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    Default First Rituxan treatment

    Hello everyone!!

    I finally got approval for 4 rituxan treatments and the first one starts on this Monday at UPENN. Hopefully everything will go well & not have too many side effects. Being on this pregnisone has been a challenging and it has made me gain some weight. Especially in my face. I'm tapering now so I started on 40mg two weeks, now I'm on 30mg and on saturday i start 20mg for two weeks, then 10mg. After that I'm hoping I go off of it.

    Anyway, if anyone has any advice on the Rituxan, please let me know.

    Michelle

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    Be careful about tapering too fast. Your body needs time to adjust and resume making cortisol. If you go too fast, you may induce a flare. Talk to your doc about this.

    Once I got down to 20, I reduced 2.5 mg every two weeks down to 10 mg. From there, I dropped 1 mg/month down to zero. I had a mild flare after being off pred for four months. Went back to 60 and tapered again. Got down to 3 mg and noticed symptoms reappeared. Went back to 5. Symptoms disappeared. I've been at 5 mg ever since (2+ years).

    I understand about weight gain. What has helped me is moderate exercise and eating cleaner. I don't eat processed foods. I eat more fresh fruits and vegetables and less grains and added sugars. It's taken almost three years, but I'm within five pounds of my pre-wegs weight.
    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

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    I had my second rituxan treatment this week. Did not have any issues. Plan on being at your first treatment at least 7 or 8 hours. Take something with to keep you occupied. The second one is not as long OK just about 6 hours. I have had some back pain. Back pain is a side effect, but not sure if not just from sitting in the treatment chair. Good Luck. You will do just fine.

    As for the
    prednisone it is very challenging. I call it my LOVE/HATE drug. Love the way it helps the joint pain and swelling HATE the side effects.

    Last edited by alcaambra12; 07-21-2016 at 12:22 PM.

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    Hi Pete,
    Yes I did hear about tapering slowly. The doctor actually told me to taper every two weeks 10mg but I'll be seeing him again on Aug. 5 for follow up and I'll ask him about it. I couldn't believe I gained 10 pounds in the last month and that's on top of an extra 15 pounds I had on me from not exercising. I have been eating much better and trying to add more vegetable & fruit. Can't wait to get back to exercising!! Thanks for the advice & support!!

    Michelle

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    I have to start my Rituximab treatments again due to a flare and I will be at UPenn this Friday for the first infusion. I'm on 60mg of prednisone and we will discuss the taper schedule as we move forward. Best of luck with the infusions. They will take great care of you there!!

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    Quote Originally Posted by alcaambra12 View Post
    I had my second rituxan treatment this week. Did not have any issues. Plan on being at your first treatment at least 7 or 8 hours. Take something with to keep you occupied. The second one is not as long OK just about 6 hours. I have had some back pain. Back pain is a side effect, but not sure if not just from sitting in the treatment chair. Good Luck. You will do just fine.

    As for the
    prednisone it is very challenging. I call it my LOVE/HATE drug. Love the way it helps the joint pain and swelling HATE the side effects.


    Hi,
    Glad to hear you are not having any issues with the treatments. Makes me feel so more at ease for Monday. My appointment is at 8:00am so I'm expecting to be there all day. You are so right about the prednisone. It does help the joint pain but the weight gain really stinks.

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    [QUOTE=blu4runner;107727]I have to start my Rituximab treatments again due to a flare and I will be at UPenn this Friday for the first infusion. I'm on 60mg of prednisone and we will discuss the taper schedule as we move forward. Best of luck with the infusions. They will take great care of you there!![/QUOTE

    Thank you & Good luck with your treatment on Friday!! I really love UPenn and the doctors

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    Yes the staff at UPenn is wonderful Let us know how your treatment goes

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    Hi Michelle,

    UPENN is a good place to get tx. I'm sure they will know how to help. Rituxan has worked well for many people, with less overall harm than Cytoxan.

    Rituxan had "negligible effect" for me according to my specialist. I had a severe flare at the time and I'm probably not a good example of the drugs effectiveness. Cytoxan did very little as well.
    I doubt we would have been able to accurately assess any of my treatments if not for daily charting of wegeners symptoms.
    I use a 1-10 severity scale and have about 7-10 symptoms that I track. I got this advice here and it has made a huge difference.

    The Wegeners BVAS Evaluation Form is also helpful. Especially for me. Since I like to think "I'm not that bad"... and slough off more serious weg involvement.
    So that scale helps me assess my own symptoms and know for myself that something like RTX is necessary or if it's working or not.
    This scale helps me see if I have a severe flare, limited flare, persistent disease or remission (never had the pleasure of remission, yet...!).
    I'm a dangerously optimistic person so I need to see it in black and white since I tend to remember everything as better than it was when in front of my doctor.

    Hope this helps. Prayers for your successful FULL REMISSION!

    Best wishes,
    Tom
    Attached Files Attached Files
    Best wishes,
    Tom
    ----------------------------------
    2 years untreated. Dx w/ biopsy - 2000
    Tx Plan:

    NUTRITION
    RESTORATIVE SLEEP
    RAISE ANABOLISM
    REDUCE ALL INT / EXT STRESSORS

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    Quote Originally Posted by Green Grass & High Tides View Post
    Hi Michelle,

    UPENN is a good place to get tx. I'm sure they will know how to help. Rituxan has worked well for many people, with less overall harm than Cytoxan.

    Rituxan had "negligible effect" for me according to my specialist. I had a severe flare at the time and I'm probably not a good example of the drugs effectiveness. Cytoxan did very little as well.
    I doubt we would have been able to accurately assess any of my treatments if not for daily charting of wegeners symptoms.
    I use a 1-10 severity scale and have about 7-10 symptoms that I track. I got this advice here and it has made a huge difference.

    The Wegeners BVAS Evaluation Form is also helpful. Especially for me. Since I like to think "I'm not that bad"... and slough off more serious weg involvement.
    So that scale helps me assess my own symptoms and know for myself that something like RTX is necessary or if it's working or not.
    This scale helps me see if I have a severe flare, limited flare, persistent disease or remission (never had the pleasure of remission, yet...!).
    I'm a dangerously optimistic person so I need to see it in black and white since I tend to remember everything as better than it was when in front of my doctor.

    Hope this helps. Prayers for your successful FULL REMISSION!

    Best wishes,
    Tom

    Hi Tom,
    Thanks for the WEG BVAS eval!! That will definitely be helpful. My Wegs involvement is in my nasal passages and has not advanced to my lungs or Kidneys but it probably would eventually if I don't get the RTX treatments. I do have some nerve damage in my right ankle. Hopefully the nerve will be restored with the treatments. I also have a saddle nose deformity. Sounds strange but in a way it was a blessing to have this physical marker since Wegs is hard to diagnose and with all the sinus problems I was having over the past two years the ENT saw my nose and ordered the bloodwork for Rhuematory factor & to see if I had an antibody in my blood which both came out positive. Then came a whole bunch of bloodwork and finally months later I got my diagnoses of Wegs. I think it would have been harder to diagnose if I didn't have the saddle nose.

    I did hear that Cytoxan is very toxic and many doctors are not using it as much anymore because it can be dangerous to the bladder.
    Thanks for the good wishes!
    Michelle

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