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Rank: Advanced Member  Groups: Registered
Joined: 9/5/2010 Posts: 364 Location: mid glamorgan
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Hi Everyone.
Well I had my first infusion of tociluzimab yesterday, all went ok except Im SO tired! Slept for 2 hours yesterday afternoon and still went to bed at 9. Today all Ive done is nod off also have terrible pain in lower back(!) Not sure if its from sitting too long in the hospital though.
Hope everyones having a good day and not in too much pain.
Love Ceri xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Hope it works for you, Ceri, and you soon feel less tired. Meanwhile be kind to yourself. Kathleen x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Glad it went well Ceri. Give in to the sleep for now, it could be your body's way of telling you to rest while the drug takes hold.
Doreen xx
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Rank: Advanced Member
Groups: Registered
Joined: 3/4/2010
Posts: 576
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Good to hear it went ok for you Ceri, but hope the wretched back pain eases. Not fair! I agree, sleep while it's what you feel you need to do. Hoping you soon feel better xx Ailsa
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Rank: Advanced Member  Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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Hi Ceri
Glad it went well for you. if you slept in a chair yesterday afternoon it might have been the position you were in that has caused the back pain. I hope so then it will go away soon.
Sheila x
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Ceri Fingers crossed for a good result. Hope your back is less painful today and you are feeling less tired. Lyn x
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Ceri,
glad all went well for you and let's hope this is the one to work for you.
agree with others, sleep if you feel you need it.
hope the back pain has eased up too.
Suzanne x
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Rank: Advanced Member Groups: Registered
Joined: 9/5/2010 Posts: 364 Location: mid glamorgan
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Thanks girls. The back pain is terrible today can hardly move so im going to ring rheummy nurse tomorrow, cant see how its related to the infusion but will check to be sure. Hope everyones had a restful weekend
Love Ceri xx
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Ceri
Good to hear all went well with the infusion, hope the back pain eases up for you, good idea to have a word with the nurse.
Keep us posted,
Julia xx
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Rank: Advanced Member Groups: Registered
Joined: 9/5/2010 Posts: 364 Location: mid glamorgan
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Hi Everyone
Just to let you know, I spoke to the nurse earlier and she thinks the pain is down to the RA, especially as my neck and shoulders have joined in now, she said its probably a flare and has suggested a short course of steroids (which im not really keen on). Also I have to go in later in the week for an iron infusion as my ferritin levels are very low. Anyone had this??
Thanks for your messages
Love Ceri xx
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Rank: Advanced Member  Groups: Registered
Joined: 6/18/2010 Posts: 351 Location: Herne Bay Kent
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Hi Ceri
Sorry you are having such a rough time of it at the moment. Hope the flare does not last too long and that the new treatment starts to kick in.
Best Wishes
Sue
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Rank: Advanced Member Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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Hi Ceri
If I were you I would jump at the chance of the steroid. They wouldn't offer it to you if they didn't think it was safe and you will feel so much better for Christmas. Thinking of you.
Sheila x
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Rank: Advanced Member Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Ceri,
sorry to hear you're having a rough time after the infusion,
i hope things settle down quickly for you and am sure like Sheila says hopefully the steroids will help you,
keep us updated .. thinking of you,
Suzanne x
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Ceri Do take the offer of steroids (even though it goes against the grain for me to say so!) they should help in the short term and not cause any long term problems if taken over the course of a few weeks. I had low ferritin levels throughout the summer and was put on high dose iron to sort the resulting anaemia. That too is due to the RA  Hope the infusion goes well and you start to feel much better soon. Lyn x
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