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Date: 14.04.2012
From: marlene

Subject: Hi Davina

How are doing? Well the weather is taking its toll on my pain still.I hope you are feeling a bit better. I have been reading the posts,sorry you are having trouble with your benefits.
It seems so unfair when you already have enough to deal with.
I don't know it seems the whole world is going mad!!!!(or maybe its just me.)
Well Davina take care sweetheart, hope your family are all well. XX
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Date: 15.04.2012
From: davina

Subject: Re: Hi Davina

hi marlene i am having a horrible week, ist my ra gets worse now had a asthma attach and was in hospital friday night, got let home sat night after a suspected clot in lung was discounted.

i'm just waiting for the next thing to hit me i am so low don't know how much more i can take, i know the ra pain is my own doing but i didn't ask for asthma attack and pain in chest and i don't know why its happening, i haven't add an attack for years and not on meds that would cause it. :(

yes benefits are also causing me problems thank god my partner is good with money but his owed £2000 which he as to go court for now could take ages. we are going to hit our saves which isn't much to cover the bills and my partner is going to become my carer but he will have to still work part time.

hope you are well. x
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Date: 15.04.2012
From: anne

Subject: Re: Hi Davina

Hi Davina, Sorry to hear that you were in hospital with an asthma attack. Also sorry to hear you have problems with money. I am wondering though why you would consider trying to get pregnant when you are feeling so bad and if you need your partner to be your carer then how are you going to look after a baby. I do wish you well though in whatever happens.
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Date: 15.04.2012
From: davina

Subject: Re: Hi Davina

hi anne i have been of meds since jan due to infections and broncitis which meds caused.
i have always wanted another baby my son is nearly 3 and i wanted children close together so for me this is going to be nearly 4 years apart.

i wanted to wait til my meds kicked in and worked but have been waiting for 2 1/2 years now and still nothing. i see my rheumy next week which means all drugs are out my system for 3 months so i can go and try for a baby now its safe. if i wait to try next meds there is no certinaty it will work and may have to go thought coming off meds again.
thank you for your interest x
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Date: 15.04.2012
From: marlene

Subject: Re: Hi Davina

Hi Davina, sorry to hear you had an asthma attack, I have asthma and I don't know if you are aware stress can bring on an attack.
I guess when you fall pregnant there is a chance your RA may settle, only going by the posts on here (i hope this is true for you).
Pains in your chest can also relate to stress.
Your partner sounds such a great guy, hope he gets his £2000 soon.
I know the benefit system is flawed, we also for 7yrs had to manage on my hubby's income when I became to full of pain to work.
We struggled through and I guess you will too. Its not ideal especially for you with a young family. Your hubby should get an allowance for being your carer,and you should also check with the deparment that deals with carers allowance if there is any other support financially you can claim.
I hope all this sorts its self out for you.
Take Care and I am sending all my best wishes and a big hug.xx
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Date: 16.04.2012
From: paula

Subject: Re: Hi Davina

Hi Davina,
Really sorry to hear of your asthma attack, they are so frightening, I have asthma too, and for me, the stress makes things a lot worse. It is really frightening when you can't breathe. I am seinding you warm wishes, and hope it settles down for you real soon. Hang in there Davina. warm wishes to you both too, xx
x
Marlene and Anne
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Date: 16.04.2012
From: davina

Subject: Re: Hi Davina

hi marlene thank you i hope so too. i have never experienced an attack like that with the pain in my chest and it was scary.

paula thank you i was put on 30mg of pred so starting to feel the effects and the ra is easing, after the week i will then come back down to 10mg and i think that will be hard but i don't want to be a high dose for ages.

hope you are both well, you to anna x
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Date: 17.04.2012
From: Paula

Subject: Re: Hi Davina

Hi Davina,
It is horrible, it feels like your chest is being crushed, and it is very frightening and scary. Hope the steroids are easing it a bit, hang in there and take care. Paula x
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Date: 17.04.2012
From: marlene

Subject: Re: Hi Davina

Davina, i hope you are feeling better to-day. Rain has my body in overdrive the pain is awful. Never mind it's life. You take care!!! xxx
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Date: 17.04.2012
From: marlene

Subject: Re: Hi Davina

Hi Paula, haven't spoken in a while hope you are ok!!! Take Care xx
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Date: 17.04.2012
From: Deborah

Subject: Re: Hi Davina

Hi davina,
Sorry to hear you have been so un well just wanted to let you know that I am thinking about you.

I agree with Marlene stress can bring on an attack and with all the hassle of your esa I am not surprised.

This goverment we have at the moment is trying to sort thing's out but they are hitting all the wrong people my son has been cut off to.

I was thinking myself of going off my med's as have terrible mouth sore's going to talk to my rhummy nurse there has got to be a better answer than all these horrible meds we take.

Hope you are bit better My own pain's were killing me yesterday and today this weather is driving us all mad.Take care Deborah xx.
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Date: 19.04.2012
From: davina

Subject: Re: Hi Davina

hi deb thank you i am a little better and i just needed to really rest, mark wouldn't let me do anything for 2 days which was nice.

hope your rheumy nurse was helpful if you have contacted her. the only good thing about the asthma attack was steriods are at 30mgs and as helped the ra pain but that will change again this weekend, lol the things we do to get relieve get an asthma attack lol xx
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Date: 19.04.2012
From: Paula

Subject: Re: Hi Davina

Hi Marlene it has been a while, thinking of you and sending you warm wishes, xx
Hope you are hang in there Davina, take care xx
Take care both of you xx
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Date: 20.04.2012
From: Deborah

Subject: Re: Hi Davina

hi davina,rhona and all on here,

Hope everyone is ok today,

davina glad to hear you had a good rest and are a bit better.If you don't mind me asking what steriod are you on?

phoned the rhummy nurse yesterday and she told me to stop taking the mtx for a week to see if my mouth will sort itself out then she want's me to go back on it next week but am not doing that as I know my mouth will just start up again so will phone and see if I can get an appt with my rhummy and see what he suggest's.

