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Thread: First rituximab infusion

  1. #21
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    This is my second IV rituxan, I had the first one in June. I was suppose to get another one two weeks after that but there was some issues. I am feeling better and hope to be in remission by November. i didn't have any side effects from the rituxan. It's like I never had it. Note I have been on prednisone 40 mg since beginning of June and recently reduced to 30 mg. I've had this disease since I was a child, I'm thankful to be alive today.

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    Thanks for all your responses. It helps. I felt quite a bit better yesterday and did what I always do; too much, and not enough rest. I'm kind of nauseous today, so I'm sipping tea and chicken soup and taking it easy. I keep waking up really early and am unable to fall back asleep. I'm thinking it's from the extra doses of prednisone, and hoping it will subside soon. I will try to do some paperwork today that doesn't require much physical exertion. I get too depressed if I can't accomplish anything, but don't feel well enough to do housework. Maybe later. My parents come back today and will help with what they can. My kids are at their dad's until Wednesday, so I can keep resting before they come to me for five days. The freezer is stocked for when they're back. I'm feeling very fortunate to have such loving support, and an opportunity to achieve remission with this medication. I'm trying not to be impatient for it to take effect so I don't push myself too much.

    I very much appreciate all of the advice and support I'm getting here. Thank you!
    Just when the caterpillar thought the world was over, she became a butterfly.
    - English proverb.

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    Elephant, why has it taken so long for the doctors to give you Rituxan when you've had the disease since childhood? It seems like there is a lot of suffering, and potential damage, while Weggies have to 'fail' other medications and wait for approval for this one. I'm sure it's a common issue with many diseases and medications. It just seems inconscionable to me that this is the case. I wish the doctors and drug companies would make it available to everyone who needs it and recoup their costs / make their profit from the health care systems, insurers etc. Without making patients wait and suffer. I hope to do some writing about this issue when I have enough energy to take on more than my own life and responsibilities. Maybe I will start a new thread to ask about others' experiences in this regard. I've been asking for Rituxan for about two years before my rheumy decided it was time to apply because I've failed a second combination of meds. I've been ill and unable to work for seven years. It's affected my parenting, my marriage (doomed anyways but if I were less ill I would have had the energy and stronger self esteem to leave him sooner), every aspect of my life's. As I'm sure you all know. I can't really imagine a cancer patient being made to wait for chemo while they receive other less costly medications that are more toxic and less likely to help (although i may be ignorant and this likely does happen in some health care systems). I think once I feel well enough I would like to advocate for more timely and less costly access to the best medications for autoimmune disease patients. Especially children! We get one childhood (as far as we know for sure). No child should have to spend it feeling crappy and having their body destroyed from the inside out.

    Quote Originally Posted by elephant View Post
    This is my second IV rituxan, I had the first one in June. I was suppose to get another one two weeks after that but there was some issues. I am feeling better and hope to be in remission by November. i didn't have any side effects from the rituxan. It's like I never had it. Note I have been on prednisone 40 mg since beginning of June and recently reduced to 30 mg. I've had this disease since I was a child, I'm thankful to be alive today.
    Just when the caterpillar thought the world was over, she became a butterfly.
    - English proverb.

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    They gave me cytoxan at the children's hospital but it was too late it damaged my kidneys already and ended up with a kidney transplant many years later. My diagnosis back then was rheumatoid arthritis. Once I received my kidney I felt like a brand new person. At this tome doctors did not know what autoimmune disease I had but the immunosuppressant drugs kept the wegners some what quiet but I still had vague weird symptoms. Finally 2008 an allergist figured it out , I was flaring big time and ended up with four maxillary surgeries and lung nodule , which was removed to rule out cancer vs Wegners.
    I think there is some fear with the rheumatologist who are not experts in vasculitis administering rituxan because of risk of infection and side effects. I had wegners symptom before this recent one but all the specialist in my town kept saying I had infection or asthma. Lesson learned always communicate to the wegners granulamatosis (GPA) rheumatologist if you have any weird symptoms that won't go away. I really think my home town rheumatologist didn't think I needed rituxan and I wasn't too bad in her eyes. Frustrating but thankful I have an expert at Cleveland clinic that has been wonderful and helping me get back in remission . Sorry if I sound scatter brain.
    Lisa hope you start writing . You will get stronger, unfortunately this disease affects all family members.

