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Date: 03.02.2012
From: rhona

Subject: Inactive and losing weight

Hi everyone, I have R/A and for the last few months have had a lot of bother with my knees and feet and i've not been able to get out. I thought i would probably put weight on sitting about so much but instead i have lost over a stone and i am worried it is muscle I am losing. I was supposed to go for physio but i'm in too much pain to do that at the moment, i thought when i started enbrel i would be able to get moving again but it's 4 week i've been on it and i'm still as bad, my family tell me to keep moving but when i try to walk my knees are crunching and i am so stiff, i really hate this disease and it is making me o depressed.
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Date: 03.02.2012
From: kelly u

Subject: Re: Inactive and losing weight

hiya rhona ....in the last year i have lost over two stone not through trying ....im 30 and have had it for six years i was on humira and enbrel which is what i thought made me loose weight .
totally understand where you are coming from RA has ruined my life tbh i dont go out as i cant as in to much pain and get to tired its mainly in my arms .....I have a very supportive family and even my two young children help me out alot ...a friend of mine runs a dance school i have private lessons with her which helps to control my pain a little i notice the difference when im not excerising you need to work through the pain and get to the other side so maybe physio is the way forward .....as for the weight loss when i brought this up with the doctor he said it was very normal and keep a eye on it ....hope this helps the aim of the game is to take each day as it comes
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Date: 03.02.2012
From: lynnr

Subject: Re: Inactive and losing weight

Hi I lost over 2 stone in the last 6-8 months but I was going through the dmard drugs and had lost my appetite and just felt really low I've been taking enbrel for 5 weeks and my appetite has improved x
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Date: 03.02.2012
From: rhona

Subject: Re: Inactive and losing weight

Thanks for your reply Kelly, i think at the moment i am just feeling a bit sorry for myself and also worried that my muscles will become so weak with not exercising. That is good that you are having private lessons, it does make sense to exercise so i guess i should try and do a bit more, i have had R/A for over 10 years and was coping quite well up until about 6 month ago. It must be much harder for you when your children are still young. Take care and thanks again. x
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Date: 03.02.2012
From: rhona

Subject: Re: Inactive and losing weight

Hi Lynn, I don't have much an appetite at the moment, i thought when i first started the enbrel things were improving a little but these last 2 weeks have not been good, i think i expected to feel a new person when i went onto it, perhaps it's still early days but i must admit i am feeling rather down that i have not shown an improvement yet. hope you are doing well. x
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Date: 03.02.2012
From: lynnr

Subject: Re: Inactive and losing weight

Aw rhona that's not so good I have more appetite on enbrel than I had on the 5 disease modifying drugs I was on x
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Date: 03.02.2012
From: bsk

Subject: Re: Inactive and losing weight

Hi Rhona, sorry to hear you are down. Hopefully, the drugs will kick in soon.

Exercising can be really difficult. I was sent a really good leaflet with exercises you can do at home (some even in a chair) from Arthritis Research UK - think it was called Keep Moving. I'll dig it out tomorrow and check for you but you can go on their website or ring them up. They are designed for exactly what you are worried about and are not hard to do.I've got quite a lot of wastage even though I try and do a lot. Like many people, I am often too ill to exercise and I forget to do the home ones.

Hope you pick up soon.
xx
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Date: 03.02.2012
From: rhona

Subject: Re: Inactive and losing weight

Thanks for that Lynn, I will see if i can find that on the internet or i will call them on monday. then it's just getting into the habit of doing them, hopefully this bad phase will end soon. look after yourself. x
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Date: 03.02.2012
From: rhona

Subject: Re: Inactive and losing weight

Hi bsk, i think my brain must be affected with this as well lol, i put Lynn's name on message above that was meant for you. I do hope you start feeling better soon, you have had your time of it as well, take care xx
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Date: 03.02.2012
From: bsk

Subject: Re: Inactive and losing weight

Thanks Rhona! I looked for the leaflet earlier but can't find it but am pretty sure it is A Research. Need to get another copy myself and your post pushed me into doing some stretches myself. It is hard to keep up, especially when joints hurt. The cold can't be helping you much.
Take care yourself. xx
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Date: 05.02.2012
From: rhona

Subject: Re: Inactive and losing weight

Hi bsk, i had a look on-line and there are some i can try, the only problem is i feel so bad just now i can't do anything, i may call the doctor out if i don't feel any better as i can hardly move. How long have you been on the steroids and how many do you take? i feel i will have to get something else, i'm still on all my drugs plus the enbrel. hope you are feeling better, perhaps some nice homemade chicken soup would help your chest.xx
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Date: 05.02.2012
From: bsk

Subject: Re: Inactive and losing weight

Do call the doctor out or do you have a specialist rheumy nurse you can call tomorrow? They might give a steroid shot or some tablets. That is what I do in your situation. Sometimes she has just got the on call rheumatologist to ring me (or I can ring the hospital myself and ask them to be paged and they will phone you at home). Don't suffer any longer than you need to. Let me know how you get on.

I am feeling a bit better today but frustrated with the weather as been stuck at home for a week now. Went out for a coffee this afternoon but didn't want to go far due to snow.
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Date: 06.02.2012
From: rhona

Subject: Re: Inactive and losing weight

hi bsk, i called the hospital this morning and asked to speak to the sister that arranged the enbrel but she's not got back to me yet. I'm glad that you are feeling a bit better and managed to get out. I am further north than you and surprisingly we didn't get any snow.
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