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Rituxan maintenance
I wonder how long it takes before peripheral B-cells start showing up after a single 1000mg infusion for maintenance therapy. There's quite a bit of variation from person to person, but I have no idea how large the variance might be. If folks share this info we might learn something new.
In my case, B-cells showed up 8 months after the first 4-round treatment, then 10 months after the 1st maintenance infusion. It's been 11 months since my last infusion and the B-cells are still at 0%. Although some docs follow a 6-month regimen, mine prefer to wait until B-cells show up.
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I really think it depends on the person and how well the treatment works for them. I'm sorry I don't have a good answer to your question. I am wishing you all the best that it works well for you.
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Have not had B cell count checked for awhile - I think last checked in the summer and they were at O% and that was about 8 months since initial infusion
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Hi,
I also have questions about Rituxin treatment.
I just started Rituxan treatment 2 weeks ago. I just had my second infusion yesterday. I am scheduled to have 4 infusions so I am half way there. I have not felt any symptom improvement yet. Dr. said it was a lot better than Citoxin treatment.
My kidneys and lungs have been affected but not too too bad yet. My worst symptom is the connective tissue / nerve pain symptoms in my feet, fingers, arms, face. Nerve symptoms include the following: major numbness/loss of feeling, tingling feet and hands - like permanent feeling of pins and needles (like when your legs are waking up from being asleep), a lot of pressure (like vascular pressure) in my feet, feet feel like I am dragging two rocks when I walk. I googled these symptoms and found they references to paresthesia and/or neuropathy. Neurologist said I had neuropathy but that we couldn't do anything until we get disease under control.
They are monitoring my blood work during treatment. I think they are looking at platelets and white cell count and stuff like that to make sure I don't have an infection or my immune system doesn't shut down.
My question is how do they monitor the effectiveness of the RTX treatment. What do they look for to make sure it's working?
What is this B-cell count your are talking about?
So far, I don't feel any improvement in my symptoms. I am really worried these nerve issues, if not addressed, are irreversible. They are really debilitating.
This is what my Dr said when I asked her how to
The way to monitor is usually following the symptoms and the inflammation markers as well as organ manifestations. Looking at the labs for kidney and urine. Labs are only part of assessing the improvement. ANCA numbers may or may not improve. Not necessarily a correlate to activity.
What have others experienced as far as when the Rituxin treatment starts making a difference?
I am on huge doses of prednisone (60 mg/day) to control the nerve pain symptoms. If I try to go down to 40mg, the symptoms worsen. Dr says we need to reduce prednisone ASAP but treatment won't kick in.
I am really frustrated.
Would love to hear if anyone else out there has this connective tissue kind of GPA. haven't seen anybody mention this kind.
Jeannette
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I think the doctors that treat Wegs share your doctor's opinion. Symptoms of active Wegs are most important, then inflammation markers and organ function, especially the kidneys. For me, my symptoms have often pre-dated the results of the lab work.
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My doctor usualy says that clinical symptoms is the most important issue to evaluate Wegs disease. Besides of that, ANCA, urine and inespecific inflamation markers are secondarily important. Rituxam takes to me 45 to 60 days after last infusion to disapear all the symptoms. I whish you the best.
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Omg! That's such a long time!
I don't think I can stand the nerve pain plus the side effects of the high doses of prednisone for that long.
What else can they do?
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Would you care to explain what b-cells are and how they help me?
What blood work do they have to do to get this B-cell presence?
sorry I am very new to this disease but it's moving very aggressively on me.
Jeannette
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Hi Jeannette! B-Cells are the problem of Weg disease. They produce ANCA antibodies that are inducer of endotheliun (internal layer of veins) inflamation. Rituxan destroys B-Cells than stops ANCAs production. After some time, it dependes on person to person, the bone marrow produces more B-Cells, that is a flare. Only one clone of B-Cells produces ANCA antibodie. I whish you yhe best.
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How do you know the ANCA-producing B cells are being depleted? Is it a blood test?