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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 thought Id keep you up to date... Well Ive been signed off work again, I went back for 4 weeks and I was really struggling. I only work 3 days but even that seemed too much. I went to see my GP on Tuesday for a med review and she was shocked at how bad I was! All my joints are inflamed and its really difficult to walk. She gave me a paper for 6 weeks off work... I feel awful taking time off again but deep down I knew I shouldnt be in work just didnt want to give in  I am 6 weeks into the infliximab but so far hasnt made any difference at all, in fact I feel Im getting worse! GP says can take up to 12 weeks so im keeping my fingers crossed.. How long is normal to wait? Can it sometimes happen that anti tnf drugs dont work? Anyway any help and advice would be great.. Thanks love Ceri xx
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Ceri,
can't give you advice i'm afraid on the Anti-TNF as you know i'm still waiting to start on mine.
but i do understand how you are feeling, i am a year on and i feel some parts of me are struggling big time now, especially my left hand and wrist ( i am left handed ) i can hardly turn the tap without flinching. my Hubby has been home this week doing outside jobs, i.e. jet washing, painting etc. and i have struggled to even be tea lady let alone help him. i am fine in my own routine but not good when i step out of it.
make sure you rest up with your time off,
only thing comes to mind is can you contact Rheumy Nurse for a Depo injection..? when they work, they work well.
i was told we have to wait 12 weeks for Anti-TNF's to work ... so let's hope your one does help soon.
try not to get too downhearted about it, i am trying to keep positive and keep in mind what my lovely GP says to me when i see him, his words to me when i question it all is" but it is a controllable disease ".
we went out today and had a lovely lunch and i bought all my bedding plants .. so i do try and enjoy my days as much as i can.
anyway am warbling now,
just wanted to say thinking of you and keep your spirits up, and keep posting for support.
Suzanne x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
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Ceri
I am so sorry that you are struggling, and it is especially upsetting when you are trying to get back to work.
The bad news is yes you can fail on anti tnf's.
The GOOD news is you may need to wait a little longer for this one to kick in or there are other alternatives. Over a period of 12 months I tried two anti-tnfs but failed on both and am now moving onto something else. Unfortunately we are all different and what works for one doesn't work for another. I noticed as I logged in that NICE have just given approval for another anti-tnf so that makes five in total available on the market.
In the meantime I suggest you get some good pain medication and rest as much as possible whilst you are off work. Have you been offered or recently had a steroid injection? I am waiting for mine on Thursday and they do make a big difference. The are not a long-term solution but it would help you over this difficult flare.
If you don't feel any better in six weeks time start jumping up and down at your Rheumy team and get them to re-assess you.
Hope you start to feel a little better soon.
Jackie
xx
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Rank: Advanced Member  Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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Hi Ceri
Sorry you are struggling right now. I don't know anything about anti-TNFs yet so I can't give you any info but I do hope the infliximab starts to work for you soon. I know you don't want to be off work but it is an opportunity to build yourself up by relaxing and being away from work related stress for a while.
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 Infliximab was my first anti-tnf and it was a success for me, initially. I felt almost immediate benefit but would say it probably took the best part of three months for me to feel the full effects. Sorry to hear you feel as though you are getting worse but it is still early days. Infliximab lost it's efficacy after 12 months or so and I moved onto Enbrel which has been brilliant. We are all different with our own unique set of symptoms but do hang in there and try to stay positive. I'm not sure whether they would allow you to have a steroid jab whilst they are still assessing the efficacy of the anti-tnf, but always worth asking if things get very tough. Take care Ceri, Lyn x
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Rank: Advanced Member  Groups: Registered
Joined: 4/16/2011 Posts: 36 Location: Northumberland
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Hi Ceri, Sorry you are struggling. I was given this week off to try and get on top of my pain. My right wrist feels like it is rigid and unbelievably painful. I work with a mouse and computer all day so really difficult. I am not looking forward to going back on monday though as pain is no better. I know how you feel about being off work though. It scares me that there will come a point where they get rid of me..I have only had this one period off but I have only been diagnosed 6 weeks and treatment not starting anytime soon....scary really. Hope the pain improves soon. I am taking enough painkillers to kill a large dog at the moment! Not much happening to the pain though! 
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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iHello Ceri I so understand how you are feeling. However do listen to your GP and of course your body is telling you 'hey you can't keep abusing me at work'. I know I was off work 7 months last year after being a full time Manager and I now work 12 hours pw and that I find too much. I am still waiting to start Humira so cannot help you on that score. Keep chin up Rose 
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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 your replies, It really helps to know people care as some days it feels like I go 1 step forward and 2 back! I hope things go well for you Suzanne and Rose when you start your meds, I think we put so much faith in them and expect them to work wonders, I'll just have to be patient for a bit longer. Your right Lyn they wont give me a depo at the moment maybe when I have the next infusion in 7 weeks, Im pleased that it worked well for you even a year would be great! Thanks again xx 
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Ceri, sorry you are suffering. You're right it does seem unfair that you have to put up with this too, I don't blame you for feeling that its unfair. I hope you get good results from the biopsy, and that you will be feeling better soon x TRIED TO DELETE, THINK MY BRAIN FOG HAS GOT TO ME, SEEM TO HAVE ANSWERED WRONG POST!! SORRY (!!??) BARBARA
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