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Thread: RTX outcomes - my list

  1. #11
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    Thank you for the reply, being a nurse, I am always interested in signs and symptoms, and of course good outcomes. The way I have felt the last few days is such a reminder of the year I came down with this disease, which was 2weeks after my husband died. I was released from the hospital a few days after coming off the respirator. Mentally, I didn't know what happened to me, had to sort it out, but I was so weak, ESP. My legs, but as time moved on and I took the cytotoxin at home from home health, which was very hard for me, I had a lot of side effects, would take me around 10 days to recover after each dose. I took 6 of them, then went on immuran, started on 100mg. By the 3 rd month after coming out of the hospital I was weaned off prednisone, I had a hard time on that drug. I guess I am rambling, I really wanted to talk about the all over pain, like the flu, I almost couldn't stand it. This is the first time I remember hurting this bad since before I went into the hospital. I am very concerned. I did take another 10 mg dose of prednisone and was able to go to church. Any comments about the aching and pain in every joint? I promise I will update my experience with Rituxin, I would be so happy if my ANCA was normal! Thank you for all the support, Alysia, I'm praying for you, keep us updated on your recovery.. Marilyn

  2. #12
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    Hi Maryln.
    you realy had hard time. sorry to hear about your husband.
    the pred can help with the joints also. but you have to take more then 10mg. when can you see a doc ?
    it takes time untill RTX start working. meantime you have to take care of yourself with pred and Imuran. so better cosult WG doc.
    I wish you will feel better soon.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  3. #13
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    Default Getting ready for Rituxin

    Alysia, thank you for your answer and concern. An update on my condition, the aching and joint pain continued, then at 4am started with explosive diarrhea, which makes me think it wasn't a flare but a virus. I feel some better after sleeping most of the day, hopefully I will be able to work tomorrow. I am going on disability 5 days before my first infusion. My rheumy recommends 2 infusions, after reading on the forum, and listening to my MD, I am taking 8 weeks off to hopefully aid the med in getting rid of the B cells, and staying calm to decrease my stress levels. I am hopeful. Like I said I will keep the forum updated on this process, Rituxin, and my progress. Marilyn

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    Hello, its been awhile since I have been on here. I finished my first round of RTX 3 weeks ago. I am still waiting to see if it has helped WG. So far, no. I read your notes about hurting all over and feeling like you have the flu. My doc told me that was a sign that I am in a flare with my RA and the WG. I have been in the emergency room twice in 3 weeks. first time was because I couldn't keep anything down after the last round of RTX. It made me so sick. And then this past weekend the pain in my eyes was so bad and unmanageable, I had to go get IV painkillers. I had another MRI done today. I pray nothing else shows up on it. I am so sorry you are hurting so much. They wanted to bump me back up on the prednisone, but I said no. I just weaned myself down to 5mgs after being on 80 for months. I wish you nothing but the best with the RTX. I am praying for you. I thank God for this site. It has helped me, when doctors couldn't find an answer. I felt so alone and desperate, but this site has given me hope. Please keep us informed and know you are not alone and there are many prayers being said for you. You are not alone, Find that happy place in your mind and go there as often as you need to.

  5. #15
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    That is a fantastic list. I don't know too many of the drug all of you talk about especially when you all use abbreviations. I am going to ask my doctor tomorrow about the drug you told me about, the one that seems to have made you so much better the -RTX. It is wonderful that you can start getting on with your life again. I hope the improvements continue. I am actually doing really well right now. I have poor vision and poor hearing but I have gotten used to that now if I clear up these dry skin patches I should be OK. I am well enough to ride today so that is great. Your list is very helpful and I think I should try and draw a time line, it might really help.
    My blog: Animo

  6. #16
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    Quote Originally Posted by Barbara N View Post
    That is a fantastic list. I don't know too many of the drug all of you talk about especially when you all use abbreviations. I am going to ask my doctor tomorrow about the drug you told me about, the one that seems to have made you so much better the -RTX. It is wonderful that you can start getting on with your life again. I hope the improvements continue. I am actually doing really well right now. I have poor vision and poor hearing but I have gotten used to that now if I clear up these dry skin patches I should be OK. I am well enough to ride today so that is great. Your list is very helpful and I think I should try and draw a time line, it might really help.
    Hi Barbara.
    that is great that you can drive. and that you are going to the doc tomorow.
    RTX is called: rituxan ot rituximab. another name: mabthera.
    good luck !
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  7. #17
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    Default Doctors

    Quote Originally Posted by Alysia View Post
    Hi Barbara.
    that is great that you can drive. and that you are going to the doc tomorow.
    RTX is called: rituxan ot rituximab. another name: mabthera.
    good luck !
    I can't drive. they took my license when I went blind and I can't get it back. I will ask my doctor though. Thanks
    My blog: Animo

  8. #18
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    Quote Originally Posted by Barbara N View Post
    I can't drive. they took my license when I went blind and I can't get it back. I will ask my doctor though. Thanks
    Hi Barbara. sorry for my english - I meant ride (the horse) not drive....
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  9. #19
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    Thank you football lover, I also feel like I'm in a flare but just got labs back and rheumy dr.Says Lab is normal even Inflammatory marker is normal, but my liver function is elevated so md says I need to go to primary, who knows nothing about Wegeners. So frustrating, I have missed 2 days work and when I start walking feel the weakness I had when I got out of the hospital and my stomach is still acting up. I have felt close to normal for so long, it is hard to go backwards. I hate to hear about your response to Rituxin, I was encouraged when I read the response from Alysia, I am hoping I get a positive response for the treatment. I had similar response to cytotoxin, but I have had long term positive results from it. I hope my body responds well with little side effects. Did you do anything different prior to first dose? When do you take your second dose? Thank you again for your response. Marilyn

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