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Rank: Advanced Member  Groups: Registered
Joined: 9/5/2010 Posts: 364 Location: mid glamorgan
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 Hiya Everyone, So sorry have not been on for so long but to be honest I just havent felt like chatting about things.. Feeling more myself now though so thought Id catch up with you all (I have missed everyone). You may remember that the infliximab was not working for me, well that was stopped and then I had a major flare which is still not under control, I am due to start tocilizimab next Friday so fingers crossed that will help, I have finally told them in work I wont be going back after 6 months on the sick I needed to make a decision.. I felt relieved at first as deep down I knew I couldnt do the job anymore, but this week now I feel a bit down about it, had been there over 10 years so I suppose it was a big decision. I have popped on and kept up to date with you all pleased that Humira is working Suzanne, and everyone on Rituximab good luck! Welcome to everybody new and I feel better already for being back on here! Lots of love Ceri xxx
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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 that you have been having such a rough time of it lately. i do hope that the new treatment is more successful for you. It sounds like the decision not to go back to work has taken a weight of your shoulders. it is not easy to make these decisions but it gives you something less to have to worry about. Best Wishes Sue 
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Ceri,
good to hear from you .. i was wondering how you were.
i can understand how down you must be feeling to finally have to give up work, it is a massive change for anyone.
let's hope the Tocilizimab works well for you, it's a lot to deal with when changing drugs. you must keep us up to date with how you are doing we are all here to support you along the way.
i am due my 3 month follow up next week re Humira, and as you know i had a good result in the first month but i'm not sure i feel any improvement since then. so slightly anxious although i am not in a lot of pain and manage to do what i need. i rang my Rheumy Nurse after the second month bloods showed no real improvement from the first month and she has told me i have to give this a good 6 months, will report in next week.
keep your chin up Ceri, i will be thinking of you.
take care,
Suzanne x
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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 Lovely to see you posting, I wondered if you hadn t been too good and that was why you haven t been posting, very understandable, I remember you saying you were coming off infliximab, as it didn t work for me either. Sorry to hear that you have been having such a terrible time, however good to know that you are starting the new one very shortly, and hopefully you will soon start to turn the corner. Its good to have you back, I m sure you won t leave us again Julia xx
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Rank: Advanced Member  Groups: Registered
Joined: 11/26/2010 Posts: 71 Location: London
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Hi Ceri,
Sorry to hear you've had such a rough time of it. I hope our forum goings on keep you occupied while you get used to your new routine, sounds like a good thing though, stopping work. I'm sure you'll find all sorts of things to focus on and the enjoy rest!
Good luck starting the new meds (I'm not going to try to spell it!)
Vicky xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Ceri,
Good to hear from you but sorry to hear things have been so bad .
Good luck with the new drug on Friday, hope it works well for you.
Love Doreen xx
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Rank: Advanced Member
Groups: Registered
Joined: 3/4/2010
Posts: 576
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Hi Ceri - nice to hear from you again, but sorry you have had a rough time. Hope the new meds and quieter pace of life will soon have you feeling lots better. try to think of the things you really wanted to do and couldn't when you were at work.
Thinking of you xx Ailsa
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Ceri,
Missed your posts so nice to hear from you. Sorry that you had to stop influx. I hope you
manage to start the new drug soon and that you will get better results. Perhaps without
the pressure of work may be the answer. I am one 'the ones' on rituximab and am still
waiting for it to work, these last few days have been bad and in a lot of pain - so fingers
crossed.
Keep posting Rose x
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Rank: Advanced Member  Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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Hi Ceri
It's good to see you posting again. Sorry you haven't been too good for a while but I hope the new drug works well for you.
Sheila x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Hello and welcome back
hang on
siknfaoenbae9ofbgpedvcvba ancxnnnnnnnnnnnnnniafds
Bernice is typing her own messsage and the anvca;iefubv cat is now nad7ufjnnnnn having a go!
lfovknaccccccccccc
tee hee
welcome again- hope you do great on the toci!
Jenni xxhow to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Hi Ceri, Sorry things have not been so good for you, but good luck with the new drug - let`s hope this is the one for you. Take care, Kathleen 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 for all your messages, especially Bernice and Kipper Rose, I hope the Ritux starts to work soon everything takes so long just to make a little bit of difference! Suzanne, hopefully the Humira is building up in your system and will kick in soon. Julia. What are you taking now? Its lovely to be back in touch with you all again Love Ceri xx
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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 Good to see you posting again  but sorry to hear of the difficulties you have been facing. I hope things work well with the Tocilizumab; that's the drug I really wanted next but I had to follow 'guidelines' and go with Rituximab first  , had I still been sero-negative I could have skipped the Ritux!! But heyho, who knows ... Ritux might even work! Just the thought of depleting the B cells concerns me, seems very 'unnatural'! There are 10 people on Tocilizumab at my hospital and they have seem some really good results. Fingers crossed for you. Keep posting Lyn x
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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 have you back I started on Cimzia at the end of July, I haven t had any side effects and almost immediately had so much more energy it was absolutely amazing, the awful pain in shoulders and arms subsided a lot. As I was still getting pain in the muscles in my arms I started taking amitriptyline which I felt helped. Its been up and down and sometimes I ve had spells where I thought I was going backwards however after about twelve weeks it really kicked in and over the last week has improved even more. I find I get very stiff sitting still and walk like a ninety old til I get going but a small price to pay to be out of that pain. I stopped taking diclofenac 75mg twice a day but need it one dose otherwise I get very achy wrists and elbows  Oh, I m still taking the mtx. at 20mg for the time being. Having found that leflunomide, methotrexate, plaquenil and infliximab had no effect on the RA you doubt whether anything will work, so you just have to remember ts just a question of time before you get onto the right drug, its a terrible waiting game though. Fortunately there are new drugs coming out all the time which is good news too. Really hope Ritiximab works for you. Love Julia x
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Rank: Advanced Member Groups: Registered
Joined: 9/5/2010 Posts: 364 Location: mid glamorgan
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Thanks for the positive news about the tocilizimab Lyn really hope its the right one for me and hope the Ritux kicks in for you soon!
Julia it def sounds like the Cimzia is controlling things a bit..I think any improvement is good! Been up all night again with sore shoulders so sympathise with you there. At least I dont have to go to work so thats something.
Love Ceri x
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Rank: Advanced Member
Groups: Registered
Joined: 4/20/2010
Posts: 153
Location: Kent
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Hi Ceri Sorry to hear things have not been good for you. Best wishes and good luck with the new drug. Love Lou x I love people who can make you smile even when you do not feel like smiling. x
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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
Thats the thing, you can at least now just be at home and rest for as long as you like in the day to recover from awful shoulder pain in the night. I have gone on about it in the past but I really found the RED pot ( not the white one ) of Tiger Balm really soothed my shoulders when massaged in well. It really smells and can mark your nightwear but for me helped a lot, along side strong pain killers, even soaking my arms and hands in very warm water, through the night, calmed the pain down too.
Crossing everything for you Ceri, hoping that the new meditation will work for you.
Love Julia xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 346
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Hi Ceri welcome back to the forum. I understand about not always feeling like coming on here i sometimes feel like that when i have alot going on at home. Hope you feel better soon about giving up work, it is a big decision and left me feeling lost for a good while. I took ill health retirement eight years ago at 46.
Good luck with the toxilumab i hope it works for you.
Bevxx
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