Is It Me Or Today's Society

Hey guys

I just wanted to share with you guys that have me appointment for my first Rituximab Infusion next week.

And the first thing I randomly thought was dose the Kings College Chemotherapy Day Unit have free Wifi

I don’t know if that says something about me or today’s society

God forbid I go a day without internet to better my health

If any one has had a Rituximab Infusion tips or advice would greatly appreciated

7 Replies

  • You don't say what's wrong with personally I wouldn't gave chemo unless I had cancer if you have cancer I am very sorry

  • Quite a lot of the drugs that are given for lupus are mild form of chemotherapy. I had Cyclophosphamide and had to go to the chemo day unit to have it administered.

  • HI, Hope it will go well for you. I have Mixed Connective Tissue Disorder and my consultant have tried several times to get Rituximab for me because of the damage to my lungs (Pulmonary Fibrosis). I have even went to see my local MP who decided not to appeal on my behalf.

    Could you please let me know your diagnosis and was it easy for you to get this drug.

    You will be quite bored if you have to be on the chemo ward for a few hours so I think that's why they are providing free Wifi.

    Praying all goes well


  • I suffer with Lupus, Connective Tissue Disease, Myositis, and a few other names I can pronounce.

    I was referred by my rheumatologist I’m not too sure what the decision process was though.

    I’m sorry to hear that you are having problems

  • Hi I have been having rituximab every six months for about 7 years now,I also have Cyclophosamide.I have the rituximab,then the next day Cyclophosamide then rituximab again two weeks later.

    I don't get any side effects from the rituximab apart from tiredness and a bit of a funny head,the Cyclophosamide however is a different story.

    Along with all the tablets I take,this treatment is what keeps the lupus sort of under control.

    Just before I started the treatment the rashes on my body were horrendous,I could not use my hands as they were so sore and painful.The rash was also on my chest and back,my partner wasvputting on a whole tube of steroid cream a day just to cover everywhere.

    It doesn't really help a lot with my joints though,only a little.A few weeks before I am due to have it again everything does flare up really bad again and I feel terrible,which is a pain as it takes nearly three months before I notice a difference.

    The drowsiness you may get is because they give you piriton,they do me anyway.

    The first time it is given they will put it through at a slow rate to make sure you don't have a reaction.

    With me I am checked every half hour,blood pressure,temperature and asked if I feel ok.Each time the speed is gradually increased.

  • Going through the infusions was hell. I didn't react well to the drug at all. My infusions would take 9+ hours because they had to do it so slowly.

    Having said all that though ... I'm so glad I did it. It took about 10 weeks but I finally started feeling better. I've been pain free for about 6 weeks now!!! I'm still struggling with fatigue, but I do have a little more energy. I also have more interest in doing things.

    About 3 weeks after the infusions I developed severe pleurisy (lupus induced, no infection). I also now have severe sinusitis and throat infection that won't go away. You do become more susceptible to infection.

    It doesn't work for everyone, but do it.

    Take things to distract you. I took movies on my iPad. Most days I didn't watch them because either I was feeling too sick, or because I was talking to other people.

    Good luck

  • I now have a regular infusion of rituximab and friends can now tell when I am due the next one. I have never had any adverse reaction to the infusion and can now go long periods without major flares and what i call Lupus joint pain. I do get side effects but honestly I am nearly70 years old and it might not be Lupus just getting older.

    Good luck with the infusion it was the best thing that ever happened to me


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