Retuxin every 6 months

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I was diagnosed with wegners granulomatosis almost 2 years ago. Originally they treated me with prednisone and retuxin. I was on prednisone for about 18 months.

I first did 4 retuxin treatments in 4 weeks. 6 months later I did another 2 treatments over 2/3 weeks.

It's been over a year since my last retuxin treatments & I have been off prednisone for about 6 months. I feel fine, no flare ups.

My rumatologist is recommending I do a couple retuxin treatments every 6 months as a precaution.

Obviously I rather not and haven't done it in over a year. Been doing blood work and urinalysis every few months.

It's in the back of my mind that I should do it. Just wondering if anyone is in the same boat as me. Debating whether to do it or not

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6 Replies

  • Posted

    Hi

    Thanks for the input, I'm sure there is many that will read that and feel relief they ain't the only ones.

    I have rituxan/ritoximab every six months also.

    What dose do u have ?? I ask because I was diagnosed in 2007, went through cyclophosphamide etc etc etc and finally after changing specialists I was given ritoximab( called this in the UK moreso )

    every 12 months ( two hits at 1gram per hit 2 weeks apart.

    I've now had to stop the infusions as my immune system ( white cell count ) is dangerously low.

    With this in mind, I'd recommend you do have the treatment so long as ur white cell count is not too low.

    Flare ups come fast and hard my friend , and believe, I don't know a wegeners patient there hasn't flared up.

    Good luck

    Jay

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    • Posted

      Sorry I missed out that I too had it every six months after 2 years of it flaring up before the 12 month infusion came.

      Having it six monthly kept it at bay until I had to stop the infusions

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  • Posted

    OK, I'm probably one of the longest survivors of Wegeners. Diagnosed in 1998 after two years of misery. It's taken out my hearing, the steroids (every day for nearly 20 years) have given me Diabetes, Osteoporosis (spine has collapsed), Pyoderma Gangresom (look it up - it's truly dreadful. Rheumatoid Arthritis, plus, plus plus. But, you have to trust the medics (just so long as you made sure they were the right ones for you in terms of experience of and expertise in treating Vasculitis) Cheers.

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    • Posted

      I have had Wegener's for 8 years, and I too suffered before I was diagnosed. I've lost my hearing in my right ear, Have taken diabeties from taking so much predisone, Rheumatoid Arthritis, my toes are deformed, my finers hurt and I have constant mucus in my sinuses and throat. After years of trying to keep my teeth, I had to have all of them pulled out. I am going to look up Gangresom to see what it is. Hope you get better. Have faith.

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  • Posted

    I've never had Rituxin. I was treated in June 2009 with Cytoxan and Predisone. All I've had since then is predisone, but I'm going to have to go thru another treatment soon. I'm not doing so well with my sinuses. And i'm so weak. I am 68 years old, so maybe that has something to do with my weakness. I hope you get better soon.

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