Have only missed my jab on tues past and my knee was so painful I could hardly get up from the sofa,my wrist's,elbow's,neck,feet,ankle's and toe's were all aching but last night when I went to bed my right knee nearly locked with me had to keep moving it scared me a bit and then this morning woke up like a solid block it was really hard to get out of bed this morning ,so went up to my local chemist and picked up a few herbal remedies,devils claw,omega 3 and glucosamine asked him if they would do for the short term ok and he said yes but only short term as I was scared I will take a flare-up. Had a good chat with him and mentioned the bio logics he said i need something too keep this illness under control.I am thinking that if these help I might even stay on them and go off everything else as I am so fed up, but to be honest have felt better so far today and not as tired as I normally am but am burning a lot and wonder if it is a sign of thing's to come,but will let you know how I get on with them.

You are right davina the thing's we have to get just to get sorted out.Have you ever tried any of the herbal remedies? sorry for going on a bit tonite,hope the family are all well and if you can continue to take care of yourself.All the best Deborah xx.
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Date: 22.04.2012
From: davina

Subject: Re: Hi Davina

hi deb i am on prednisolne and they are helping, now i'm reducing already i can feel the pain coming back to get me.

mtx is a horrible drug and if you can't deal with the side effects then don't, try but if they are to much and it gets to you don't just live with it. your gp if he is any good will prescripe you some to help relieve.

i have tryed stopping eat wheat but didnot work, will be looking in to vit c and d and extra folic acid but not sure what is safe before/during pregnancy.

hope your doctor/nurse will help soon x x
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Date: 23.04.2012
From: Deborah

Subject: Re: Hi Davina

Hi davina,
How are you at the moment?I know what you mean about the pain coming back waiting on it myself I am glad the prednisolne are helping never been on them.

I am actually ok just feel my wrists and knees more painful but am still much the same as when I was on mtx.Although it is early day's.

Just got my blood test result's today guess what folic acid fine all other b's fine but have higher level's of vitimin b12 so it must have been the mtx causing the mouth sore's because since I stopped it last week my mouth is all
healed.

Will get an appt this week to see the rhummy but if I have to wait a while will see the doc if thing's get to painful.

I know all these drug's are horrible and am really fed up getting blood test's done esp since I had the heart test (cardiac catherization) find my vein in my right arm is really painful when getting blood taken.PA affects the internal organ's and veins so know now what was making me have pain's in my chest.

Hope all the family are well Deborah xx.
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Date: 25.04.2012
From: davina

Subject: Re: Hi Davina

hi deb hope your still doing ok with no meds and you got an appointment.
you should ask for pred just to get you though for a week or so they will really help if the pain hits you.

i'm sorry you have pains in your chest, hope they have carmed down and you are ok

we are ok, pains are back and hitting me like a brick being thrown at you but haha, you will not win ra lol x x take care x x
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Date: 27.04.2012
From: Deborah

Subject: Re: Hi Davina

Hello davina,
How are you? I am still ok can't get an appointment with the rhummy for ages getting a call later this week from the rhummy nurse to let me know when I can see him.She asked me if I had been discharged as she noticed there were no follow up appt's for me she thought that was really strange and said she would look into it. Don't think they know what they are doing half time.

I have had a good chat with the rhummy nurse told her I don't want to take the mtx injection's any more as my skin is so sore wanted to go back on the tablet form as I think there is not much difference if anything the tablet's were better but tried my doc today by phone and they won't change them until they get a letter from the rhummy, the doc issued another script so told the chemist to cancel it as I was not taking the injection form anymore wanted to wait until I get the tablet form he actually agreed with me.

Sometime's feel like screaming they really don't try to help you they don't understand how frustating it is for the patient.

So I have come to a decision I have decided that I am not trying any bio-logic's as they are all injection form and as far as I can see they are not the miracle cure they were made out to be fair enought they may help some people but I don't fancy going throught all that just to find out.So I am just going to stay on tablet form's of drug's and when they don't have anymore that work for me I will just take painkiller's.My husband agree's with this as he say's your drug's work for a while then they don't seem to be as effective.

I am doing pretty well with the herbal
remedies so far,fair enought have more pain in joint's but I am not sick like the mtx and not just as tired so long may it last.

I have had no pain in the chest since oct in fact since I got the camera, think maybe the stretching of the vein's helped that,the heart specialist said I have a very healthy heart which is good as both my parent's died with heart disease at a young age.

Sorry for going on, really hope you are manageing ok yourself davina all the best Deborah xx.
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Date: 29.04.2012
From: davina

Subject: Re: Hi Davina

hi deb rheumys/nurses i think have their own time scale and don't matter how much you need the support they take ages to get back to you.
hope you get your pills soon and scream at them because they will not think you need as much help as others.
i totally agree about the bio drugs i have taken 2 and where is my miracle?
when i go back onto the drugs i will try 1 more, infustion type and if that doesn't work i will try trail drugs just to see if there is anything, with young children i will keep trying but i hate having to put myself tho it.

how is your pain and the herbal remedies going?

i am ok steriods are at 12.5mg a day and dealing with pain for the last 2 days so well see how long this lasts.
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