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• Bones & joints >> Rheumatoid Arthritis >> Finding information about RA >> Finding information about RA

Finding information about RA

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• Bones & joints >> Rheumatoid Arthritis >> Disease duration 6-10 years >> Interview 30 >> He had been shocked at the impact of RA on different aspects of his life.

Diagnosed '95 after severe ankle pain (maybe virus triggered). Subject in Anti-TNF trial. Pneumonia due to RA. Regular steroid injections prior to ankle fusion. Methotrexate/folic acid, Celebrex, Tramadol, Diazapan, Tomazapan, Prozac, Atenolol, Dothiepin.

• Bones & joints >> Rheumatoid Arthritis >> Disease duration 16-20 years >> Interview 03 >> Learnt she has a 'weak positive' result and decided to look for an alternative cure instead of talking to her doctor.

RA diagnosed '86. For 10 years chose NSAIDs/pain killers and complementary therapies. DMARD treatments started 1996 (various). 2 replacement shoulders 2000. Started Infliximab 9/02. Less pain/tiredness but pre-existing damage means hip replacement '04.

• Bones & joints >> Rheumatoid Arthritis >> Disease duration 0-5 years >> Interview 12 >> Was very ill at first but was comforted by getting information about the disease and knowing new treatments exist.

Diagnosed mid-2000 after rapid onset. Side-effects from sulphasalazine with hydroxychloriquine. Currently Methotrexate, NSAID, Losec, Celeximab and Paracetemol. Some steroid pulses and planned knee replacement.

• Bones & joints >> Rheumatoid Arthritis >> Disease duration 0-5 years >> Interview 45 >> Believes you should get as much information as you can.

Partner diagnosed with RA aged 27 has had the disease 4 years.

• Bones & joints >> Rheumatoid Arthritis >> Disease duration 0-5 years >> Interview 48 >> Attended his partner's appointments and felt it helped that both of them were able to hear the information.

Partner was diagnosed with RA at 25 has had the disease 5 years.

• Bones & joints >> Rheumatoid Arthritis >> Disease duration 0-5 years >> Interview 24 >> Likes to find out information herself about new treatments suggested by the doctor.

Diagnosed April 1997 after sudden onset of symptoms and admission to hospital. RA widespread leading to initial depression. Side-effects from Methotrexate so now taking Leflunomide 20mg/day, Rofecoxib 12.5mg/ alternate days and pain killers as required.

• Bones & joints >> Rheumatoid Arthritis >> Disease duration 6-10 years >> Interview 32 >> Better education is needed about the side effects of methotrexate and the reason for blood monitoring.

Diagnosed seronegative RA '97 but symptoms since '77 after flu-like virus. Took Opren but side-effects so chose homeopathy. Mid '90s significant disease progression & began DMARDS, but side-effects. Now 6 weekly Depomedrone injections (120mg), physio & hydrotherapy.

• Bones & joints >> Rheumatoid Arthritis >> Disease duration 16-20 years >> Interview 03 >> She read as much about anti-TNF as possible to make a decision and to calm her fears before she started. Felt she had to try this new treatment.

RA diagnosed '86. For 10 years chose NSAIDs/pain killers and complementary therapies. DMARD treatments started 1996 (various). 2 replacement shoulders 2000. Started Infliximab 9/02. Less pain/tiredness but pre-existing damage means hip replacement '04.

• Bones & joints >> Rheumatoid Arthritis >> Disease duration 16-20 years >> Interview 23 >> Explains feelings towards her joint operation, not wanting to know details and seeing it as a positive step.

Psoriasis age 17. Rapid onset RA diagnosed seronegative '86. Various DMARDS tried and complementary therapies/diet helped. Stroke '00, blood disorder & Sjogrens. Currently Steroids, Dihydrocodeine, Vioxx. 2 new knees/1 hip/2 shoulders & right thumb fusion.

• Bones & joints >> Rheumatoid Arthritis >> Disease duration 21-25 years >> Interview 19 >> Feels surgeons could explain more and patients should ask questions about the planned operation.

