Date: 17.06.2011
From: nicci
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Subject: here we go again
Hi everyone, i hope you are all well. Just need an opinion on what you would in this situation. I was suffering with horrendous pain from Dec 10 and have been taking sulphasalasine, methotrexate, plaquenil and prednisilone. They have all taken a while to work and have only really a couple of good weeks since march. Anyway I started flaring again badly on Monday so upper my steroids which have done little. Went to gp yesterday and he said carry on what your doing and talk to me on Monday. Well its not working and my wrists and hands are so swollen and painful, they look like sausages. Also the balls of my feet are swollen too. It's the worst it has been I think. I can't drive, cannot pick up my baby who doesn't walk, lift the kettle, even get dressed. Basically can't do anything. It's my daughters birthday today and we are going to turkey on thursday. I really don't want to be feeling liked this and don't know what to do. Should I go to a and e? I'm not due to see my consultant til 30 august as they moved appointment and am at my wits end now. Thanks for reading x
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Date: 17.06.2011
From: Dilizjo
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Subject: Re: here we go again
HI Nicci and a big HUG Really sorry that you are having a rough time at the moment, if I were you I would phone my Rhummy nurse, mine have told me that if I experience a big flare up which you obviously are to get in touch with them straight away:)
keep us updated xx
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Date: 17.06.2011
From: marlene
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Subject: Re: here we go again
Nicci firstly let me say i am sending you get well wishes and love X. I agree phone your rhumy nurse. Tell them you are going away and you need some help urgently. Take care.
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Date: 17.06.2011
From: nicci
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Subject: Re: here we go again
Hi guys thanks for the replies. Well I got hold of the clinical nurse at my hospital and I have to go to the iv ward on Monday morning at 9.30 for steroid injection. Hopefully it will help until I get back xx
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Date: 17.06.2011
From: marlene
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Subject: Re: here we go again
OHHH brilliant, hope all goes well. Have a fab holiday.
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Date: 07.07.2011
From: Nicci
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Subject: Re: here we go again
Hi guys, well i had a fabulous holiday, it was sooo hot (51 degrees) i didnt want to come home. I had my injections on the monday before i went and they really didnt do anything which i knew they wouldnt, and when i got back from turkey the hospital phoned and got me an appointment for today. Well i went today and actually got a proper diagnosis of psoriatic arthritis (i knew it wasnt rheumatoid) and I am going onto anti-tnf as obviously the drugs i am on are not working. I have to go back on 25th August. so now there is some light at the end of this very long tunnel. Take care and hope you are all well x
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Date: 07.07.2011
From: kirst
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Subject: Re: here we go again
aawww i bet you are massively relived to have a propper diagnosis! :) Pleased they are putting you onto the anti-TNFs. Hope they start working and make a differance. x
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Date: 07.07.2011
From: nicci
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Subject: Re: here we go again
Thanks kirst, yeah its nice to know it has a name and after 10 years we know what it is. not sure when the new drugs will start, going to hospital to get all the info I think in august but not sure how long it all takes. hopefully by the end of the year ill be feeling better. sounds a long way off don't it x
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Date: 31.08.2011
From: Nicci
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Subject: Re: here we go again
Hi not been on for a while, have had about 4 weeks where i have felt somewhat "normal" which is good but now pain is starting to come back!! I had my appointment with the nurse on thursday and filled out all the forms for the anti TNF and have to choose between enbrel and humira. Have no idea which one to choose, im thinking humira though as it is only taken fortnightly. can anybody let me know which ones they find the best x
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Date: 08.09.2011
From: Tom H
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Subject: Re: here we go again
HI Nicci, Most feedback I have had is that Humira is generally best for PA, so thats what I've asked for.
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Date: 09.09.2011
From: nicci
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Subject: Re: here we go again
Hi tom, I asked for that today actually and as the injections are fortnight even better. Hope you get on ok with it.
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