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    Felt crummy all day again today. It's been six days since the infusion. I wonder whether I'm fighting a cold or flu; or perhaps it's from the withdrawal after two big doses of prednisone and benadryl due to a bit of reaction. Either way, hoping for a more energetic day soon. I try not to feel useless when all I can do is rest and the chores and paperwork and legal mess pile up untouched, but it's challenging. I should just be grateful that I'm getting the meds and hopefully will get better, and have patience to let it work. I'm just hard on myself about not getting anything done.
    Just when the caterpillar thought the world was over, she became a butterfly.
    - English proverb.

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    Beautiful Lisa, it makes sense that you still feel like you do. For me it also takes a week to "recover" from the IV. You also wasted some spoons the day before. So we allways "pay" at the day after.
    Just imagine what a battle is going on there right now inside your body. So just rest and let it heal. Dont push yourself. You are doing the most important thing by just resting.
    I would become worried only in cases of fever or rash or something unusual. Which I hope you dont have.

    How are you doing today ?

    I am going to get my rtx IV this wednesday so I will pay more attention how long it takes me to "recover" from the IV.

    elephant, your story sounds amazing. I am curious since what age you have became sick and how was it. Did you share your story here in the forum ? Would you like to share it ? I think it can encourage all of us and especially parents to kids with wg.
    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.

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    Thank you, Dear Alysia. I was getting concerned because from all the posts I've read, it sounds like most people feel better after a couple of days. I dont have rash or fever but I do have hot flashes. Those are normal for me but more frequent when I'm flaring or sick. Today i feel somewhat better. I woke up early and got a few things done and I'll try to ace myself so I don't overdue it. It's challenging because of course as soon as i have a bit of wnergy i want to catch up on all the things I've had to neglect, and don't know what to do first. I'm just glad I seem to be heading in a better direction. I hope your infusion goes well! Keep us posted, please. Xo
    Just when the caterpillar thought the world was over, she became a butterfly.
    - English proverb.

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    Lisa,
    Don't ever beat yourself up over not being able to accomplish what others seem to, after an infusion. We all have very different bodies and reactions to treatments. I have some kind of reaction to Rtx about every time, most not being really bad. I have had 20/infusions so far, I don't bounce back the next day, ever. I have also taken all the other available treatments and none of them worked to control my Wegs. I therefore have been on peds for over seven years and badly want off of them. I am wishing you all the best for a speedy remission. Just give yourself a break and rest when you feel like it and don't feel guilty for it. Please take care of yourself!
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


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    Default Exposure to illness after infusion

    Now I'm in a real pickle. My son is sick and supposed to come back to my house tomorrow. His evil soulless father is refusing to keep him (knowing the risk to me and that I can't be exposed). I don't have child care available for him and even if I Did, he would probably still come find me wherever I am. I don't know what choice I have but to wear a mask, wash my hands like crazy and pray for the best. How bad is it if I catch a cold? What else can I do? Has anyone had to be around someone sick after the infusion? Parents don't always have a choice. I'm not bouncing back yet a week after and I'm not sure what to do. Still sleeping half the day and all night. So I have a few hours of beingnup and about then back to bed. Can't believe his dad is such a vengeful #*}^<>|€* he's actually trying make me sicker. But that's another rant... just looking for any advice or guidance.
    Just when the caterpillar thought the world was over, she became a butterfly.
    - English proverb.

  18. #30
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    Since you seem to have no other options, a mask and hand sanitizer appear to be the way to go. I don't recall how old your son is, but I hope he can understand the need for no hugs or kisses. Try to conserve as much energy as you can.

    Any family or friends close (and understanding) enough to help?
    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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