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I agree...with all of you...slow is better...thanks
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Cindy, having double vision is the pred sideffect, red eyes, scleritis etc. The mass however is not. Has it been diagnosed?
Jolanta
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Doug, adjusting cytoxan is not done, the dosage is done by patient's weight and then its not lowered but just cut off. So pred is the only one that we can rely on by either taking a lot in relaps or lowering in remission. I'm surprised your doc played with cytoxan dosage.
Jolanta
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Here is something I found on the internet. It brings up the possibility of WG being the cause of pseudotumors. See below, in red:
Name
Sclerosing Orbital Pseudotumor
Description
Sclerosing orbital pseudotumor is uncommon. Due to unknown reasons, these tumor behave differently than other types of pseudotumor of the orbit. They grow more slowly, cause less pain, and are characterized by scarring (hardening of the tumor tissue).
Symptoms
Sclerosing orbital pseudotumor is not cancer. But, by local growth it can cause bulging of the eye (proptosis), double vision (diplopia) and loss of vision. Sclerosing orbital pseudotumor can (rarely) extend into the sinuses, brain, and other orbit.
By local growth sclerosing orbital pseudotumors can cause bulging of the eye (proptosis).
Diagnosis
Sclerosing orbital pseudotumor is usually diagnosed by biospy (orbitotomy). Once the diagnosis is confirmed by pathology, systemic testing to rule out specific infectious and inflammatory causes should be performed. For example, an ANCA blood test and a chest x-ray should be performed to rule out Wegener's Granulomatosis. Many of these patients have a past medical history of sinusitis, sinus surgery, or inhalation drug abuse. Therefore, concurrent treatable sinus disease should be addressed.
Come to think of it, I was 70 lbs. heavier at the onset of treatment (fluid build-up in tissues because of renal issues) than I was when the Cytoxan dosage was reduced. Apparently that was the reason for the change in dosage. I'd forgotten about that! I do recall my doctor had some problems getting my dosage worked out because I was right on the edge of needing the next level of dosage, based on weight, but, when he put me on the higher dosage, I reacted poorly to it, so it was reduced to address the problems it caused. If I'm vague here, it's because I don't recall exactly what it was that prompted the lower dosage unless it was anemia or something like that. I had blood issues for a couple years.
Last edited by Doug; 05-08-2009 at 06:36 AM.
Reason: typo; grammatical issue; content issue
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Anemia and weight adjustment would do it
Jolanta
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Thank goodness for this WG forum...
I explained to my Rheumy how some Weggies with their BFF have responded when their pred's were lowered and the difficulties each experienced. I constantly refer to many of you when I relate to my situation and the joint pain flare up I experienced when I dropped the pred from 20 to 15.
It is so comforting to know that I can make decisions based on my experience and others who face similar crisis.
On a positive note, I guess; is that I am off of Cytoxan and officially making the switch to Cellcept...keeping the pred at 30 and dropping to 20 by months end.
My blood work has been normal or "chemically induced since January" except for that flare I had a month ago when my sed rate went from 20 to 35.
So I am extremely GRATEFUL for this forum..because I am now more informed about how Weggies and their BFF relate to their disease and the meds that helps them get through it.
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I second that. Until I found this group last fall, I had no idea what was going on.
Best of luck with the Cellcept, Richard. It's been great for me, and I hope it works even better for you. It's a huge success to go off cytoxan!!!
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Cellcept
Richard-
Congratulations on the move to CellCept! That is a vote of confidence in your status as a "in remission" or ""may be in remission" candidate. In a few months, with no more symptoms, your rheumatologist may very well call you an "in remission" weggie! Regardless, you've hit a major milestone in your Weggie Experience! A good one at that! It's good you've been able to take the experience of others in this forum and use it to become an involved weggie, one in charge of your treatment! Good for you! That's been the point of our involvement in the forum, those of us farther into the experience, to give you newer weggies a sense of progress in your treatment, to open your eyes to how the treatment progresses. I hope my contributions helped in part. Regardless, I can only repeat: Good for you! You've "graduated" to an important "new normal" by virtual of getting off Cytoxan and reaching a lower level of Prednisone.
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The move to Cellcept and Pred was quite good for me in the early days, but the real breakthrough came when I changed to Mycophenolate. If you find that you still have problems, I would enquire about changing to it.
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Jack
I've been looking into Cellcept as I too am coming off of cyclophosphamide in the next few weeks. Google seems to tell me that Cellcept and Mycophenolate Mofetil are one and the same drug - Cellcept being the brand name.
Does anyone know if this is the case and if not, how do they differ?
Last edited by Luce; 05-08-2009 at 08:26 AM.
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