Diagnosed 1980. Early treatment NSAID, pain killer and steroids. 9 operations e.g. joint replacement, neck fusion. Various DMARDS. Currently on Anti-TNF Infliximab/7 weeks. Methotrexate weekly, Prednisolone, Rofecoxib, hydroxychloriquine daily.

• Bones & joints >> Rheumatoid Arthritis >> Disease duration 21-25 years >> Interview 05 >> Would have liked the surgeon to tell her how her ankle would feel after the plaster was removed.

RA diagnosed as significant symptoms after birth of 2nd child. Complementary treatments used. Takes Diclofenac 15mg & 2 Coproxamol daily. 10 operations: hips, knees & shoulder replacement/revision; neck, ankle & toe fusions, and removal of bone in 1 elbow.

• Bones & joints >> Rheumatoid Arthritis >> Disease duration 0-5 years >> Interview 39 >> She and her husband discussed medication and its implications for pregnancy with the consultant.

Diagnosed for 9 months but symptoms for 4/5 years. Current treatments Sulphasalazine,voltarol, thyroxine, ventolin, coproxamol. Diclofenac twice daily.

• Bones & joints >> Rheumatoid Arthritis >> Disease duration 0-5 years >> Interview 37 >> Has used various sources of information but finds the leaflets answer most questions and are easy to read.

Diagnosed July 2001 after developing a stiff neck. Combination treatment of Sulphasalazine 2000mg/day and Methotrexate 10mg/week with folic acid 5mg 2/week. Rofecoxib 25mg/day, Ferrous sulphate 400mg/day (anaemia), Protium 40mg/day (indigestion).

• Bones & joints >> Rheumatoid Arthritis >> Disease duration 6-10 years >> Interview 32 >> Things have changed a lot since her symptoms started in the 1970s - doctors are now less formal and more willing to talk.

Diagnosed seronegative RA '97 but symptoms since '77 after flu-like virus. Took Opren but side-effects so chose homeopathy. Mid '90s significant disease progression & began DMARDS, but side-effects. Now 6 weekly Depomedrone injections (120mg), physio & hydrotherapy.

• Bones & joints >> Rheumatoid Arthritis >> Disease duration 26 years plus >> Interview 22 >> Was pleased to discover books about arthritis including one on physical relationships by Young Arthritis Care called 'Lovemaking and arthritis for you

Diagnosed 1964 Juvenile Chronic Arthritis. 11 years of steroids limited growth. NSAIDs 'til age 37. Now Methotrexate 10mg/wk + folic acid, daily Prednisolone 5mg, Naproxin 100mg, Niozadadine (anti-ulcer) & iron. 2 hips replaced age 26 & 2 knees, age 30.

• Bones & joints >> Rheumatoid Arthritis >> Disease duration 11-15 years >> Interview 06 >> Wishes she had known more about how newer arthritis treatments can help people to avoid disability.

RA began with stiff neck and initial severe flare lasting months; 11 yrs - no further symptoms; then 2 acute flares in 2 years. Steroid injections helped. Currently on Methotrexate 10mg /week & daily hydroxychloroquine 400mg, Ranitidine 300mg & folic acid.

• Bones & joints >> Rheumatoid Arthritis >> Disease duration 11-15 years >> Interview 29 >> Found out about useful organisations and aids to help her work and was surprised that her OT and rheumatologist didn't know about them.

RA diagnosed '90 & Juvenile RA age 8-11. Significant DMARD side-effects. Had breast cancer '98 & drugs also relieved RA. Methotrexate 15mg/week, folic acid 5mg 6/7 days, daily Diclofenac, Tamoxifen 20mg & Nibedipine 20mg. Paracetemol & Zantac as required.

• Bones & joints >> Rheumatoid Arthritis >> Disease duration 11-15 years >> Interview 06 >> Found important information on the internet about how to take her methotrexate.

RA began with stiff neck and initial severe flare lasting months; 11 yrs - no further symptoms; then 2 acute flares in 2 years. Steroid injections helped. Currently on Methotrexate 10mg /week & daily hydroxychloroquine 400mg, Ranitidine 300mg & folic acid.

• Bones & joints >> Rheumatoid Arthritis >> Disease duration 6-10 years >> Interview 30 >> Used the internet to find out what was going to happen before fusion surgery, and also buys complementary medicines from websites.

