Today is the day :-)

Morning you lovely people

I'm having my first rituximab infusion this morning .Im really banking on this working as all else has failed .sulph, metho, hydox,Simponi biologic .

I have been off work for 5 months now after contracting shingles in March .The clock is ticking re work as its coming up to the 6 month timescale .I shan't be getting paid after this month and if I can't get this dreadful condition under control I know they will eventually terminate my contract .Thats pants ! 20 years doing the job I love I will have to do a hands up and admit defeat :-(

I'm 53 and feel I'm too young to not work .little did I know 2 years ago when first diagnosed I would be here so quickly ...in my denial I just thought I'd take a pill and I would be one of the lucky ones and life would be normal again and I wouldn't have to think about it .How naive was I ???

I know this drug works well with people that test positive ccp and RA so I'm really hopeful .Maybe just maybe I will get my life back :-)

Forever hopeful

Fiona

29 Replies

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  • Good luck!

  • Thank you x

  • Good luck but I'm sorry to say I found Rituximab took a few month to kick in but when I did it was great .

    Have you got a union etc to back you at work ?

  • Sorry it didn't work for you I know it might not work for me too but I'm really banking on it .Time will tell

    Unions don't seem to be able to do anything

    It's company policy and that's it

  • It did work for me , really well! But took a few months xx

  • Sorry getting you mixed up with somebody else

    Unfortunately I have'nt my got months to play with .My company did a u turn on alternative duties and are only prepared to offer a rehabilitation programe on the ground if I'm lucky for a few weeks

    Going to wait a week or so and get back to them :-)

  • Good luck sweetie , I hope it goes straight forward. One good think is you get a steroid infusion as part of the Rituximab protocol and I always feel better after that and that night but you more time ! Xx

  • Good Luck Fiona, let us know how it went?! 😊 X

  • Thank you :-)

  • Hope it goes well for you today.xxxx

  • Good luck Fiona. Hope it works for you.

    Beverley

  • Beverly I'm not sure if you are the lady I spoke to the other day I didn't get a name

    You guys gave invaluable support to me when I rang your helpline last week in a tearful state .thank you for that and I received the booklets on sat

    Fiona x

  • Hi Fiona,

    yes it was me. Glad that you found us helpful. I hope the booklets help you too. Good luck with everything and give us a call back if you need anymore help x

    Beverley

  • Thank you all for your support .

    I'm back home now feeling positive :-)

    It went well but took forever as my blood pressure kept dropping .

    I know it can take time to feel full effects but maybe it's my mind playing tricks but my hands are feeling good .Maybe that's yhe steroid they put in too .Tomorrow will tell .Hopefullu I can then go to my works health services with a view of rehabilitation plan .A timescale is what they want .

    Next infusion in 2 weeks

    Onwards and upwards as they say

  • Fabulous , glad it went well xx

  • I really hope rituximab works for you, Fiona.

    My RA story is some what parrell to yours, I am living through almost everything you wrote. As I too was diagnosed 2 years ago and thought a pill a day would control everything. I also have been off work for 6 months trying to get this dam disease under control. I am 50 years old, not financially secure to retire and I loved my job.

    We have to believe there is a drug out there to control this dang disease! Rituximab could be your chance. I will have my fingers crossed for you.

    Take care

    Sue

  • Oh Sue I feel for you I really do .Its a real bloody pain isn't it !!

    Like you I'm not really in a position to retire .I'm single so haven't got any partner support . Plus the fact I'm not ready to give up my old life just yet .

    What doesn't kill you just makes you stronger .thats my motto but have to admit I was in tears last week having a mini wobble .guess it just got all too much .Its just so frustrating not knowing which way my life was going ......will it work won't it ...what then ? Blah blah will I ever return to work .what if I'm not able to do my job ?

    I do have a wonderfully supportive sister she's my rock . she reminds me to take a deep breath .

    If it all goes wrong then sobeit I'll deal with that when it happens ....but for now I'm having a good day

    Chin up girl ! Tomorrow is another day :-)

  • Fiona RA is a pain in the arse!! I'm glad you have a supportive sister as I would be lost without my hubby.

    I too have a wooble now. Last night I went to the freezer for some ice cream. All of a sudden my ankle stiffened up. It felt like my right ankle had detached from my leg and foot. The pain was unbelievable. My husband came running and brought me to the couch. He asked me how I was doing. I told him the pain was gone. Then he stole my ice cream. Well I started to laugh. We both had a good belly laugh.

    James is able to help me not to go into panic mode. Strange things are happening to my body that my rheumy had perdicted to us. Hopefully the meds will kick in pretty soon.

    All the best to you

    Sue

  • That did make me smile ....bad James !!!

    Sometimes you so just have to laugh otherwise it consumes you .

  • Good luck Fiona. Really hoping this works for you x

  • Thanks Sheila fingers crossed :-)

  • Hi fifi

    I hope all goes well for you

  • Thank you fingers crossed .

  • You'll probably feel tired today, maybe didn't sleep so good after the steroid drip but hang on in there by tomorrow I usually feel better! Fingers crossed X

  • Thsnks ....yes didn't sleep that well have taken it easy today . Treated myself and went and got my nails done . I'm amazed that there is no real pain in my wrists and can move my fingers without any stiffness which is a first in nearly 5 months .im just praying it continues .early days I know .dont want to over do things .forever hopeful

    Fi

  • Sounds about right . I have a few sleepless nights but I just accept that and try not to stress about it as it passes. The stiffness improving will be probably be the steroid part and it's even better after the second part of the infusion in a fortnight ..... Brilliant!

  • Such positive results!!! You go girl!!! So happy for you!

  • Wishing you all the best. Am in a similar position. I had mine infusion end of may and am still waiting for it to kick in anytime soon hopefully. So am told fingers crossed. However had to have a top up steroid injection today to keep me going. I hope things went well today for. Gentle hugs. Sarah

  • I to had issues with work and the amount of time I've had off work and with operations 2005, 2010, 2011,2012, 2014,2015, then infusions. So I went back to work Feb this year on reduce hours until the statuary period. Then reduced my hours by doing half a day on weds. It made such a difference, it means I can get through the week and not be off. Maybe you could make so small adjustments that can help you? Also got advise from my union on how to handle work. For warned is for armed. Take care. Sarah. X

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