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Rank: Advanced Member  Groups: Registered
Joined: 12/8/2009 Posts: 124 Location: Wolverhampton
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Well saw my rheumy today first time in about six months and he had a couple of students from Birmingham Uni with him. So for sake of the students, I was rediagnosed, and I told them about additional problems I've been having with joints etc. It appears that I now also have Raynaud's Phenonemon (apparently quite common with RA) although he couldn't tell me why I get spasms (cramp like) in both hands on a regular basis. He checked all my inflammed joints and told me that ESR had gone up to 41 and CRP is 15 - CRP now higher than when I first started getting my bloods monitored (last May). My DAS in March 2009 was 7.91 and now after nine months of methotrexate/prednisolene is 7.48 - his verdict: Mtx not working for me. However, he is recommending me for anti TNF drug therapy. I have to have another assessment which will probably be around March/April time, and if DAS is at similar level, then they will apply for me to have anti TNF. I feel really positive with the outcome of this appt, although I know I will have to wait some time now before PCT approve the new regime. Take care all, Nina xxxx
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Rank: Advanced Member
Groups: Registered
Joined: 12/7/2009 Posts: 176
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And how lovely that you are being looked after so well. Good luck with the new stuff.
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Nina,
That's great news about the anti-tnf! Hope it's not long before you get onto it.
Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 1/7/2010 Posts: 441 Location: Bristol
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Hi Nina,
Glad you had such a positive appointment. Sorry you haven't had much success with the methotrexate ... hope you get your anti-TNF's soon!
joanna
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
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Nina I was interested to read your post. I am glad to hear that you had a successful appointment with your Consultant. I too have failed on Methotrexate and Leflumonide. You are on the same track as me. I am also waiting for the funding to be approved by the PCT, although I have been told that in Shropshire funding has never been refused. But then again there is always the first time. I was wondering if the approval by NICE of the new drug Cimzia may help us quicker as they have agreed with the drug company supplying this that the first 12 weeks will be free of charge. I keep on telling people that it is good news that my health has deteriorated so that I can go onto Anti-TNF's and they look at me as if I am mad I hope you get your approval soon and that your health starts to improve. Jackie xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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Thats a good appointment nina so pleased for you re anti tnf,im also failing on mtx. how did u feel re students in with u re diagnsoe. muhc 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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Good news Nina - glad it went well.
Julie
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Glad you got good news, Nina - hope you don`t wait long for the anti-TNF. Kathleen x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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pleased it went well for you and hope the Anti- Tnf is not too long a wait.
Enbrel made a big difference when I took it and really had my best 3 yrs on it.
Jenni xhow to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 690
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Hi Nina,
This is great news, I was on MTX although it worked for me I had to come off of it because my liver couldn't cope. I started Humira this week and keeping my fingers crossed that it's going to work, and hope that when you start ANTI TNF treatment it will work for you. I've heard that it can be quite life changing and that people have been able to resume a normal life again.
Good luck,
Love,
Barbara XXXXXX
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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Dear Nina (my scrabble friend! LOL),
That was a promising outcome and I am glad you feel encouraged by it.
Much love,
Amanda
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009 Posts: 854
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Better news from a treatment level Nina.
Eleanor x
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Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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I'm so pleased you are getting such thorough treatment, Nina. Are you having some meds for the Raynaud's or are they just going to wait and see for the time being? Love Jeanxxx
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Rank: Advanced Member  Groups: Registered
Joined: 1/5/2010 Posts: 89 Location: Mereworth, Kent
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Brilliant news! ( I know what you mean - bad news is good news!) There aeem to be a few of starting ant- TNF's at the moment. I have my first jab on Tuesday. Time from my second assessment to Humira arriving was 10 days - I was surprised it happened so quickly, so maybe you won't have much longer to wait Take care Alison xxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/8/2009 Posts: 124 Location: Wolverhampton
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Thank you all for your very kind words.
Jean - no new meds for Raynauds guess we'll just see what happens there.
Alison - best of luck on Tuesday. Ten days is quick, hope Wolverhampton are just as quick!
Melly - sorry haven't been in touch for ages. Didn't bother me that students were there, they were very sympathetic and the girl had tears in her eyes when my joints were being tested and I was crying in pain. The lad stood up and opened the door for me when I was leaving. They had manners and were polite. Sorry to hear mtx has failed for you too. You are having such a rough time with all this. What's next for you?
Barbara - hope the humira changes life for the better - that is what we all want!
Jackie - have my fingers crossed (metaphorically of course lol) that you get the funding approved. Where do you live? I am in Wolverhampton.
Have fallen over this morning (silly incident with a toy lorry) and landed on my bad knee which is now all puffy so housework on back burner again although David has helped with some of the chores.
Take care all, Nina xxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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aww hugs t care sorry u fell over sounds ore,yes no chores rest up. i pm u hun t care now lv melly cuddly cats make my world seem so much more fun
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