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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
just to say hello and I have popped back onto here today, I tend to do facebook more now tbh because things are tough!
I have been in hospital yet again, it seems I am increasingly allergic to the abatacept and there are now serious new problems too, the rheummy is lovely but in all honesty has no more options other than experimental ones.
it may well be we make the decision not to treat and do palliative care.
On the positive side the DFG building stuff STARTS THIS MONTH!
Hurrah!
I will be openly accessible 
lol
Much love to all,
Jenni xxhow to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hello you  We have missed you on here ! I m sorry to hear Jenni, about the issues with the abatacept giving rise to problems, it is such a shame as it started off well. I m sure your rheumy will work something out, and its good that in the meantime you will be getting so much support in all areas during this interim period. Pleased all the building work is now getting going, thats great news. Lots of best wishes Julia x
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Jenni,
really sorry to hear you're not doing as well on the abatacept as you were,
what a lot you have been through,
take care
Suzanne x
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Rank: Advanced Member  Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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Hi Jenni
I hope you get sorted out soon and start to feel better.
Sheila x
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Rank: Advanced Member
Groups: Registered
Joined: 10/21/2010
Posts: 178
Location: aberdeen
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Hi Jenni
so sorry to hear that you are having such a tough time at the moment with the treatment not going as well as hoped and we've missed you here. Sometimes it is enough to just get by, let alone share what little we are sometimes left with, with everybody else. Here's to better days ahead.
with love
.....eve xx
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Rank: Newbie
Groups: Registered
Joined: 12/6/2009
Posts: 8
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Good to hear from you again Jenni but so sorry to hear that things are so rough and tough for you. I hope you manage to get comfortable somehow or other. Good luck with the building works.
I just had the phone call today from the hospital to say that at long last funding has been approved by my PCT for Abatacept. It is one of the last drugs for me to try so I am wishing it does some good for me, but I am not holding my breath having tried so many already.
best wishes, Liz T
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Rank: Advanced Member Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Liz
Pleased to hear your news that at last you have the funding for this drug, wishing you all the best and so much hope this works for you.
Julia x
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 346
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Hi Jenni, Nice to see you on here, but sorry you have been poorly again.
Good luck with the building work, hope it all goes well and makes a big difference for you and your family.
Bevxx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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liz_t wrote:Good to hear from you again Jenni but so sorry to hear that things are so rough and tough for you. I hope you manage to get comfortable somehow or other. Good luck with the building works.
I just had the phone call today from the hospital to say that at long last funding has been approved by my PCT for Abatacept. It is one of the last drugs for me to try so I am wishing it does some good for me, but I am not holding my breath having tried so many already.
best wishes, Liz T
Liz- this is great for the abatacept. It took ages for funding here too.
I spoke to a lady through NRAS who took it for a few yrs on the trial and did well- really well
I found it effective within 2wks and it carried on working.
they have had really positive results and the eye watering complications on the other meds arent so prevalent on the literature on this one.
I liked that!
Its such a comfort to me to have someone else with severe rubbishy RA to chat to!
Can you find me on Fcebook and we can chat more?!
Jenni B-l on the NRAS page.
Jenni xx
how to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello
So sorry to hear Jenni that things are not too good for you at the moment
so very frustrating about this latest drug when it had been helping you. Have you
already stopped it.
You are a remarkable lady - take care Jenni. Great news about the the building
work.
Rose
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Jenni, been keeping up with developments on fb. Good luck with the building work, and I am sorry re the Abatacept. You are a very strong person and can always see the positive side of things. I hope you can work with your various doctors to find a way to support you medically,  BARBARA
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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 Lovely to see you back on the forum but sorry to hear things are going from bad to worse. I really hope there might be something in the pipeline that will offer an olive branch ... you are, to many, one inspirational lady. On a lighter note the building work is going to make a huge difference to you and your family so something to look forward to. Hope Michael's exams are going well and you have been able to sort a suitable college course for him; Louis has just ICT and German left to do and then a long summer holiday before college. Take care Jenni, Lyn xx
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Rank: Newbie
Groups: Registered
Joined: 12/6/2009
Posts: 8
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hello Jenni, thanks for your encouraging message. I don't "do" facebook, but am happy to chat by email if you would like. Is there some safe way of exchanging addresses?
Liz t
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