Still improving - rituxamab : I surprised myself... - NRAS

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Still improving - rituxamab

Jackie1947 profile image
29 Replies

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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Jackie1947 profile image
Jackie1947
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29 Replies

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

sarah1967 profile image
sarah1967

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

Cathy777 profile image
Cathy777 in reply tosarah1967

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

sarah1967 profile image
sarah1967 in reply toCathy777

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

Jackie1947 profile image
Jackie1947 in reply tosarah1967

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.

sarah1967 profile image
sarah1967 in reply toCathy777

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

weymouth321 profile image
weymouth321 in reply toCathy777

Hi , Just started on Rituximab infusion ( these past 2 weeks ) , no reaction, speeded up drip , nurses fab , though, still having that fatigue - just like to ask whether you’re still having Rituximab infusions since starting it 3 years ago and how well its worked for you ?

Jackie1947 profile image
Jackie1947 in reply tosarah1967

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

Cathy777 profile image
Cathy777

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.......

Jackie1947 profile image
Jackie1947 in reply toCathy777

I've just replied to that question. Thanks

Cathy777 profile image
Cathy777 in reply toJackie1947

Cheers!

priss58 profile image
priss58

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!

Jackie1947 profile image
Jackie1947 in reply topriss58

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.

sylvi profile image
sylvi

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

Jackie1947 profile image
Jackie1947 in reply tosylvi

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

Harpey profile image
Harpey

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.

18446 profile image
18446

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.

hatshepsut profile image
hatshepsut

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

KaysDad profile image
KaysDad

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!

Jackie1947 profile image
Jackie1947 in reply toKaysDad

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.

rawillbebeaten profile image
rawillbebeaten

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

Jackie1947 profile image
Jackie1947 in reply torawillbebeaten

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!

rawillbebeaten profile image
rawillbebeaten in reply toJackie1947

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

GinaRoseD profile image
GinaRoseD

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.

Jackie1947 profile image
Jackie1947

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

MazP profile image
MazP

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

Crusee profile image
Crusee

Great news to hear of such good progress!

Just don't overdo it and set yourself back.

Crusee

XX

Jackie1947 profile image
Jackie1947

Yes it's easy to do that

CloudTreeDrive13 profile image
CloudTreeDrive13

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

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