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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,081
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I don't know if any of you will remember but when I went to a physio appointment last month I was having a flare and the physio got a doctor on the ward to see me. She said I shouldn't be flaring with the amount of meds I'm on and got a nurse to do an assessment for anti tnfs. I went to the second assessment appointment on Monday. It was a bit of a fiasco for the nurses in the the clinic as none of the events on the ward had been entered into my notes. They had all the blood tests on the computer system but the anti-tnf nurse I saw in March was away on honeymoon. The nurse agreed to do the assessment anyway and chase up the previous results later. I was a bit worried because I did have some hot and swollen joints but I was nowhere near as bad as I was about 3 weeks ago when I could barely walk. The gruesome lumps I have on my hand had even miraculously gone down (though still visible). Anyway, the nurse said she thought I would qualify and gave me all the patient info on Cimza, enbrel, humira and infliximab. She said that I could choose which one I wanted and she would check all the results and call me at home 'at the end of the week'. 4pm and no call - no messages on answerphone - I'll take this as a 'no' then  Miffed of Sheffield
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi "Miffed of Sheffield" I wouldn't take this as a "no", just that they have not put it in your notes that someone needs to call you. Just the normal service we have come to expect from our rheumatology departments (those of us who have one!). Give it till about next Wednesday and then ring them. Good luck with it. Doreen xx Disgruntled of Huddersfield (where there is no rheumatology department) 
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Hi, "Miffed of Sheffield"
I think "Disgruntled of Huddersfield" is right on this. There will just be a note asking someone to call you. Please don't give up hope yet. I've waited 3 weeks for a call to say my MTX is beng delivered and it still hasn't come!
Impatient of Timperley
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,081
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 Trust you ladies to make me giggle about it! Miffed
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Well I would hate to think you had given up hope Julie and are now scaling the outside of the Hallamshire trying to get your hands on some anti-tnfs for the weekend.
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi "Miffed of Sheffield" Sorry things seem to have reached a standstill for you but I too agree with "Disgruntled of Huddersfield" and "Impatient of Timperley". Patience required, wheels in Rheumatology (for those of us who have one, sorry Doreen!) grind very very slowly indeed. I'm quite sure the delay is nothing more than an oversight! Wonder whether it's a northern thing?  Exasperated in Thornton Cleveleys x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Hi "Miffed of Sheffield" I agree with abover comments. Its just they cant get their act together, how unusual!!! "Sick, tired,and p****d off of Rotherhithe"  BARBARA
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 216
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HUH......NO surprises here, Miffed.........................seems to happen all over the country. LOVE Wild in Worcestershire Always be aware that what you do might hurt others........and if it could, do nothing without careful consideration of the consequences
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 856
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And here too- went to get started on mtx today- having waited for an appt for 7 weeks to be told I can't start it til I've had more blood tests.
On a cheerful note though- hubby was with me in the waiting room, just come from work and was in his scruffy dirty work clothes. He'd fallen asleep and a passing nurse stared at him and asked if he was with me- she must have thought he'd come in off the street!!! I won't let him live that one down.
Hacked off of Hertford
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Not just a Northern thing then? I love that one Maria!
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Maria - that's wonderful. I can't stop laughing here! Thanks for cheering me up, girls!
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,081
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Patience is wearing a bit thin. Got through to anti TNF nurse last Thursday as they hadn't called me back. Said she would ring me back that day but didn't - Arthur went haywire over the weekend. I couldn't even hold a cup of tea on Saturday and my MIL - who is nearly 70 - came to do my ironing  I am off work again  and phoned the nurse again. They are still hunting for my first DAS score. The nurse who did it is back from honeymoon today so they might be able to find it. The nurse said that I qualify on my second score but she needs to check that the first one was high enough to be able to order the drugs. She asked me which one I would prefer so I said Humira. Also she will see my consultant tomorrow to see about a depo. Supposed to ring me back this afternoon - shall we see???? Still miffed of Sheffield. PS - I don't know how you would have gone on Impatient of Timperley and poor Disgruntled of Huddersfield wouldn't have had anyone to ask! 
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Miffed of Sheffield,
Sorry to hear you have still not got your humira!
Is it too much to expect them to realise that if your first DAS score hadn't been high enough they wouldn't have done the 2nd one?
No . Too simple.
I have actually been thinking of transferring to Sheffield as it's easier for me to get to than Halifax , don't think I'll bother now.
I hope they do ring you back this afternoon Julie.
Disgruntled of Huddersfield xx
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hi, I do feel for you and so sorry that your week end has been bad. I have everything crossed for you that that they rung you today Rose 
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Julie
Sorry to hear you have been so extra poorly over the weekend, hope you are a little better today.
Hope you hear from the hospital very soon, and can commence the treatment you very much deserve.
Julia xx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Really hoping you're feeling better now, Julie. Let's just hope Sheffield get their a**** into gear and sort this out.
Love Jeanxxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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Hi Julie,red faced mad lupie from london here. ohh how stupid of nurse you wouldnt not have ahd 2nd one das if 1st not high enough,sorry your being given run around and RA playing up,bles you hugs postive vibes from me for sucess re consultant an depo for you. lv melly cuddly cats make my world seem so much more fun
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,081
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Why do they have to give us such a run around red faced mad lupie from London? (At least I don't have anfected tooth like you - makes me cringe for you just thinking about it.) Got a call at 5pm - both DAS scores high enough to qualify for Humira - chest x-ray shows I have chest infection . (I actually knew this but didn't want to go to the doctor as didn't have a temperature and just didn't have the energy to take time out of work etc to get to yet another appointment.) TBH - think the infection might still be there but didn't say anything to the anti tnf nurse as I thought it would have cleared by now - I've had it since we came back from Scarborough just after Easter  . Anyway, she has left my notes for consultant to see when he is in again tomorrow. Has asked whether he thinks I need another chest x-ray or whether she can go ahead and order the Humira. Also asked him to consider a depo. She will call me tomorrow. Even if I have to have some antibiotics before can start - at least I know I qualify for the long term. Not So Miffed of Sheffield x PS Doreen - the nurses in Sheffield are fabulous once you actually get to speak to them - they just have far too much to do like most nurses. If you get your questions answered and have a good helpline available in Halifx - I would stick with it if I were you.
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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brill news then thats good,so heres postive vibes for no further chesty x ray and a depo to help out,hope you get chesty infection treated asap. . take care melly cuddly cats make my world seem so much more fun
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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That's great news Julie, that you can start humira but sorry about the chest infection.
I had to have a TB skin test before I started humira but I'm not sure if that is because I first started it in a trial.
I hope they ring you tomorrow as promised.
The nurse I have been seeing in Halifax is fantastic, she's as good as any consultant.
Apparently they have appointed a new consultant for Huddersfield and are training more nurses, it just takes time.
Let us know what happens tomorrow.
Love, Doreen xx
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