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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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It has not gone well. They tried twice the tingling tightness and Tongue swelling came. The hand and arm swelled. I can't have it again. Ra is systemic BUT there are sub types within ra like : sero positive, sero negative, non errosive, hormonally triggered, trauma induced, episodic, reactive ra amongst others. My rheumy says there are more than 200 types years ago they used to call ra part of gout. Then was par t of 'rheumatism' now it's ra. I have a particularly systemic version there are a few my consultant has met with very high ra markers and very low bone damage for the level of activity of ra suffered. I am being monitored here in hosp over night. Have asked re the ct scan and they hadn't ordered It so I'm glad I mentioned it. they have no record of it at all so will have to look at dray and make a 'clinical decision' Right now I'd like to show them exactly where to put their damn drugs...! how to be a velvet bulldoser
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Rank: Member
Groups: Registered
Joined: 12/4/2009
Posts: 10
Location: Kent
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Dear Jenni,
I am so sorry it didn' t go well. You must be feeling very deflated.
Have they any other plan of action?
Sending you lots of love and a gentle hug.
Roisin
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Jenni, I am sorry that things did not go well at the hospital today. Hope the x rays deal with the lung issue, however I wonder if there may be a chance of having a CT scan now, while you are in ( nothing like killing two birds with one stone ! ) I expect you have seen NICE have today approved the drug Golimumab, I wondered if this could be a possibility. I am crossing all my bits for you  You and all the family are in my thoughts, Julia xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 1,524 Location: W. Yorkshire
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 YES I'VE CHANGED, PAIN DOES THAT TO PEOPLE.
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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ohhhhhh Jenni,
really sorry to hear things didn't work out for you,
you will be in my thoughts,
sending ((((( Hugs )))))
Suzanne x
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Rank: Advanced Member  Groups: Registered
Joined: 12/13/2010 Posts: 118 Location: Shrivenham, Oxfordshire
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Oh Jenni - what can I say. I'm sending you gentle hugs.
Thanks for the explanation about systemic RA. That makes sense now. I have a high RA markers, have a lot of joint pain and suffer badly from fatigue but the last lot if X-rays showed little joint damage.
Take care of yourself and I really hope they find something for you.
Becky
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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 Jenni, so sorry it didn't work for you. Get this scan done!!! why are they not doing it, I don't understand it at all. Even if they can tell things from x rays, its not the same as having a full picture. I will be thinking of you and hoping you can get some positive feedback from tests BARBARA
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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So sorry Jenni.  Surely one day there will be a drug that you are not allergic to. Love, Doreen xx
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 336
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Dear Jenni,I'm so sorry that it didn't go well for you. 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 Been thinking about you all day and wondering how it was going. So sorry to hear about the problems you've encountered yet again. Hope you get a restful night and tomorrow you get some news about the scan. Hang on in there Jenni, Lyn x
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Oh Jennie
So sorry things did not go well. Thinking about you and hope you have a restful night
x
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Rank: Advanced Member  Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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Jenni poor you. So sorry that it hasn't worked again. You must be at your wits end. Try to be positive. Don't give up on your drugs, you need them and they will find something to suit you. Just hang on in. Hope your scan is soon. Lots of love and hugs
Sheila x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 838 Location: Nottinghamshire
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Hello Jenni
I've been thinking about you today and popped on before I go to bed to see if there is any news.............
Sadly not got news. I did read earlier about the new drug just approved by NICE and my thoughts immediately went to you.
Hope that tomorrow you get your CT scan, if they say no, kick up a fuss, refuse to go home, ring your local radio station up and get on air live to tell them whats happening, just do everything and anything that you can to make the sit up and take notice.....you deserve it.
Love Paula xxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 288 Location: LUTON
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Oh Jenni,
I am sorry things are not going so well, i hope they sort something out you have been through so much you deserve a break!
My love and warmest thoughts go to you and your family.
Anne-m xxxxx
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Rank: Advanced Member  Groups: Registered
Joined: 9/5/2010 Posts: 364 Location: mid glamorgan
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So sorry Jenni that you've had more disappointment! Really hope you get some answers today Re the CT scan and please dont give up there will WILL be a drug for you xxx
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Rank: Advanced Member
Groups: Registered
Joined: 10/21/2010
Posts: 178
Location: aberdeen
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hi jenni, I am so disappointed for you, I was thinking about you lots yesterday and willing it to go well. You seem to be a very determined young woman so deal with the things that you can control at the moment, get that CT scan done and get home to your family as soon as you can without compromising your health. I still have so much to learn about this disease and its treatment but understand that you have been given everything that has so far been approved in the UK. Are there other drugs out there that you can lobby for? I hope something turns up soon to help you.
.....eve xx
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Rank: Advanced Member  Groups: Registered
Joined: 11/20/2010 Posts: 244 Location: Cornwall
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Hi Jenni,
Left with the gnat's pee again then?! Hope you don't mind my flippancy, you know I'm a big softee really and always look for a joke in everything even the most tragic situation, strange coping strategy but there you go. Like others I was thinking about you too yesterday and hoping for the best. By the way, its lovely to have a photo of you on here, I have images of what people look like when there's no photo, a bit like listening to The Archers, and you look just as lovely as I imagined. Stay strong sweetie.
Sara
x
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Its gnats pee for me! lol... funnily enough I have started to think that I needed to think about those crack pot diets again!
I am home, very thankfully- we are going to a hotel together the 4 of us and I'm meeting with another charity CEO to set up Turquoise cross holiday breaks for respite for adoptive families.
I have got my fully hydromatic, systomatic and automatic powerchariot for heading across the lobby and this time it shouldnt cut out!
(will let you all know of any iffy outfits amongst the clientelle)
Before I left the municipal MASH unit- I got my CT scan arranged (the one the Dr Uphimself said had never been mentionned and needed a clinical decision and if it was that bad would have been ordered... of course one look at the xray and a nurse was handed the CT request with URGENT written all over it and dispatched down the corridor) and I'm going to see my consultant (hollow HA muffled in the background from Richard who holds out little hope!) for a "managed care plan".
Cant face the reality of what is happened to me right now so will put on some lipstick and ride off in triumph...how to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 12/19/2009 Posts: 182 Location: kilwinning north ayrshire
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hi jenni, just to let you know im thinking of you  keep smiling hen xxx sylvia xx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 838 Location: Nottinghamshire
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Oh Jenni
I've been thinking about you and how you got on.
I read your post smiling............in all of this you still haven't lost your sense of humour.
Chin up and keep smiling.
Hope something gets sorted soon.
Love Paula xx
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