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Rank: Newbie  Groups: Registered
Joined: 1/31/2011 Posts: 2 Location: London
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Hello All,
I have just joined. I am 48 and my RA appeared quite suddenly 2 years ago. I knew at once that it was RA rather than osteo because it runs in the family. My father has had pretty well every joint pinned or replaced and his mother suffered too. It started in my left knee and that is stil the most painful joint. But it is now in both knees, ankles, wrists and hands. I also have twinges in my shoulders and neck. I am in the midst of a horrendous flare up at the moment. I have been off work nearly 2 weeks and not returning for at least 1 more. The pain has been appalling. My doctor has given me stronger painkillers, containing slow-release opiates and a different anti-inflammatory. They do help but I am not yet pain free. I ca only walk very short distances and I can't stand more than a few minutes.
I am seeing a rheumatologist in a couple of weeks and I'm hoping that they will finally agree that I have RA. My anti-nuclear antibody tests were positive but the rheumatoid factor is not very high.
At the moment I am fed up, in pain, and sleeping very badly.
Still, it can only get better!
Best wishes to all,
Owlwoman
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi! Welcome to the forum. A great place to be for support and information; lots of folk, lots of knowledge and a wealth of tried and tested experiences! I'm Lyn, married to Mike, we have four children, Abby 23, Ian and Jake 17, and Louis 16. All four in various stages of education! We live in Thornton Cleveleys in north west Lancashire. I was diagnosed with sero-negative RA nearly 23 years ago and have since run the gamut of medication and had several surgical procedures along the way. Currently on Enbrel, Leflunomide, Prednisolone and Naproxen, Amitriptyline and a jolly assortment of pain killers! Struggling at the moment after knee surgery last summer, two lots of knee aspirations and joint injections in 7 weeks and a further referral to Orthopaedics. But heyho... Once you are seen by a rheumatologist they will be able to assess your needs and get you started on a suitable treatment to control the symptoms. I'm more than a little surprised your doctor hasn't referred you to a specialist more quickly so that if necessary you could be put onto disease modifying drugs immediately and before the disease has chance to take hold and spread to many joints possibly causing irreparable damage. I'm sure there are guidelines setting out maximum waiting times for rheumatology patients. My son was referred on January 11th and was seen today; excellent service. You do seem to be in a bad way and I hope you get some relief very soon. Once you are on the right drugs you should start to see an improvement. Look forward to getting to know you Lyn x
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Rank: Advanced Member  Groups: Registered
Joined: 3/8/2010 Posts: 914
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Hi Owlwoman, What is your name, I am Lorna I have had RA for just over 3 years. Like you it came on very abruptly after a flu jag and I was very ill with it as it affected almost every one of my joints. The bonus was it was picked up very quickly and I have been on the triple therapy and keep very well now, as long as I don't over do it. Welcome to the forum, everyone is kind and helpful and always full of answers..... been there, done that, and wore the tea shirt.  Take care and hope you get seen soon. Lorna
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Hi Owlwoman, and welcome to the forum. Sorry things are so tough for you at the moment, and I hope the pain eases soon. Once you see the rheumatologist he/she will put you on a drug regime, and when they kick in you should feel better. The bother is, though, they often take a while to work, so you could ask the rheumy if you can have a steroid injection, like depomedrone. You would probably be given an IM into your buttocks, and that should help until the drugs start working. When I was diagnosed I had a couple of these injections, and the relif was immeasurable. If you get one, try and rest for 24 hours to give it a chance to work. I`m Kathleen C, currently taking humira and a few other meds. I was diagnosed 5 years ago, and live in Durham with husband Nick. We have 2 sons & 2 lovely grandsons. Do keep posting - we will help when we can. Kathleen x
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello and Welcome,
Welcome to the Forum. I hope that you get the closure of recognition shortly. I hope
the pain killers help you. Steriod injections are good as well.
