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Old 16.04.2011, 20:13
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Anyone else out there with Rheumatoid Arthritis??

Hello,

I am 38 and was diagnosed with RA about 18 months ago. I have been on an emotional rollercoaster ever since... I have a really super supportive family who help and support me as much as they can but sometimes I would really like to speak to someone who has RA and knows a bit of what I am going through... I have been on MTX for 18 months and a new drug called Simponi for the last 2 months but am now feeling worse than before... anyone else on this drug who wouldn't mind sharing their experience???

Hope to hear from someone...
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Old 16.04.2011, 20:55
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Re: Anyone else out there with Rheumatoid Arthritis??

So sorry to hear about your condition. I do not have the full blown version but suffer in both my knees, due to accidents in the past. You have my sympathy, and thank goodness for the support of your family. I am sure that there will be members on here who will be able to give you their insight into treatment, remedies, etc.
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Old 16.04.2011, 21:14
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Re: Anyone else out there with Rheumatoid Arthritis??

To the OP, I am sorry about your condition, I really would recommend joining a support group as one in yahoo for example as you might find people that are going through what you are going there. As for the adverse event, why not check with your GP to check the dosage?
To Nicola: RA is an autoimmune disorder that affects the whole body not only joints, as it can also affect lungs and kidneys indirectly, I believe you might have some other kind of arthritis sorry to hear about that too.

best wishes to you both
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Old 16.04.2011, 21:24
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Re: Anyone else out there with Rheumatoid Arthritis??

Thanks for the replies, I am very lucky to have all the support from my family (and great friends) and will look into a support group too, havent really felt up to that until now as just talking about it just got me down :-( I have also had a look here in CH but doesnt seem too much going on really. Thanks for the input.
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Old 16.04.2011, 21:31
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Re: Anyone else out there with Rheumatoid Arthritis??

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Thanks for the replies, I am very lucky to have all the support from my family (and great friends) and will look into a support group too, havent really felt up to that until now as just talking about it just got me down :-( I have also had a look here in CH but doesnt seem too much going on really. Thanks for the input.
It is understandable, I do believe that a support group with people that are going exactly what you are going through could be helpful, I have tried it myself
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Old 16.04.2011, 21:33
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Re: Anyone else out there with Rheumatoid Arthritis??

You are probably right Angela, as it is only my joints that are affected - and I think it is more commonly associated with injury, and thank you for your kind words.

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Old 16.04.2011, 21:41
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Re: Anyone else out there with Rheumatoid Arthritis??

It is horrible horrible horrible(!) to be told that your body doesn't function in the way that you expected.

In some ways I am very glad to be living in this time (like, not 100 years ago) and place (like not in a place far removed from medication that can control symptoms and conditions, or might fix things that are broken), but as you said, it is still an emotional roller coaster dealing with diagnosis's which you cant do a damned lot about.

Some may share their experiences when they meet you in person, but I am not sure that this public place is where others would like to air their Victoria's Secrets
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Old 17.04.2011, 00:36
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Re: Anyone else out there with Rheumatoid Arthritis??

An Australian friend of mine has it - she's 36. I found her a couple of websites that she found helpful when she was really feeling fed up with the world...I think the main thing is that you are definitely not alone, and any chronic medical condition comes with some psychological challenges...

She's going through a few different drugs and finding some more useful than others, but at the moment I think she said she was on three main drugs, and now has to drop each one and rotate them because she has experienced some problems with her liver and they are trying to decide which combination of drugs works the best with the least side effects.

I remember I found lots of discussion about movement, and keeping the weight off (hard to do if you are depressed and in pain)...

Best of luck with finding some meds that work, and a balance in yoru life that helps you to cope...hang in there!
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Old 17.04.2011, 09:00
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Re: Anyone else out there with Rheumatoid Arthritis??

Hi, my mum was diagnosed at 38 with pscoriatic rheumadoid arthritis. She strarted of sulphasalazine ( sorry about the spelling ) then something else, then she was on methotrexate tablets. They didnt work so then she got put on the injection form of it. Same problems with it not working then she got put on something called humira then she was on both methotrexate injections and humira injections they werent working and now she is on a new drug, not sure what it is called but it sounds like the same one as you ( i think). It makes her very sleepy. She was/is so depressed because she is so sore all the time, cant function as well as she would like to because she is so tired from the drugs and cant do anything about it. Now it looks like I have it to and I hope (as mean and horrible as it sounds) I do not have it half as bad as mum because I dont know how she can cope.

Fingers crossed they have got it right this time, they always told mum when she started any new drug that it would take at least 3 to 6 months before there would be any sign of it working so fingers crossed for you to that things will get better soon.
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Old 17.04.2011, 09:30
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Re: Anyone else out there with Rheumatoid Arthritis??

My mum has it now and it's really difficult, especially because I don't really have something at hand that helps her. In general I'm quite good at finding doctors, doing my research on something etc. But this time, everything is

So sorry to read your post. I can't be of any direct help but can definitely relate to it.
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Old 17.04.2011, 10:30
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Re: Anyone else out there with Rheumatoid Arthritis??

A friend of mine has had RA since she was in her early twenties. She is now in her mid-fifties. She lives a very full life. I'm afraid I don't know anything about her medication, but I do know that she has found some support through the RA charity. You could perhaps try there.

I hope you quickly find medication suitable for your needs and I wish you all the very best.
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Old 17.04.2011, 12:12
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Re: Anyone else out there with Rheumatoid Arthritis??

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Hi, my mum was diagnosed at 38 with pscoriatic rheumadoid arthritis. She strarted of sulphasalazine ( sorry about the spelling ) then something else, then she was on methotrexate tablets. They didnt work so then she got put on the injection form of it. Same problems with it not working then she got put on something called humira then she was on both methotrexate injections and humira injections they werent working and now she is on a new drug, not sure what it is called but it sounds like the same one as you ( i think). It makes her very sleepy. She was/is so depressed because she is so sore all the time, cant function as well as she would like to because she is so tired from the drugs and cant do anything about it. Now it looks like I have it to and I hope (as mean and horrible as it sounds) I do not have it half as bad as mum because I dont know how she can cope.

Fingers crossed they have got it right this time, they always told mum when she started any new drug that it would take at least 3 to 6 months before there would be any sign of it working so fingers crossed for you to that things will get better soon.
Hi, thanks for your msg, sounds very like how I feel, it does get you down, I get so tired and having husband and 2 kids is hard when you feel so exhausted.

I wish you and your mum well, you never know they may find a cure one day...
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Old 17.04.2011, 12:13
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Re: Anyone else out there with Rheumatoid Arthritis??

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A friend of mine has had RA since she was in her early twenties. She is now in her mid-fifties. She lives a very full life. I'm afraid I don't know anything about her medication, but I do know that she has found some support through the RA charity. You could perhaps try there.

I hope you quickly find medication suitable for your needs and I wish you all the very best.
Thanks for your msg, nice to know that when the meds work you can live a full life again.
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Old 17.04.2011, 12:19
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Re: Anyone else out there with Rheumatoid Arthritis??

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My mum has it now and it's really difficult, especially because I don't really have something at hand that helps her. In general I'm quite good at finding doctors, doing my research on something etc. But this time, everything is

So sorry to read your post. I can't be of any direct help but can definitely relate to it.
Hi, Yes unfortunately this is a horrid disease and there is no cure (for the moment) but if we find a drug that works we can prevent it getting worse so that is something... not easy, your mum will appreciate you being there for her I am sure x
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