Diagnosed '95 after severe ankle pain (maybe virus triggered). Subject in Anti-TNF trial. Pneumonia due to RA. Regular steroid injections prior to ankle fusion. Methotrexate/folic acid, Celebrex, Tramadol, Diazapan, Tomazapan, Prozac, Atenolol, Dothiepin.

• Bones & joints >> Rheumatoid Arthritis >> Disease duration 26 years plus >> Interview 27 >> Her GP practice allows patients to contact the doctors and order repeat prescriptions on-line.

RA diagnosed 1975 after stiff fingers. Elbow replacement '91 and 2 toe operations. Currently Methotrexate 10mg/week & folic acid 6/7 days, daily Cyclosporin 150mg, Diclofenac 100mg suppository, co-codamol as required and Losarlyn 100mg (blood pressure).

• Bones & joints >> Rheumatoid Arthritis >> Disease duration 21-25 years >> Interview 36 >> Uses the internet to buy aids, including a power socket remote control, and other items related to her illness.

Diagnosed 1979 as a young child. Currently on Methotrexate 10mg & folic acid, tramadol 100mg 2/day, solpadol 7/day. 2 hips and 2 knees replaced under spinal anaesthetic in succession over 2 years. Broken femur complication of last knee operation.

• Bones & joints >> Rheumatoid Arthritis >> Disease duration 0-5 years >> Interview 07 >> Uses the internet to check out media stories about 'miracle cures' for arthritis.

RA diagnosed 1998 after months of wrist pain and early morning stiffness. Initial steroid injections. Currently: Methotrexate 7.5mg /week & folic acid 5mg/day, Hydroxychloroquine 400mg/day and Ibuprofen as necessary. Exercise helps so swims 5 days a week.

• Bones & joints >> Rheumatoid Arthritis >> Disease duration 0-5 years >> Charlotte - Interview 55 >> Finds that magazines and books give confusing advice about lifestyle and RA and prefers to look at the ARC website. She is attending a meeting at her

Charlotte was diagnosed with rheumatoid arthritis in July 2007. The first time she saw her consultant was as a private patient because on the NHS there was a waiting period of three months. She is on Methotrexate. She feels more tired than before her diagnosis.

• Bones & joints >> Rheumatoid Arthritis >> Disease duration 6-10 years >> Tara - Interview 53 >> Tara says that 'Googling' for information can give you the worst case scenario. Somehow what she found on the web was reinforcing her negative feeling

Following her diagnosis Tara was put on Methotrexate and this controlled her illness very well. She came off Methotrexate after deciding to have a second child. She describes her antenatal care as 'excellent' and felt safe and reassured. She is currently on anti-TNF treatment: Humira.

• Bones & joints >> Rheumatoid Arthritis >> Disease duration 0-5 years >> Janet - Interview 56 >> A meeting with a multidisciplinary team at the hospital was much more helpful to her than looking at websites.

Diagnosed in 2006. Janet takes Methotrexate 15 mg but experiences severe sickness and nausea. She will start taking Methotrexate in injection form and hopes this will reduce its side effects. She also takes: Tramadol with paracetamol; folic acid and amitriptyline at night when needed.

• Bones & joints >> Rheumatoid Arthritis >> Disease duration 11-15 years >> Michelle - Interview 51 >> Talks about going to live in France, her concerns regarding medical care and the information she was given at a Social Security office and by a French

Michelle is currently on anti-TNF treatment: Humira. She has taken Methotrexate for a number of years but has had breaks in between following a biopsy that revealed liver scarring. Michelle was diagnosed with osteopenia (a milder form of osteoporosis) in her spine and needs to take calcium tablets regularly.

• Bones & joints >> Rheumatoid Arthritis >> Disease duration 6-10 years >> Tara - Interview 53 >> Tara says that young adults with RA have different information needs to those of older people with the condition.

Following her diagnosis Tara was put on Methotrexate and this controlled her illness very well. She came off Methotrexate after deciding to have a second child. She describes her antenatal care as 'excellent' and felt safe and reassured. She is currently on anti-TNF treatment: Humira.