I am Rose from Somerset aged nearly 57. Waiting to go on TNF's within
next couple weeks. I have had a long spell of work and just returning but
I cant see me getting to full time hours. I understand the pain the fatigue and
the low mood. I just tell myself by giving myself a good talking to
Take care and keep posting
Rose
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Rank: Newbie Groups: Registered
Joined: 1/31/2011 Posts: 2 Location: London
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Thanks to all. I am Susan and I live in South East London. Single, no children but 2 cats. I have been on tramacet and naproxin for the last 2 years or so. Now on Targinact and Etoricoxab. My GP is lovely but he doesn't really know much about RA. I have had my left knee x-rayed a few times but nothing else. I want to be properly assessed and then to get advice on how to handle this condition. I am overweight but I can't really exercise. I would like to increase my strength and flexibility as wel as lose weight. I always knew that I would probably get RA. I'm thankful that I've had 46 years without it! My sister (nearly 3 years younger) is just starting to show symptoms. Some questions = what should I ask the Rheumatologist? What should they tell me? And what is the triple therapy? Best wisjes to you all, Susan
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Rank: Advanced Member Groups: Registered
Joined: 3/8/2010 Posts: 914
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Hi Susan, The triple therapy is a combination of RA drugs used together to aggressively treat RA and hope for remission. I was on Sulphasalazine, Methotrexate and Hydroxochloroquine as well as Folic acid. I have responded very well to these drugs but I was diagnosed within the first 5 weeks of getting RA which I think made a huge difference to the outcome. I am still on Mtx and Hydrox and Folic acid but the Sulph was stopped about a year ago. You should definitely be referred to a Rheumatologist sooner than later to prevent joint damage. Hope you are seen very soon. Lorna
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi again Susan I think most importantly on your visit to the rheumatologist you need to get a definite diagnosis. Pain killers and NSAIDs, the medication you are currently on, will not treat RA but will only temporarily curb the symptoms of pain and inflammation. You need something to slow down the progress of the disease which causes joint damage. RA is a systemic auto-immune disease manifesting as stiffness and swelling in the joints and severe fatigue. I would think it unlikely, from my own experience, that you will be pain free until you are prescribed the combination of treatment that is right for you. We are all individuals requiring different meds to kick this horrible disease into touch. NRAS have some very useful publications for the newly diagnosed; Managing well-Living with RA and Newly Diagnosed -A guide to your next steps. Both very informative, so well worth ordering copies. Might you be able to get an earlier appointment with rheumatology? It really isn't advisable to leave a flare untreated. It is during these periods that most joint damage occurs. I suggest your sister also gets a prompt referral as the sooner the disease is treated (as in Lorna's case) the less chance there is of damage and better prognosis overall. Lyn x
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Rank: Advanced Member  Groups: Registered
Joined: 10/21/2010 Posts: 69 Location: North Devon
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Hello Susan Owlwoman My name is Julie and was recently diagnosed with RA in October 2010 although like you have RA inthe family and long put my joint problems down to RA but my GP like yours didn't know much about RA and continued to treat me for OA with anti inflammatories. MY RA factor was always borderline but my swollen hands knuckles and knees told a different story. It is so frustrating I got to the point where earlier in the year I had to go on anti depressants because I was in so much pain, and didn't sleep well at all. I couldn't get anyone to understand the unbelievable pain. The number of times if said THIS IS NOT JUST ACHES AND PAINS AND I AM NOT GETTING OLD!! THANK YOU. Any way my life got immeasurably easier getting the help and support from this forum, lovely lovely people, such a wealth of experience and great comfort. So Welcome you are now in a good place! I live in Devon on a Farm with my partner David, daughter Teresa 23 and stepson Ben 18 and life is a struggle every day without RA. (Sorry all us farmers have degrees in moaning about our lot). I have been on Methotrexate now for 6 weeks and I know it is starting to make a difference - life was hell between the DX in Oct and starting the Methotrexate in January' Like the others have said the RA drugs are treating the problems and not just the symptoms. And I went back on the anti-depressants ... But things are looking up for me now and I am sure they will for you once you get sorted. Just keep at them doctors hospital whoever and you will get there. Look forward to your postings. Take care all Julie X PS If I ramble on too much... just tell me  Good advice is best followed by the art of listening
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Rank: Advanced Member
Groups: Registered
Joined: 5/19/2010
Posts: 384
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Hi Susan,
So sorry that you are feeling poorly at the moment, but once you see the rhummy hopefully things will start to get better and like so many on here once the drugs start to kick in life is so much better.
I'm Anne 50 years old with two boys age 19 and 20 and a foster boy aged 9, I live in Kent on the borders of South East London.
So pleased you have posted, let us know how you are getting on.
Anne x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Susan,
Welcome to the forum!
Sorry to hear you have gone so long without seeing a rheumatologist.
I am 61, married with one daughter and have had RA for 10 years.
Looking forward to getting to know you.
