Wegeners and Rituxan

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Hi Guys,

I have potential Wegeners. Don't know if it can be confirmed. I started having nasal inflammation and after allergic test and a few blood work, doctor diagnosed with Wegeners. No biopsy due to only Nose getting affected. Doctor advised starting methotrexate, but didn't. Started with PRednisone and my nasal inflammation got better and was able to breathe. In December 2015, had a viral and lost hearing in right ear. Didn't pay that much attention and then contacted my doctor and said this is a sign of Wegeners. Went to ENT and he asked me to take Prednisone 60 MG. Took it since i had senoneual loss. Now doctor has advised to start Rituxan Therapy. I wanted to know if anyone has gone through the same thing and what was their experience with Rituxan. I am 39 year old male and no other problems. But just wanted to know side effects you have had. They have told me that i will be on Rituxan infusion once a week for four weeks and then methotrexate.

Any insight would be helpful. Looking for other Wegener's patients to chime in.

Thanks

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8 Replies

  • Posted

    My husband had rituxin treatments fall 2014. His loss of hearing went away. His kidney function has improved. He is doing well. Finally got weaned off prednisone summer 2015. He takes no other medications for wegeners. His diagnosis was confirmed with a lung biopsy even tho his lungs presented no symptoms. It was confirmed again with a kidney biopsy. Good luck to you and know that PMA (positive mental attitude) helps get you through.
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    • Posted

      I appreciate your response randamar. I wanted to know if your husband had sensoneurial loss or just conductive loss. what kind of side effects did he have with Rituxan. Also did he have lesions in lungs when diagosis was confirmed. Did he have blood in kidney before he went on treatment.
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    • Posted

      He complains of ringing in his ears but his hearing is back. For 2 months before he was diagnosed he was deaf. In those 2 months he literally was dying. They would give him prednisone and he would improve a bit but no hearing. He was hospitalized for a week in the middle of the 2 months as his gout flared up and his blood work was haywire. His lungs had something but at the time they told us it was pneumonia. I guess we didn't ask enough questions as I am unaware of the conductive vs sensonuerial. Also we were unaware his kidneys were failing. The doctors hospitalized him a second time for another week after seeing his blood tests. He ended up having 5 plasma pharisees treatments while in the hospital but we don't know if there was blood in the kidneys. Sorry I'm not really answering your questions. He says to tell you he also has numbness in his feet. Sometimes his feet are burning up and other times freezing. He is exhausted most of the time. He has 'chemo' brain where he can't always remember things or think of what he is trying to say. The doctor says the rituxin is controlling his disease he is not in remission. He is depressed possibly partly because he had to go on disability, as he is a 60 year old truck driver, which has changed life. When they were looking for confirmation they said 3 different biopsies could confirm. ..lung, kidney and/or sinus. Couldn't you have a sinus biopsy? None of them are pleasant. Good luck with your treatments. We don't really know how much of what he is going thru is the result of the disease and treatments vs the aging process. My husband says whatever issues he has now still beats the alternative. He would have died if not for the treatments he had.
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  • Posted

    I had the same symptos plus kidney infection and a stroke.i have been on the same treatment plan for 2 years. I hated taking predisone once i started eating it was hard to stop and it just made me feel lousy - but it helped! Do your reseach ie. Mayo clinic srudies and it has helped me understand more about wegeners and the treatments out there. Everybody is different. I have knee and leg pain so my dr tapered me off as fast and safe on taking prednisone - good luck to you
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  • Posted

    I did it but not the mexthotrexate. I did and still do prednisone when needed. I have some flare ups like joint pain and swelling and fatigue a lot and shortness of breath and bronchitis a lot. Eye sight is going bad.But my Dr says this is not wengers. I think I know more than him. Lol
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  • Posted

    Hi Gucci

    I have a diagnosis of Wegners plus Rheumatoid Arthritis which is why i was given the opportunity to try Retuximab. My first infusion was 3 weeks ago then the next one 1 week ago. I also take methotrexate which, alone, hasnt been able to stop the diseases effectively. 

    So far so good. Im only 1 week on from my second infusion and the effects of the retuximab is still pressent but slowley decreasing. the first infuion i had alot of weakness in my legs, dizziness, were the main issues, plus swelling in my limbs. this recent infusion i have insomnia pretty bad and stomach issues and a bit of dizziness but not as bad as the first. I can live with these side effects as they are decreasing so thats a good sign. 

    The payoff so far is that for my arthritis i have had NO stiffness in my joints and my nasal congestion is better (WG) so, for now i'm really cautious but happy that there has been a major change even in a few weeks. WG was diagnosed in my sinus/kidneys/lungs/skin effecting eyes, ears and sinus mostly. 

    I can run through in more detail about the infusion if you need.let me know.

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    • Posted

      Hi Bellanada,

      Quick question. besides weakness what other side effects did you have? What was your dosage? Did you have any skin breakout, hives, etc.

      Has the doctor asked you to continue Infusion for four weeks and then stop or do you keep going

      What about after infusion. Do you start methotrexate?

      Thanks

      gucci

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    • Posted

      Hi Gucci,

      During the first infusion, around 1.5 hour in, i broke out in hives so they had to slow down the infusion rate, so the first time took 9.5 hours all up with doctors visits. The second infusion they uped the steroid they give you, so i didnt recive that reaction, but my blood pressure fell significantly, but it came up slowly so there was no issue. 

      At this point im 10 days on from the second infusion and ive yet to see my specialist so im hoping to see him in the next week or so, at this stage there is no immediate plan for another infusion in the next 2 weeks.

      I was already taking methotrexate as part of my chemical therapy, just 10mg peer week, they asked me to up it to 20mg but i got headaches often so stayed at 10 which is a small dose.

      My side effects all up included: prominant heart beat, flushing, night sweats ( they are lessoning now) fatigue, aches and random pains, racing pulse, dry cough (briefly) Diarrhea. 

      Im a 38 and female.

      not sure of the dose of the infusion.

      Bella

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