• Bones & joints >> Rheumatoid Arthritis >> Disease duration 0-5 years >> Georgina - Interview 57 >> She doesn't visits the RA websites as much as she used to but has made good friends, in particular one lady with whom she still keeps in touch.

Diagnosed two years ago Georgina has been on B-cell therapy rituximab since November 2007. Previously she was on anti-TNF therapies; Humira and Enbrel. Her diagnosis of RA came about after her Pain Syndrome consultant referred her to the rheumatology clinic.

• Bones & joints >> Rheumatoid Arthritis >> Disease duration 11-15 years >> Michelle - Interview 51 >> She will either teach English or study at university in France. Says that her big concern was about healthcare and while there on a visit she went to

Michelle is currently on anti-TNF treatment: Humira. She has taken Methotrexate for a number of years but has had breaks in between following a biopsy that revealed liver scarring. Michelle was diagnosed with osteopenia (a milder form of osteoporosis) in her spine and needs to take calcium tablets regularly.

• Bones & joints >> Rheumatoid Arthritis >> Disease duration 0-5 years >> Kate - Interview 52 >> She was almost housebound because of her RA. Doctors started her on etanercept (Enbrel) and provided the necessary information but did not promise any

None of her previous non-biologic treatments have worked long-term. Her condition deteriorated to such an extent that she was housebound and needed help with most things. Currently she is on Enbrel and Methotrexate and her condition is much improved.

• Bones & joints >> Rheumatoid Arthritis >> Disease duration 6-10 years >> Tara - Interview 53 >> She was 'amazed' to be given lots of information and advice about her anti-TNF medication. Says that she put her concerns about side effects of Humira

Following her diagnosis Tara was put on Methotrexate and this controlled her illness very well. She came off Methotrexate after deciding to have a second child. She describes her antenatal care as 'excellent' and felt safe and reassured. She is currently on anti-TNF treatment: Humira.

• Bones & joints >> Rheumatoid Arthritis >> Disease duration 0-5 years >> Georgina - Interview 57 >> Says that her care team at the anti-TNF clinic has prepared her for the possibility that rituximab might not work and that she too has more 'realistic

Diagnosed two years ago Georgina has been on B-cell therapy rituximab since November 2007. Previously she was on anti-TNF therapies; Humira and Enbrel. Her diagnosis of RA came about after her Pain Syndrome consultant referred her to the rheumatology clinic.

• Bones & joints >> Rheumatoid Arthritis >> Disease duration 0-5 years >> Sandra - Interview 63 >> Sandra finds the exchange of information and ‘little tips’ though the chat room useful and reassuring. She has been contacted and replied to RA patien

Sandra was diagnosed in April 2010 and her current rheumatoid arthritis treatment includes: Cimzia (certolizumab pegol), Methrotrexate, Sulfasalazine and Hydrochloroquine. Sandra’s consultant talked to her about reducing and eventually phasing out the last two drugs. She also takes painkillers; Diclofenac and Co-Codamol and Amitriptyline at night time.

• Bones & joints >> Rheumatoid Arthritis >> Disease duration 0-5 years >> Emma - Interview 61 >> Emma finds the internet useful and accessible but the most important thing was to know that she wasn’t the only young person having to cope with RA. S

In 2008, aged 21 Emma was diagnosed with rheumatoid arthritis (RA). Currently, she is on a combination therapy that includes Sulfasalazine, Methotrexate and Naproxen as a painkiller and a new biological drug called Cimzia (certolizumab pegol). The plan is to eventually reduce her RA medication to Methotraxate and Cimzia only.

• Bones & joints >> Rheumatoid Arthritis >> Disease duration 0-5 years >> Linda - Interview 60 >> Linda uses the internet mostly to find about complementary products but the leaflets provided by her rheumatology clinic have been one of her main sou

Linda was diagnosed with rheumatoid arthritis (RA) in April 2010 and she is currently taking part in a clinical trial for Golimumab. This therapy, has significantly improved Linda’s quality of life. She no longer has flares ups that had previously affected her working life. She is awaiting a decision from her PCT as to whether they will pay for her to continue having this treatment.