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Date: 20.08.2010
From: Abbie

Subject: Giving up on Ciclosporin

Hi guys!

I've been away for a while but haven't wanted to be. I started Ciclosporin and it is absolutely killing me. I'm asleep 15mins after I take it and I have to take it in the morning aswell as the evening which is hard. I have constant reflux and heart burn, headaches everyday, diarrhoea, mood swings and its affecting my vision. I'm seeing the GP tomorrow to say enough is enough. There's no point calling to sort it with my Rhuemy because you never get a call back and never speak to anyone who know's your case so figured my GP could deal withem for me Go love 'im. I never did hear back from the consultant about starting Remicade/infliximab as the mtx shots just aren't working and I can't live off steroids all my life. I'm giving it till Christmas then I am going to ask to get reffered elsewhere. anyway enough of my rant just thought i'd tough base, say Hi and fill you in. Hope to be in more contact again soon. Go Well XXX
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Date: 20.08.2010
From: Lynn B

Subject: Re: Giving up on Ciclosporin

Hi Abbie, Sounds like you have been through the mill hun, My GP wouldnt let me go on ciclosporin dont know if it was to do with the other meds I was on?.
Sounds like its doing you no good at all. Sorry your feeling so rotten ((((hugs))))Hope you start to feel a bit better soon Its nice to hear from you I was asking kayjay if you had all emigrated... take care.xx
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Date: 23.08.2010
From: Abbie

Subject: Re: Giving up on Ciclosporin

Hi Lynn! I saw GP and have stopped the Ciclosporin. I have to go back in 2wks If any symptoms still there. He's contactin Rheumy today to tell him and ask when I can start Infliximab/Remicade coz things are getting quite desperate. Hopefully i'll get some answers. Been in the system a year now and no further forward, gone back If anything. Just gotta nip out then I plan to plough through the posts I've missed. Hope you're doing ok. Go well X
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Date: 11.09.2010
From: Abbie

Subject: Re: Giving up on Ciclosporin

Been off Ciclosporin a few weeks now and side effects all gone. GP contacting Rheumy seemed to work recieved a letter today with an apt for weds :) Happy days! Hope you as well as can be expected X
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Date: 11.09.2010
From: Sally

Subject: Re: Giving up on Ciclosporin

Hi Abbie!! Good to hear from you. Glad you are feeling better and you've got an appt through :) I'm in a similarish boat to you, have had to stop the Mtx injections (well, only did one lol!) because I have been ill for past 3 weeks with serious chest infection and all kinds of stuff. Rheumy DID ring me back (bless him, he's lovely) but said Infliximab might not work for me as I am sero-negative. Also, said anti tnfs may not be suitable because of aforesaid respiratory probs. Like you am dependent on steroids which is not great. A year on them similar to you. He is bringing my appointment forward so will see what he has up his sleeve. Something I hope! I'm getting really fed up as hoped things would be better by now.

Look forward to hearing what your rheumy says on Wed.
love & hugs
xx
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