Saying hi!

I'm new to this site, I'm looking to chat with other folks and to hear their experience of lupus.

I've had my first treatment of Rituximab in Dec and I'm still waiting for it to really kick in.

I am very weak and wobbly first thing though it improves after about 2 hours. Heat really messes with me and if I get too warm I turn to jelly.

I work in my retail store and ride my lovely horse Harley as often as I'm able.

I live with my amazing and long suffering partner and our two cats.

I would love to hear your experience and get a fresh point of view!

9 Replies

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  • Hi and welcome. You can go to my profile page to see all of my lupus issues and some photos of feeling good times also.

    Again welcome

    Tiras

    "The Barefoot Gardener"

  • Hello im Regina and i will soon be starting rituxan for my Lupus and i wanted to know how was your experience right now my lungs has gotton affected by lupus and my rheumatologist suggest i do the rituxan. You mentioned you felt wobbly how long did it take to finish and are you feeling some kind of relief and how often must you do the treatments.

  • Hi, I've only had one infusion but I think I have had some benefit. I'm told it hasn't kicked in yet - six months for real change. However, I think I'm a bit more able than I was. I'm told that I will have repeat treatment as needed and I think they sort of build as you get them.

    I hope it helps you.

  • Well that will be good if the one dose did it for you and as long as your energy level permits you to do what ever you desire then it was well worth it thanks for responding and best wishes with that let me know if you went in remission it sounds like you conquered it at the end we are all warriors.

  • Well I still have to pace myself but I feel more like myself. I hope you get a good result from it.

  • Yes my goal would to put it in remission and to get off oxygen tote it around can be very exhausting. So you made me feel hopeful thank you for that.

  • Oh I'm sure it will help you a lot. You won't know yourself once it kicks in. I had many days in hospital and totally incapable and on Sunday past I groomed, tacked and rode my horse by myself. I served some customers in my shop today - upstairs!

    So I know it will help you too!

    Let me know how you get on. X

  • Welcome Squeeker!

    Sounds like you have a the basics you need in life to be happy: an amazing partner, two cats and a horse!

    A good health always seemed a basic to me as well but after five years if being sick with continuously new life quality diminishing symptoms I set a new goal: to survive.

    Hope Rituximab kicks in.

    Greets,

    Patricia

    UCTD diagnosis for two years now but I strongly feel it is SLE

  • Hi

    Well, I am very grateful for all the positive things and I had not expected to be sick forever either. I know others are worse off and I'm doing all I can to be fitter and more able.

    Thanks for the chat I hope you keep well.

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