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Thread: Rituxan

  1. #21
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    Quote Originally Posted by loisann11 View Post
    I had pneumonia and was suspected of GPA over 2012 Holiday season. I was officially diagnosed and treated Easter of 2013. I had more problems at Easter and went back to hospital now with kidney involvement and lung issues. At least they could do biopsy to make sure it was GPA. I had Rituxin and all the Prednisone etc. to clear it up. I have been using Rituxin for maintenance every 6 months. It is time again but I just don't know what lab work to look at to know if I need to. With 2 major organs already having been involved I am high risk of having more problems. Most of the time I feel fine for my age, 65 with all the normal aches and pains, so I don't know how to tell what counts anymore as symptoms or just normal. Anyone else with similar story?
    I have monthly labs done (mainly for my peace of mind): CBC, comprehensive metabolic panel, sedimentation rate, C-reactive protein, and urinalysis. I keep close tabs on my blood cell counts, creatinine serum, and evidence of blood in the urine.

    I'm a bit older than you, so I'm aware of the aches and pains. The joint pains that roam from one joint to another are the ones that get me suspicious that I'm starting a flare. I have a hip that lets me know when the weather is changing or I've overdone my exercise regimen.

    I got rituxin last August and have had no issues subsequent to that. At the time of my last rituxin, I also discontinued methotrexate, so rituxin is my maintenance drug, and I'll take it when needed as demonstrated by abnormal labs and/or a deterioration in how I feel. I also take 5 mg/day of prednisone and bactrim 3 x weekly.

    Good luck.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

  2. #22
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    I take no other drugs for this. Haven't since got off the prednisone almost 2 years ago. I do lab work every 3 months and have a great kidney doc that has others with this. He did great things to get this under control. I just suffer from the "is it coming back" symptom. I have no problems with rituxin, no after effects or problems as it goes in. I do worry a little about long term but n one knows what long term is. Curios why you still take prednisone?

  3. #23
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    I take prednisone because part of my adrenal function got clobbered while on high doses. My body does not make enough cortisol, so I need to take a small dose to meet normal needs and keep wegs symptoms at bay. I got off pred altogether for about three months, but started having symptoms (roaming joint pain and blood in urine). That led to my first dose of rituxin...
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

  4. #24
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    Quote Originally Posted by Pete View Post
    I take prednisone because part of my adrenal function got clobbered while on high doses. My body does not make enough cortisol, so I need to take a small dose to meet normal needs and keep wegs symptoms at bay. I got off pred altogether for about three months, but started having symptoms (roaming joint pain and blood in urine). That led to my first dose of rituxin...
    Thanks so much for the info. I do have small amount of blood in urine, doc says normal for me. My GFR used to be under the 59 so stage 3 kidney disease. But last labs showed up to 72. But I have a higher rate of protein in urine so... confused. This is new for me... Sed rate is up too. Just never sure which ones he looks at. I forget which one shows inflammation but with the arthritis I figure that should be a little higher. I guess I have been looking for a magic test that tells me those bad cells have grown back.. so the Rituxin can kill them again. Is it possible they can grow back but never attack me again?

  5. #25
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    Quote Originally Posted by loisann11 View Post
    Thanks so much for the info. I do have small amount of blood in urine, doc says normal for me. My GFR used to be under the 59 so stage 3 kidney disease. But last labs showed up to 72. But I have a higher rate of protein in urine so... confused. This is new for me... Sed rate is up too. Just never sure which ones he looks at. I forget which one shows inflammation but with the arthritis I figure that should be a little higher. I guess I have been looking for a magic test that tells me those bad cells have grown back.. so the Rituxin can kill them again. Is it possible they can grow back but never attack me again?
    My doctors tell me that some lab tests are not extremely reliable and that some variation in results, especially the GFR and SED rate is to be expected. The trend is what they consider most important and they repeat ones that seem out of line fairly soon, like a week or two, to be sure a problem is not developing. Labs like ANCA don't always correlate closely with out GPA symptoms so many doctors don't use them much or pay much attention to them. Your symptoms are best measure of activity and treatment needs.
    Knowledge is power! Wisdom is using it to make good decisions!

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