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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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hi all
here again (5th time this yr).
no drug options, cimzia gone dramatically wrong. neuro issues again as have had with 3 biologics now.
is there a life to be had with no drugs and very severe ra?
ideas?
love to all my old friends on here and sorry to the new ones- this is one of the few places i can try and talk through this stuff.
jennihow to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 3/8/2010 Posts: 914
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Hi Jenni,
So sorry to hear you are back in hospital, you were doing so well on the new drug you were on. I hope a magic cure is found soon to help us all. Hope you are not in hospital too long. Thinking about you, Lorna x
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Rank: Advanced Member
Groups: Registered
Joined: 3/4/2010 Posts: 576
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So sorry to hear you are back in hospital Jenni. It seems so unfair. Just wanted to say thinking of you and send you hugs. Are you in for treatment/obs/rest or what? Just wondering what the plan is.
Take care and post when you can XX Ailsa
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Rank: Advanced Member  Groups: Registered
Joined: 12/7/2009 Posts: 96 Location: Buckinghamshire
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Jenni, so sorry to hear things have taken a turn for the worse again. Thinking of you. x
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Dear Jenni, So sorry to hear you are in Hospital again. What a dreadful shame. I really do hope they get to the bottom of it for you and get you sorted. Thinking of you. Rose
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Rank: Advanced Member
Groups: Registered
Joined: 12/7/2009 Posts: 176
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Oh, Heavens to Betsy! I look forward to hearing what they are going to do next. Which Hosp are you in? or more to the point, how far from the family?
It sounds 'off the topic', but a friend has just bought a 'Kindle' and has found it a boon - new books available that she hasn't read. No problem reading in the dark, as it it backlit, and if it can be put in the right place, you only need to use one finger to 'turn the page'. (With only one arm, she loves it).
I hope to hear you are back home soon.
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Jenni,
just wanted to say so sorry you are in Hospital and in severe pain.
hope they get this dreaded RA under control for you.
take good care,
Suzanne
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 838 Location: Nottinghamshire
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Hello Jenni
I read your recent post on your wonky warrior blog last night, my heart goes out to you. Just pleased to see that even after all thats been thrown at you you've still got your wonderful sense of humour. '
I really thought that the new drug cimzia was the one for you, at last you seemed to have found the right one after your first response to it, it's so terrible that it's gone so wrong for you.
Fingers, toes and everything else crossed that something can be found to help.
Sending you love
Paula x x x
P. S. Say hello to Mrs Beanie and Mrs Tattoo from me, your in house entertainment duo. Not forgetting Sister Pocket Rocket as well.
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Hi Jenni, I`ve been keeping up with your "adventures" on Facebook, and hope very much that you are home soon, where there are no nutties in the next beds. Take care, Kathleen x
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Rank: Advanced Member  Groups: Registered
Joined: 12/6/2009 Posts: 177
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Hi Jenni So sorry that you are back in hospital. I hope they sort you out soon. It must be so distressing for you and your family.
Love and hugs and i'll be thinking about you.
Love Shirley 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 Jenni There's just no way of keeping you out of these places is there? Seriously Jenni, so sorry to hear the latest problems but hopefully this spell in hospital might provide some answers. Jean updated me last week but clearly my knowledge has been overtaken by events  I can't imagine a life with RA and without drugs and would hate to think that's it. I suppose that's the one thing about this wretched disease that concerns me most. All I had for 6 weeks during a 'pre/post operative' period was 3mg of prednisolone ... I ended up in a very bad way and know for sure that whilst the disease might have been slowed down by the Biologic treatments it most certainly has not stopped its rampage. I honestly cannot imagine surviving without the drugs. I feel for you and your family at this difficult time Jenni. Do keep posting with an update, love to hear how you are doing. Hope the children are okay  Lyn xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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little update, Just to say that the rheumatologist has been in, there is a drug option left called ABATACEPT. Know nothing about it, only that the rheummy has applied for funding. He has not given up. In the meantime- I am waiting for discharge from hosp having seen the ENT surgeon about lack of swallowing. i need to see the neuro will be in touch Jenni how to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 157 Location: TYNE AND WEAR
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Fingers crossed for you Jenni, praying for you always, Much love, Alison XXX
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Take care Jennie
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Rank: Member
Groups: Registered
Joined: 2/11/2010 Posts: 19 Location: chepstow wales
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dear Jennie YOU DONT KNOW ME BUT HAVE FOLLOWED EVERY ONE FOR PAST YEAR ALWAYS INTENDING TO JOIN YOU ALL I AM SO SORRY TO HEAR YOUR NEWS ON LATEST DRUG I DO KNOW HOW YOU FEEL!! I HAVE TRIED MOST RA DRUGS OVER THE LAST 7 YEARS THE LAST BEING EMBREL TWICE, ALL OF THEM WITH BAD RESULTS AND ALTHOUGH MY RHEUMATOLOGIST SAYS NOT TO GIVE UP THERE ARE OTHERS SHE IS VERY UNDERSTANDING AT MY BEING AFRAID TO TRY OTHERS!!! WHEN YOU HAVE BEEN WHERE WE HAVE WONDERING IF YOU WILL EVEN PULL THROUGH IT IS VERY SCARY BUT WE ARE THE UNLUCKY ONES AND HOPEFULLY THE VERY FEW, IAM ON 10MG PREDNISOLONE AND HAVE BEEN FOR 7YRS OFTEN HAVING TO INCREASE WHEN THINGS GET REALLY UNBEARABLE PLUS I TAKE CO-PROXAMOL. I WISH I COULD MAJIC YOUR PAIN AWAY JENNIE BUT I CANNOT, I DO KNOW YOU ARE STRONG AND HAVE MANY GOOD FRIENDS TAKE CARE THINKING OF YOU KATE A BIG HUG.
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Rank: Advanced Member
Groups: Registered
Joined: 12/8/2009 Posts: 35
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Dear Jenni, I don't get onto the forum much these days but when I do I always check on your progress so am really sorry to hear that you have ended up in hospital again and running out of options. Lets hope the Abatacept is the miracle you deserve. Thinking of you. Jo
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Jenni
Just caught up with post, and so pleased with your news. I stumbled on this one the other day on the American site Drugs.com and saw it under Orencia. I wondered if it a new drug to reach us here.
In my thoughts, Julia xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 856
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Love and prayers Jenni
Maria x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Thanks all, I have come home today!
Really lovely to be home, need to see the neuro consultant for some questions that need answering
sometimes there are no easy answers.
love
Jenni xhow to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 263
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So pleased you are home Jenny. I hope you are soon feeling much better. Kathleen Mc. x
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