Still improving - rituxamab

I surprised myself yesterday in that first time for a year I did some gardening. I can't tell you how great that was. Earlier in the day I went shopping to buy the plants followed by a supermarket shop. A couple of weeks back I couldn't have tackled one yet alone three jobs in one day. Rituxamab you have changed my life and long may it continue. The last year has been grim with pain and movement so for now I'm on cloud nine! I'll be seeing the rhuematigist in July and June the nurse specialist so it will be interesting to see my DAS score.

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28 Replies

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  • I'm so happy for you Jackie1947!!! Long may it last!!! Enjoy gardening :)

  • Wow am so happy for you . It's great to hear things like this thank you for sharing. Can I ask how long ago did you have the infusion and how many have you had? Am about to embark on this journey to as am having my first infusion on 27th may and then 11th June. Shall be interesting. Have a lovely day. Sarah. X

  • Hi Sarah I am having my first infusion of this on 1 June. I am nervous but hear a lot of positive things about it. 27th May! I will be thinking of you! Please try and let me know how it goes. XX

  • Hi thank you for your replies it's lovely to hear all these positive things being said. I was feeling rather nervous about it. Now am feeling happier. Not sure about the red face lol. Was you able to drive after the infusion? Am debating how to get to and from the hospital. Many thanks. Sarah. X

  • Hi. I didn't drive myself because my hands were and are a bit of a problem with swollen joints but I'm hoping they will improve given time. The lady next to me did drive herself. I found too I was a bit drowsy as you are given antihistamine tablet prior to infusion . I didn't feel any reaction and went out for a meal in the evening.

  • Hi Cathy 777, thanks for your reply and wishes. I will do. We shall compare notes and I wish you well to. Sarah. X

  • Hi. Thanks. I had my first ever infusion beginning of March followed by another two weeks later. I wasn't too optimistic having tried lots of pills but suddenly the improvement came. I was then anxious it was a five minute wonder but so good luck with yours. Let us know how it goes. I

  • That is so heartening to hear! I have my first infusion on 1 June so I am hoping I am one of the lucky ones who feel the benefits. I feel so lucky I have been given the chance of taking this drug. I too would like to know when and how many infusions you have had please. Enjoy the gardening! My garden is badly overgrown so if you have some spare time.......

  • I've just replied to that question. Thanks

  • Cheers!

  • My life totally changed with this drug, I felt like a new person! I've been taking it since 2009 and although I still worry about side effects, and in spite of my worry about heavy duty drugs in my body, it allows me to live a full life. I'm pleased for you. Don't overdo it though! You still need to look after yourself!

  • It's it great to say positive things and hopefully encourage others to try it if recommended. The way I look at it is if it wasn't this drug it would be a worry about another. Just want to live my life.

  • Getting into the garden so improves our health doesn't it. I hope you don't suffer too much today from your efforts of yesterday. Hugs from me.xxxx

  • I'm fine today thanks with a few more pots to do. My husband lifts them up onto a garden table so no lifting and bending. Lovely to have a bit of independence

  • I had my first infusion last Monday and felt a bit lethargic for a couple of days and then my mental 'fog' seemed to clear a bit. I probably overdid things over the next few days as I've now got a flare up in my hand 😔 and am waiting to hear back from the rheumy nurse to see what to do about the next infusion planned for this Monday coming. I'm still hopeful that all will be well though.

    I hope you continue with your progress as it gives us all hope to hear positive stories.

  • Hi Jackie,

    That's wonderful. How great it must feel. If you don't mind, I would like to cite your positive experience when I discus my let than effective drug regime my Rheumatologist next week. Long may your improvement continue.

  • That's great!! So pleased for you M xx

  • Had my first pair of infusions Oct 2006, second pair April 07 and the third Jan 08 which finally put me into remission. No painkillers, no anti inflammatories needed. Wonderful! It started to come backaround Dec 2014 but it wasn't until May 2015 that I me the criteria for retreatment, which I had in June 2015 - now back in remission (I hope). However, it does not work for everyone. The only side effect that I have had is flushing to he chest, neck and face the day after infusion. Happy to put up with that!

  • That's great news. It's early days for me but I've feel human again and looking forward rather than just getting through the day. I had a bright red face day after first infusion but I was ok. I

    Was advised to take a histamine tablet. I did look funny.

  • Hi Jackie, That's brilliant news, really, really pleased for you. My inflammatory levels have come down to normal, so Rituximab has had a good effect. I feel well, apart from burning pains in my feet and a stiff right ankle, I'm trying to stay positive and believe this will settle down, but it is testing my resolve. Have some reasonable nights sleep and some not, which doesn't help. But Hey, I'm at work and driving (with extreme concentration and very short distances) and it doesn't hurt any worse when I walk, so not all bad.

    Michele

  • Hi. Good news for you too with normal inflamition levels. I'm not 100% pain free

    but compared to a couple of weeks ago it's vast improvement. I hope to start driving a little but my hands aren't brilliant because mainly OA in the joints. I'm being grateful for small mercies!

  • Yes, small blessings and positive thoughts keep me going. My family, friends and work colleagues are great and very supportive, so I'm very lucky. Hope things keep improving and pain levels go down for you. Michele

  • How long have you been on rituxamab before feeling this good? I have had both loading doses. I'm feeling better but not nearly were I use to be.

  • My first ever infusions were March this year.The waiting time is two to four months before feeling any benefit . I'm feeling blessed.

  • Great news, always good to hear positive results enjoy the new freedom M x

  • Great news to hear of such good progress!

    Just don't overdo it and set yourself back.

    Crusee

    XX

  • Yes it's easy to do that

  • Great to hear you are doing so well. Long may it last, Remember to take care.

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