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Rank: Newbie
Groups: Registered
Joined: 12/6/2009
Posts: 8
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All the best for tomorrow Jenni, my turn for the Abatacept on Monday!
Liz t
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Rank: Advanced Member
Groups: Registered
Joined: 8/1/2010
Posts: 255
Location: hampshire
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Jennie - I will be thinking of you tomorrow. You are so positive -and set an example to us all. I don't post often but I often 'lurk' around the forum and have found your posts so useful. I hope that secretary and nurse are there for you tomorrow and sort out that scan. It is criminal that you are being messed around so. Love and hugs Sue 
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Rank: Advanced Member
Groups: Registered
Joined: 10/21/2010
Posts: 178
Location: aberdeen
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hello jenni
just to add my love and best wishes for tomorrow.
....eve xx
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hi Jenni
So sorry to hear the news again but I am glad you were able to share your thoughts with us all.
I will be thinking about you Jenni but you are stronge and you are so inspirational to us all.
Good luck and hear from you soon
Rose x
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Rank: Member
Groups: Registered
Joined: 12/4/2009
Posts: 10
Location: Kent
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Best of luck for tomorrow. I really hope you get your CT scan done while your in hospital. It's awful when they say there might be something wrong and take forever to get to the bottom of it. My son has some lung fibrosis, he has had lung disease since he was born. They diagnosed it on CT without a biopsy. He takes prophylactic strong antibiotics three days a week along with inhaled steroids and nebulizers. He is 18 and has a good quietly of life. Preventing infection is the key. I burn essential oils a lot throughout the house and this definitely keeps the bugs at bay. Wouldn't it be great if we could have a care co ordinator who sorted out all the multidisplinery teams no matter how many hospitals and doctors involved  I can dream! Take care, Roisin
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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 Thinking of you and hoping all goes well with the Abatacept. As the lung problems are clearly showing on X-Ray providing you get the 'promised' CT scan you shouldn't need a biopsy. They will only do this if absolutely necessary and a clear diagnosis cannot be made. Another battle you will win! Keep smiling, don't let the b*****s get you down. Lyn xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/13/2010 Posts: 118 Location: Shrivenham, Oxfordshire
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Hello Jenni
Thank you for being so honest. If you can't be honest on here where can you be honest. You have had a lot thrown at you. I am thinking of you today and I hope you get the best results possible.
Can I ask a question? What is systemic RA? When I saw my rheumy nurse a couple of weeks ago she said my RA was very systemic. It wasn't until I was driving home that I realised I didn't know what she meant.
Becky
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 838 Location: Nottinghamshire
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I've not been on the forum for a few days so apologies for the late reply.
Beings it's D day today I'm would imagine that you won't be reading this before you go.
I hope everything goes well for you over the next few days and you get your CT scan. They should not be allowed to mess you about like this.
I'm glad that you decided to let us know about things...........a problem shared is a problem halved goes into mind, but unfortunately it is not so with this.
But we are all thinking of you today and if all of our love and wishes could be put into a 'magic' pill to cure you, I'm sure that a miracle would happen.
Just sending you all my love and a big gentle hug.
Thinking of you
Paula xxxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Thinking of you today Jenni, hope all goes well for you.
Becky....RA is a systemic disease, which means it can affect not only the joints but other organs as well, eg skin, heart ,lungs, kidneys. That's why it's so important to get the disease under control with the drugs, to protect these organs as well as the joints. It is also the reason we often get the flu-like feelings, which does not happen with osteoarthritis.
Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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just to say also thinking of you today Jenni,
take care,
Suzanne x
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Rank: Advanced Member Groups: Registered
Joined: 12/13/2010 Posts: 118 Location: Shrivenham, Oxfordshire
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To Jenni
Sorry for hijacking your post.
To Doreen
That's what I thought so I didn't really understand why she was describing my RA as very systemic and what she meant by that. I noticed Jenni described her RA as very systemic too.
I will ask her next time I see her.
Becky
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Rank: Advanced Member Groups: Registered
Joined: 12/13/2010 Posts: 118 Location: Shrivenham, Oxfordshire
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Thank you Jenni - I've just seen your answer to my question in your 'how it is' post.
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