hot inside and slightly inflamed. How long does it take for the Rituxan to work? I haven't been able to be physically active for over a year and everytime I get my blood pumping and I sweat, I get another flare up and am in pain for days in my ear. Does anyone else have this problem also?

Wishing everyone well!

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  • Posted

    Hi

    In my case, it took about 8 weeks when I started noticing the difference, I've been over a year with ear problems as well, now I'm wearing hearing aids, thanks God no pain or swelling, just fluid in my middle ear, with a  saddle nose and waiting to see when can be fixed, and on 7.5 mg of prednisone daily, last week of October I had another Rituximab dose, which is gonna happen every 6 months...Good Luck

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    • Posted

      hello! thank you for your reply! This is helpful. I haven't had any fluid in my ear so far or saddle nose. I am now a little over a week without Prednisone after being on it for over a year and am suffering withdrawal sypmtoms (extreme fatigue, headaches). Good luck to you as well and hoping everything gets better for you too!

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  • Posted

    Hiya

    Nice to hear from you. Guess you are in the US of A as we know Rituxan as Retuximab. I had my 6 monthly infusion on Friday last. Always feel better (more energy, less fatigue and general well being) the next day. I have had 4 infusions now and this last one has not delivered the same level of benefits . Good job you are off the Prednisolone, my spine collapsed because I took them for 20 years. Good luck to you. Dave

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    • Posted

      Hi Dave! Thanks for your reply! Yes, I'm in the US (New York). That's interesting to know that your last infusion you didn't have the same benefits as your first treatments. Thanks, being off prednisone is hard (still have pain without it and having severe withdrawal symptoms such as extreme fatigue and headaches). Sorry to hear about your spine collapsing from it! Wishing you positive thoughts as well and best of luck. Jamie

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  • Posted

    Hi Jemmalyn Does doc have you on an antibiotic like bactrim? I think I have finally achieved remission through Rituxan infusions (4) and Pred now down to 10. After that he put me on Imuran 3 a day. You must get that sinus infection under control. A year ago mine were so swollen they were pressing on my brain and causing terrible neurological side effects. I couldn't get out of bed without falling. Please take care of those sinuses! Good Luck!

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    • Posted

      Hi Ginny, I was taking Bactim right before I started Rituxan, but I had severe nausea & dizziness (to the point to where I couldn't eat or stand) so I discontinued it and never completed the full dose. Did bactrim help with controling your sinuses? Also before Rituxan, I had previously tried methotrexate, imuran and cellcept, but my sinus and ear flare ups were getting worse and worse. That sounds terrible that yours was causing terrible neurological side effects. I feel like mine get so swollen too like that. I'm happy to hear that you are finally in remission! I will have to be patient with the Rituxan then and maybe I should give bactrim a second try. Thanks for sharing and good luck to you too and hope you maintain remission!

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    • Posted

      Hey Jemmalyn Sorry you have such bad reactions to the Meds,  Ask your doc for a different med that will help your sinus infections. I. Can always tell when my sinuses are becoming infected because I experience a bad smell. I finally realize it is coming from my nose. LOL. I find using the netipot nasal wash is extremely effective as well in warding off infection? I also had ear problems a few years ago and it was madining. Felt like I was talking inside my head but no pain involved. Keep in mind I felt very sick for almost a year before the Rituxan followed by Imuran finally kicked in. Keep the faith and ask your doc for another med for remission. Good luck!
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    • Posted

      Thanks, Ginny. This is helpful advice! That's good to know that it took almost a year before the Rituxan and Imuran kicked in. At least I know that I shouldn't be expecting results immediately as I am still feeling sick 2 months after the Rituxan. I'll definitely follow up with my doc on other meds to deal with the sinus infections because they are absolutely painful when they come and resorting to high doses of prednisone to deal with them is a bad long term solution. Thanks for taking the time to share your experiences! Thinking positive thoughts for you too!

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  • Posted

    I was diagnosed with WEGNERS April 2015 . Started Rituxan in July same year and have had it every 6 months . No problem with my ears, but I do sweat all the time with any active . Hate to sweat . As of today the day before Thanksgiving 2016 I don't feel any better . Iam throwing up all time, had to have a colostomy bag placed December 2015 ( in hopes to have it reversed soon ) 18 pills a day . Hard to expect this diagnosis. I was so active always on the go and enjoy life now nothing . I had nerve damage both legs and right a . But Iam still alive ....

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    • Posted

      Hi Jeanene, thanks for the input and sorry to hear you are not feeling any better from the Rituxan. I haven't had any relief either from Rituxan yet, but maybe I need to have more infusions. Throwing up all the time sounds terrible, is this a side effect from the Rituxan or the disease? I know what you mean when used to being active all the time and now can't even do anything anymore, it's very frustrating thinking about how our old lives used to be and how inactive we are now. But like you said, we are alive and I'm grateful for that. Sorry to hear about the nerve damage. I'm praying that everything takes a turn for you and that they find the right treatment for you. Thinking good thoughts for you!

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    • Posted

      Thank you for all the good thoughts !! How old are you and where are you from ? Guess I was having a pity party for myself !!!! Like I said Iam still alive, just getting kinda CRAZY at times ..
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    • Posted

      I'm 32 and originally from California but live in New York, NY, US. I started to feel sick when I was 27 and they misdiagnosed me as having RA until the last year or so is when they started treating me for Wegeners (thank goodness!). I know what you mean! I have a few pity parties for myself a few times a day smile And yes, it does get crazy at times and sometimes it's crazy how we live through the pain and go through what we go through, and still manage to do normal things like everyone else.

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    • Posted

      Hi again 😀 I move in Spokane Washington & spend time in Great Falls Montana . My daughter ( who is 32 ) lives there with her husband & my wonderful grandson .. they are the ones who keep me going . Just want to tell you to have a good week . Mine filled with lots of Dr's APPTS and blood work . Iam on Facebook if you want to friend be JEANIE ESKILDSEN. Are you able to still work ? Me NO full disability. Hate it .

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    • Posted

      Totally understand about the doctor's appointments. Dr's appointment and blood work is another job in itself. I am still working full time and am struggling. I tried to take leave from work but learned that my job would not provide paid time off, so was not able to take leave and financially support myself if I stayed home. I come to work very sick & in pain a lot of times and struggle to get through the day. It's very exhausting going to work full time and going to doctor's appointments before, in between and after work. It's also hard because I look young and don't look sick, so people don't think I'm sick and think I can still do things like everything else. Very frustrating. I have a very stressful job too (I'm a City Planner for all of Manhattan in New York City). That's nice that your family lives in New York! Yes I'm on Facebook. I will add you and we can throw pity parties for ourselves smile It's always nice to talk to someone else who understands what we are going through! My name is Jamie Capito on Facebook.

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    • Posted

      Jamie you need to try to get disabled it's not much but it's something to live on . My Dr's got together ( 8 ) of them . Took 3 months not 6 years to get it . Thank God over all my jobs I made really good money and good investments with my money . Iam comfortable . So talk to your Doctors. Tell them how you feel and how are struggling on a daily bases .

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    • Posted

      I understand about the pity parties!  I get that way some times too.  I am 65, single, live alone in Yakima, WA,  and have to take care of an elderly mother to some extent.  This disease is so frustrating because it is so debilitating!  And, you don't look sick, but you really are!  I finally broke down and asked my doctor if I qualified for a handicapped sticker and he gave me a temporary one.  He is hopeful that this will just be temporary, but told me it can take 2 years to get this under control!

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