My Experience with Rituxan for Everyone to see

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Hi Guys,

I wanted to post my experience with Rituxan so everyone know what i went through. You can read another post of mine as to what symptoms i have. Basically Nasal and then hearing loss. Today 2/19/2016 went for one rituxan treatment. I was very nervous due to the side effects.

Basically started at 7:45 with some iv, some sterioid and then 8:45 is when they started my treamtment. They pumped based on my weight of about 174 lbs 760 mg of rituxan at the rate of 13 ml per hour. they increased the rate till 88 ml per hour. That is a really low dosage as per nurse and they go very slow. I told her there is no need to rush and i rather be safe.

There was heaviness in my head and some dizziness, but i drove back fine by myself and ate some and just went to bed. Really tired and slept for four hours. Overall so far so good. NO vomiting, itching, fevers, chills or anything.

Knock on wood. I go next week for second infusion and have two more after that.

I hope your experience is same as mine. Please share your thoughts and i pray with everyone that you feel good. This disease is very hidden and need to make it more visibile. The more educated you are the better the diagnosis and treament. 

If you have any questions, please don't hestitate to write and I will respond. The more informed you are the better choices you can make.

thanks

gucci

1 like, 11 replies

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11 Replies

  • Posted

    Glad you went through with it and I'm happy to hear your experiences.

    It's 2 weeks since my second infusion. Most side effects have abated and I'm finding things great.

    Keep us updated.

    Bella

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  • Posted

    I had this treatment in Demember 2015 and had no problems with it, It put me in remission but unfortunately the methotrexate I am on at the moment hasn't helped so I am due to have another boost off rituxan next week.

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    • Posted

      Hi JinFit,

      Did the doctor talk to you to about other medicines? How long after you were off Rituxan did you start Methotrexate, and how did it not help.  Was it right away, was your sedimentation rate high? Did your symptoms come back.

      Any insight would be helpful.

      Gucci

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    • Posted

      Hi Gucci

      Yes I have a list of them somewhere but going to see my Rheumatologist on Monday to discuss where we go from here.

      I started about methotrexate about 2 weeks after my iv and it was a low does of 15mg then we put it up last week to 20mg but I have noticed it is effecting my breathing.

      It is only this week that my wg has flaired up as I went straight into remission after my rituxan. I have looked it up and as I am new to this it does say it takes time to find the right drug and relapses are common in the first year.

      I knew it was back as I had felt better and was only having the symptoms of predison after the rituxan treatment. Then 2 weeks ago my nose starting bleeding, the night sweats came back and my ear (where the condition presented itself) started hurting, I was also feeling very weak and felt I was going to pass out and my vision started playing up.

      I hope this helps

      Jin

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    • Posted

      Thanks JinFit. This is good to know. What kind of symptoms did you have before you started Rituxan. Just trying to understand if your symptoms were mild before and did they come back strong after you took Rituxan and then methotrexate.

      Thanks

      Gucci

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    • Posted

      Before I was given rituxan I was in a really bad way it came to head with a very bad ear infection and by this point my immune system was in full swing of attacking itself, but everyone is different I haven't come across people who has had the same experience.

      The symptoms when they came back were mild but I then knew what they were as I had no idea before hand. I did research on whether you could relapse and it said the likely hood was high so I was very mindful of my body also I am watched very carefully by my rheumatologist. smile

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    • Posted

      I was on methotrexate for a bit cant take it way too fatigued. Not much difference for me from Rhituximab felt somewhat better after 3rd treatment but sleep such a challenge and really no difference after 4th treatment
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    • Posted

      Hi JinFit sorry havent been on forum for a while. I cant take methotrexate either I was so fatigued up to 72 hours after taking it. Thats odd I only noticed I delt somewhat better after 3rd treatment...otherwise totally exhausted. Now getting tear duct surgery soon and had sinus surgery in Nov 2015. Just curious did you have rituximab treatment 4 weeks in a row? I did and 600 mg each time. What dosage did you have? Are you still working? Ive been off work for months
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    • Posted

      Correction only felt somewhat better after 3rd treatment. Never wanted this treatment in 1st place told it made me worse and should of worked for WG
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  • Posted

    Dear Gucci

    I have GPA since Nov 2013 and have been through Rituximab on three occassion, your drowsiness is due to antihistamine, which they give you so redcue an allergic reaction along with the steroids.....

    i am currently on 10mg steroids, 150mg Imuran, calcium, Vit D, fosavance and crestor.

    I have not had a problem with it, hope this helps

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  • Posted

    I was lucky to have no side effects except fatigue.  The first go round was 1 day a week for 4 weeks.  However, after 6 months, I am still very symptomatic, so next month I will go back for another round using a higher dose, but only 1 day a week for 2 weeks.
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