Love, Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Susan,
just to say welcome aboard ... you've been given lots of advice already.
can only add once you are seen my the Rheumatologist then you should get onto the proper medication. fortunately i was diagnosed quickly and have fantastic support from my Rheumatology Clinic.
still not on proper meds yet, but due to start Anti-TNF's with the next month or two.
i'm 57 married with a grown up Daughter.
keep posting and let us know how you are.
Suzanne x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Hi Susan
Welcome to the forum - most of us are a bit "mad" but it does help when you have RA!!!!
I'm so sorry to hear you still haven't seen a specialist rheumatologist but, hopefully, at your forthcoming appointment you will be given the correct meds to slow down this wretched disease.
I'm 68, still think I'm a teenager and have made some absolutely amazing friends on here!!
Keep posting and let us know how you get on at your appointment.
Love Jeanxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
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Hello Susan
Welcome to the forum but sorry you have RA.
Just because you have a low RA factor does not mean that you have any less disease. I am also 48 and was diagnosed two years ago after becoming very ill suddenly. Even though I have a low RA factor, I have just had to have a knee replaced as the knee had been completely eroded so this is no indication on how bad your RA can be.
You really need to see a RA Consultant as soon as possible not only to get the right diagnosis but also to get your pain under control. It really is trial and error trying to find the right medications for you but you will get there. I would also ask for a steriod injection to tide you over as many people have suggested. They really do help.
You will find everyone on this forum helpful and supportive and you can have a laugh at the same time so keep posting.
Take care
Jackie
xx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 714
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Hello Susan
Welcome to the forum but sorry you have RA.
Just because you have a low RA factor does not mean that you have any less disease. I am also 48 and was diagnosed two years ago after becoming very ill suddenly. Even though I have a low RA factor, I have just had to have a knee replaced as the knee had been completely eroded so this is no indication on how bad your RA can be.
You really need to see a RA Consultant as soon as possible not only to get the right diagnosis but also to get your pain under control. It really is trial and error trying to find the right medications for you but you will get there. I would also ask for a steriod injection to tide you over as many people have suggested. They really do help.
You will find everyone on this forum helpful and supportive and you can have a laugh at the same time so keep posting.
Take care
Jackie
xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 312
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Hi Susan, Welcome to the forum and I am sorry that you have R.A. I hope that seeing a Rheumatologist will quickly help with the symptoms you have. I am Fiona, 53, and I live in Devon. I have three grown up kids and one grandaughter. With kind regards and best wishes, from Fiona
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 346
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Hi Susan, welcome to the forum. You have come to the right place for support and friendship to help you cope with ra. I have had ra for 15 years and am 53 and have a negative rheumatoid factor. Hope you get some effective treatment sorted out at your rheumatology appointment.
Bevxx
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Rank: Advanced Member  Groups: Registered
Joined: 11/20/2010 Posts: 244 Location: Cornwall
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Hi Susan,
Welcome to the forum, I don't know how I would have got through the last few months without my new friends on here, everyone is really great. I hope you get the help you need quickly, I found once I had the diagnosis last November it was like a whirlwind of appoinments and drugs, feelings and a right old roller coaster. So keep posting and we'll all try our best to help you retain your sanity! Don't worry about what to ask at the the appointment, that will all come later when you think I should have asked this or that, then make a list and then ask. Even though you think you know it anyway, I was well aware that I more than probably had RA before I went, just the fact of someone sitting there telling you is a bit of a shock and you'll probably need time to get used to the idea, I did and still am! Good luck
Sara
x
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Rank: Advanced Member  Groups: Registered
Joined: 12/7/2009 Posts: 89
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Hi Susan, welcome from me I'm Kathleen 61 on my own and live in North Yorkshire.
Think we must have members from all over the country, it's a brilliant network for friends and information.
Take care and keep posting, Kathleen xx
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Rank: Advanced Member
Groups: Registered
Joined: 8/1/2010
Posts: 255
Location: hampshire
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Hi Susan, I'm Sue 59 and a teacher. I was diagnosed in Oct 09 and am doing fairly well on mtx and hydroxy. You will find this forum a great place for support, advice and somewhere you can have a moan if you need it. Keep pushing for that appointment. With all the economies happening in the NHS (My daughter is a NHS administrator so I know) it is easy to find appointments slipping further away. Write down everything you want to ask. I found it really useful to keep a diary of my symptoms so that I could be really clear about what I needed to tell the doctor. Good luck and keep posting. Sue
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