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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Hi everyone! It's me! Yes turning up like a bad penny... Got news to share... I've got a foot hold on the new JAK INHIBITOR DRUG on 'compassionate grounds' They tried several times before- its been a flat NO BUT not this time  Hospital saying its 'looking positive' It's my last hope drug wise I'm only on steroid ATM The disease, well, that progresses a pace how to be a velvet bulldoser
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 242
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Lovely to hear from you Jenni, I was thinking about you recently and wondering how you are.
What fantastic news about the JAK Inhibitor Drug, I've read quite a bit about it and it looks really promising.
Just hope it all goes through for you and you can start it soon. We will all be rooting for you.
Best wishes
Rebecca x
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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It's good news The nurse says its not a certain thing, but hopefully they should know before I see the consultant in mid July. I opted to have knee replacement no2 in September I have hideous pain in it now But I'm going to have a stab of steroids and hope for the best for the hols how to be a velvet bulldoser
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Rank: Advanced Member
Groups: Registered
Joined: 8/1/2010
Posts: 255
Location: hampshire
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Hi Jenni Fingers crossed for you.  Sue
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 561
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That's great news Jenni , really hope you get it and it works wonders for you Sophie x
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Rank: Advanced Member  Groups: Registered
Joined: 1/29/2010 Posts: 264
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Jenni that sounds brilliant , will keep fingers crossed for you , you so deserve it
Best wishes
Sheila
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Jenni,
always so positive .. will keep everything crossed that this is the one that will work it's magic for you,
no one more deserving,
Suzanne x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
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Jenny I am so pleased for you. I really hope they give you it on compassionate grounds. I have just read your link about it on the other site and it sounds very promising. Like you I have run the gauntlet of medication. I am on my third anti-tnf, Simponi but it is not working as well as it did and my Consultant did say last time that if this did not work then there are no more avenues to explore. Prayers are with you. By the way I LOVE the new carpets, especially the striped ones. It is not something I would ever thought about choosing but they look lush I am now craving a stripy carpet.  Take care Jackie xx
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Rank: Advanced Member  Groups: Registered
Joined: 5/2/2012 Posts: 670 Location: where the sun always shines :o
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Hiya Jenni Sounds amazing the new medication. Does that you will a new woman? It's good that your knee op is after your holidays and summer hols with the kids! Happy happy happy for you. Jane Xxxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Let's face it, Jen, it's about time someone did something to help you-Jackie seems in huge need of new treatment too. Prayers for you both and loads of love toox
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Wonderful news Jenni Thank goodness - sense prevails at last ! It may well give hope, like Jean says to people in Jackies's position too where the anti-tnf's haven t worked well at all. Julia x
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Rank: Advanced Member  Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
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That's great news Jenni. I know you've been really unfortunate in not being able to tolerate the first and second line drugs that most of us are able to benefit from. Any one of us could have been in your situation and it's nice to know that the powers that be are trying to help the more difficult cases as well as the mainstream ones. I've got everything crossed for you. I'd be so happy for you if you could give this a try and even happier of you could get some improved function and less pain. I know how hard you fight and how much of a struggle you have to go through with severe RA....but you do fight and you are a fantastic mum to boot....and you keep smiling and laughing despite it all. Good luck. You deserve this chance xxxxxx
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Rank: Advanced Member
Groups: Registered
Joined: 10/17/2011
Posts: 40
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Jenni I have only just come back to Nras and after reading your story I feel you have been very brave and very unlucky the front line pills did not happen for you, but you show the sprite that is needed!! Keep going you will get there in the end
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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So pleased for you Jenni, richly deserved.
Rose x
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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I think I've worked out this is drug treatment 18.... (Gulp!) Well jackie, there are ALWAYS new drugs coming along Even if there's a year or so on steroid etc inbetween There are options x how to be a velvet bulldoser
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