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Date: 28.08.2015
From: Kate Heaton

Subject: Help Please

I was diagnosed with RA 10 years ago. Since then, my condition has seriously deteriorated. I am on sulfasalazine and prednisone steroids. I have RA in all my joints and OA also in my wrists. I got septic arthritis in my left knee last November, and since then I am in constant pain and have restricted mobility. I saw a 'knee' consultant 2 weeks ago and he said I was too young for a knee replacement, I'm 44, although there is significant damage in my knee, and there is nothing he can do but has referred me to physiotherapy. I am at my wits end, I don't know how much more pain I can take, and the thought of this continuing indefinitely fills me with fear as I don't think I can take much more. I am scared and lonely, although I do have a good husband and children, but I feel I am becoming a burden to them, as the RA is dictating to all our lives. If anyone could give me some advice or information I would be really grateful. Thanks in advance.
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Date: 28.08.2015
From: lucy

Subject: Re: Help Please

Hi Kate, So sorry to hear that you are suffering so much. It is horrible when we feel so bad. I felt the same way as yourself until I was given Rituximab, it's a biologic drug and it has made such a difference to me. Perhaps you could phone your rheumy nurse and ask about it or some of the other biologic treatments. You shouldn't have to suffer like that. It's unfortunate but sometimes you have to make a bit of a noise before they will really listen.
I really hope you get something to help soon and you feel better but please contact the hospital and tell them how it is and that you need some more help now. Good luck xxx
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Date: 30.08.2015
From: Clare

Subject: Re: Help Please

Hi Kate,
Sorry to hear you have been having such a tough time it's a horrible illness. I'm in a similar position at 42 was diagnosed 10 years ago. I was actually ok for first 4 years but after having my daughter within 6 weeks could barely walk or dress myself. Past 5 years have been up & down, methotrexate worked really well for about 15 months & I was doing really well but after cellulitis & Iv antibiotics it never quite worked the same. Then followed 2 years of hell constant pain 2 failed biologics I could barely walk around the house struggling to get out of a chair. Like you I couldn't have coped without my husband or daughters but I felt isolated & such a burden as all my family & friends are all very active people. About a year ago I tried abatacept another biologic & while it was slow to work fully, about 3 months I'm now doing really well. I'm still in pain due to permanent damage in my knees, shoulders & hands but I can get around, walk more easily etc. Last Christmas I even managed to take the kids to Disneyland Paris which was a huge achievement & something I never thought I would do again, at least not without a wheelchair. I've been in a bike for short rides this summer too.
Please speak to your consultant and push to try the new drugs as they really can be live changing & you don't have to be in so much pain.
Clare
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