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Date: 21.07.2013
From: Lizzy

Subject: Mum just been diagnosed, suspected to have had it for 13 years

Hi there!
I was just wondering if anyone could give me any advice. My mum has just been diagnosed with Rheumatoid Arthritis. The Consultant said she has probably had it for about 13 years and she was very shocked it had not been picked up before now (she was told it was Fibromyalgia). Her hands are deformed and her feet and she gets pain in her shoulder. What can she expect now? What sort of improvement should she see? Has this disease been affecting her insides? Does it attack organs or anything? What is the progression of this diease?
I would love to hear from anyone who has had it.
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Date: 21.07.2013
From: bsk

Subject: Re: Mum just been diagnosed, suspected to have had it for 13 years

Hi Lizzy,

sorry to hear your mother went undiagnosed. The good thing is she can now start some meds to stop further damage to her joints and help control the disease. She should hopefully see improvement in the pain and no further damage. I don't know about organs, as the disease is different in everyone so it's hard to say. They usually aim to get people started on some drugs within 12 weeks of diagnosis. If you go to Arthritis Research webpage, you will find lots of info on what to expect and you can ask them to send your mother some leaflets too.
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Date: 22.07.2013
From: Colin W

Subject: Re: Mum just been diagnosed, suspected to have had it for 13 years

Hi Lizzy , its a real shame they have not picked up that she has RA before , like bsk said the drugs should stop her having more joint damage & if it was picked up before she would have had a lot less

the most common thing RA attacks is our eyes because inflammation blocking the tear ducts , its rare to attack other main organs so dont worry about that & with the new drugs RA can be very well controled , its about stopping the joint damage

in the link section above , National Rheumatiod Arthitis Society & Arthritis Care both have free helplines if you need them
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Date: 07.11.2013
From: Linda Rymill rymilllinda@hotmail.co.uk

Subject: Re: Mum just been diagnosed, suspected to have had it for 13 years

Hi
Yesterday i was told i have rhumatoid arthritis,in a stupid way i felt a sence of relief.I know that sounds stupid but i have suffered for years with severe joint pain and my joints letting me down completly,i have felt that the doctors thought i was not as bad as i was saying but now i feel i will be listened to when i say i am in so much pain i cant get out of bed.And i mean i cannot lift my head off the pillow.Now i know what is wrong with me i can work with the doctors and hopefully be taken seriously for once.
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Date: 07.11.2013
From: Colin W

Subject: Re: Mum just been diagnosed, suspected to have had it for 13 years

hi Linda , hope they sort some good drugs out for you so it can control your RA , there is loads of us with RA on here , myself had it since mid 90s

the new drugs out now can be realy effective & some good advances they are making in the last 15 years will at some point hopefully we will benifit , there are free helplines in the link section above & Arthritis Care also has a forum

hope you start to feel better soon
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Date: 07.11.2013
From: Linda R

Subject: Re: Mum just been diagnosed, suspected to have had it for 13 years

Hi Colin
Thanks for that it is nice to know their are people out there that i can talk to,i have felt very alone for a long while even my family said i was a hypercondriac as i was always complaining of joint pains lol so now i know why.I have to go back to the hospital to sort out my treatment so i hope they will find a drug that suits and will help with the pain.Thankyou for your advice it is good to hear that they can help.
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Date: 07.11.2013
From: Colin W

Subject: Re: Mum just been diagnosed, suspected to have had it for 13 years

Hi Linda , most families & even some GP's dont realy understand what it is like suffering with arthritis , they just think its a dodgy hip/knee , on the forums you will find there loads going through the same as you & the rest of us have been there at some point ,

have they mention what drugs to start you on , Disease-modifying antirheumatic drugs (DMARD) & Anti-inflammatory agents (NSAIDs) are the main types of drugs , the standard DMARD they use is Methotrexate & works well for RA , some of us take several DMARD drugs along with the newer biologics (anti-tnf) ,
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Date: 08.11.2013
From: Linda R

Subject: Re: Mum just been diagnosed, suspected to have had it for 13 years

Hi Colin
Yes it is so nice to speak to people who understand what it it like.The Rhumatoligist has given me leaflets to read on,Hydroxychloroquine,Methotrexate andsulfasalazine,all wonderful names but at the moment i have no clue what they are or what they do so i will have to read up on them.I have had an appointment come through for exrays on my feet and hands on Wednesday.We shall see what happens after that.Thankyou ever so much for your support it helps a lot.
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Date: 01.12.2013
From: Linda R

Subject: pain control.

Hi i am now on the proper tablets for my rhumatoid arthritis they are the (DMARD)but i did not realise they are not painkillers so i stopped taking my painkillers and am now in agony again.Any suggestions on what i should do as i am back at work tomorrow but really feel to ill to go.
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