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Date: 14.09.2012
From: rhona

Subject: new thread for Deborah

Hi Deborah, You haven't been on in a while and i was wondering how you were doing. I remember you said you were starting an anti-tnf in september. Hope you are doing well on it if you have started it. I have the hospital in 2 weeks to see whats next take care xx
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Date: 15.09.2012
From: Deborah

Subject: Re: new thread for Deborah

Hi Rhona,
How are you at the moment?
It's good to hear from you.
Would you believe it I am still waiting to get started on the new drug the nurse at the hospital said that the company who supplies it has been trying to get in contact with me but they keep getting some foreign girl who does not speak any English but have gave them all the number's I have so just have to wait, it wouldn't be me unless there was some sort of disaster ha ha...
Although to be honest I feel I really need it between bad back,headache and generally feeling unwell I know the mtx has run it's course and feel as if I am not taking any drug's at the mo.
The new drug is called Golimumab have you heard of it? Apparently it is quite good with pa so will let you know how it goes.
Rhona thank's for taking the time to ask about me.
Noticed you said you have to go back to the hospital hope you are alright hope your drug's are still helping a bit.
Keep well this weather is driving us all mad it's so changeable.
XX Deborah..
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Date: 15.09.2012
From: rhona

Subject: Re: new thread for Deborah

Hi Deborah, Good to hear from you too. That is good that you will be starting something soon, i do hope it helps you. I have never heard of Golimimab but there are so many different drugs now. Hopefully it will make you feel a new woman.

I feel exactly the same about the MTX i don't thing it does anything for me but they keep telling me to continue with it. I also started Rituximab about 3 months ago, it has helped with some of the pain but my hands are really sore and i can see changes in the shape starting an my feet are sore so i hope they may give me something different.

The weather here in Scotland has been dreadful, we have had no summer at all, i think it's rained almost every day.

Let us know how you get on with the new drug, i really hope it helps you.

Take care,
Rhona xx
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Date: 15.09.2012
From: Deborah

Subject: Re: new thread for Deborah

Hi Rhona,
I don't think these new drug's are as good as people would say they are,they are not the cure they were made out to be, but I think that if they help in some way it's better than nothing.

I hope Rhona they can maybe find something else that will help with the pain's in your hand's and feet I think you may need to change to another form of anti tnf, isn't these disease's so defiant.

The one they are starting me on has 70% success rate for pa patient's.
So what they are doing is keeping me on it along with mtx 25mg for three month's if no improvement they will try a different one so finger's crossed.

You mentioned the weather in Scotland,my Grandmother was from Scotland we live up close to the north coast of Northern Ireland not far from Portrush (although I am often asked what part of Scotland do I come from) and I can tell you this has got to be the coldest/wettest place and of course every time the cloud's swoop over my pain's start to get really sore,although I find the heat the worse in fact I hate the summer because I know what it is going to mean for me although if our drug's worked well we would not notice the weather change's so much.

I will let you know how I get on and please let me know how you are keeping.
All the best Rhona xx Deborah.
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Date: 16.09.2012
From: rhona

Subject: Re: new thread for Deborah

Hi Deborah, Portrush sounds nice, my Grandfather came from Ballymena (my mother's father). When i listen to the weather forecast Northern Ireland and Scotland do seem to get the worst of the weather. I do like the sun though, although i burn very easily but this damp weather seems to make me worse. My daughter moved to Spain to get away from it, i think she suffered from SAD, she is much happier there, i sometimes wonder if i should move although i do like Scotland, just the weather i don't. Take care xx
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Date: 16.09.2012
From: Deborah

Subject: Re: new thread for Deborah

Hi Rhona,
I was brought up 10 mile's from Ballymena in a little village.
What a small world! Don't what part of Scotland my grandmother came from as she died long before I was born all I know is they used to go over every harvest time to help with the crop's as her father and brother had a farm it would be nice to find out were.
Have you been to stay in Spain? I am sure you have how did you feel when you were there? I know what you mean about Scotland I have been once really beautiful.
I have been a few place's since becoming I'll and have found place's like Greece and Portugal really awful pain way's wanted to come home within a couple of day's.
I have been once to Nice in the south of France and the weather there was perfect the only thing I found was my hip's were killing me.
I am afraid my holiday day's are over as I just don't want to take the chance in case I get really bad and in foreign countries they don't seem to know what Arthritis is.
How are you today? Me not to bad today.Deborah xx
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Date: 16.09.2012
From: rhona

Subject: Re: new thread for Deborah

Hi Deborah, I have been to Spain for holidays, we went there often when the girls were younger and i have visited my daughter, she is in the Costa del Sol, it is very warm there just now, too hot for me. I haven't been abroad this year, like yourself i would be frightened to go when i am this way but if i get more mobile i would be away in a minute. I enjoy cruising, it is easier on a ship when everything is there although you need to be mobile to go on the trips. We went on a cruise 2 years ago when i could get around and we visited Venice, it was beautiful. take care x
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Date: 17.09.2012
From: Deborah

Subject: Re: new thread for Deborah

Hi Rhona,
Let's hope we get some form of drug that will ease us a bit and maybe we will get away.
Tee hee I would be the first off.
Ahh well at least we have plenty of memories to keep us going in the meantime.good night off to bed.Deborah xx.
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