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Rank: Member
Groups: Registered
Joined: 4/15/2011
Posts: 19
Location: Orpington, Kent
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Hi everyone My name is Sarah and I was diagnosed in March (on my 46th birthday, in fact. Marvellous) with RA. Things seem to have happened so fast that I am having some trouble getting my head round it all to be honest. I and originally gone to the doctors because I had suffered for a while with what I thought was carpal tunnel syndrome. I was waking every morning with totally numb hands. Then they began to ache during the day and within a few days the pain in my wrists and hands was waking me during the night. I then woke one morning and couldn't move my right hand at all and well, the rest is (recent!) history! I have been a nurse for 28 years but this doesn't help! I don't know anyone else with RA. To be honest, i am feeling a bit sorry for myself at the moment as everyone, including family and friends, are quite dismissive of it. I am sorry to have started off like this but I feel a bit lonely at the moment and I am so glad I have found this forum! I have been started on methotrexate and am currently on an increasing dose (at 12.5 mg now) . The main problem I have is that I have been told by my GP that I can only take paracetamol for the pain, which is useless! I am married with a 16 year old daughter. Thanks guys! Sarah 
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Sarah
Welcome to the Forum you will this forum excellent for all sorts of answers, questions happy times
and moans. Don't feel lonely again Sarah, all of us on here are here to listen. .
I am Rose aged 57 from Somerset married and 2 children. I was diagnosed late 2008. Been on mtx, sulph, lefln
and been accepted to start Humira, but I have been very unfortunate as just getting over a 3rd
infection, so not started the inject yet, but they are in my fridge ready and waiting.
Keep posting
Rose
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Rank: Advanced Member  Groups: Registered
Joined: 9/5/2010 Posts: 364 Location: mid glamorgan
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Hi Sarah
Welcome to the forum but so sorry that you have RA, please dont feel lonely now especially on here as I have found everyone so supportive and understanding and everyones welcome to have a good old moan... Anyway Im Ceri 43 and diagnosed 2 years ago still not under control and currently on 20 mtx and recently started infliximab (3rd dose today).
I know what you mean about family and friends, I dont think anyone really understands the extent of this disease unless they have it! My family, husband and 3 children (23.22 and 18) are very supportive but still dont understand why Im not better yet!
I cant understand why your GP hasnt given you stronger pain relief, Im on etericoxib anti inflams, tramadol and co-codamol daily! I would go and see someone else if you can..
I really hope the mtx starts to work soon and you get some decent pain relief, keep posting and look forward to getting to know you Love Ceri x
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Sarah Welcome to the forum, its good you have found us as we all understand what each other is going through. I think the dismissive attitude is rather the norm unfortunately, I just don t think people can get there heads around the level of pain and all the other things we have to endure. Like Ceri I ve had it for two years and also not under control, I started infliximab last November and recently changed from leflunomide to methotrexate to hopefully improve things more, I m positive I ll get there in the end  I certainly can t understand your GP s attitude either with regard to pain control, I have had to push throughout for stronger pain control from my GP I just don t think they understand just how painful it is, if they knew I m sure it would be a different story. Keep us posted. Julia x
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Rank: Advanced Member Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Sarah Welcome to the forum, its good you have found us as we all understand what each other is going through. I think the dismissive attitude is rather the norm unfortunately, I just don t think people can get there heads around the level of pain and all the other things we have to endure. Like Ceri I ve had it for two years and also not under control, I started infliximab last November and recently changed from leflunomide to methotrexate to hopefully improve things more, I m positive I ll get there in the end I certainly can t understand your GP s attitude either with regard to pain control, I have had to push throughout for stronger pain control from my GP I just don t think they understand just how painful it is, if they knew I m sure it would be a different story. Keep us posted. Julia x
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Rank: Advanced Member  Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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Hi Sarah It is a terrible time for you right now. It is very difficult to be told you have RA and also very scary but you are not alone and I am so glad you had the courage to join the forum. It is the best thing I have done. I am Sheila, 60 years old. I have been diagnosed 9 yrs. I have been on mxt for 9 years. It is difficult for your family too as they can't understand how you are feeling. In some ways it is a very lonely illness...but you have found us!!!!!!  I have only been on the forum for a couple of months but I have made some great friends and everyone is very supportive. You will have so many questions to ask and you can ask us anything. No-one judges and everyone moans about their condition. So feel free girl. Have a good old moan and ask away. I look forward to speaking to you again Love Sheila x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Sarah,
Welcome to the forum! You need never feel alone with RA again now you have found us.
You wil get lots of support and advice on here, where we all know exactly what you are going through. We all have the problem of others not understanding what a painful disease RA is, I suppose the only way to understand it is to have it.
I am 61 and have had RA for 10 years, now taking mtx and humira.
I am married and we have a 22year old daughter.
Looking forward to getting to know you.
Love, Doreen xx
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Rank: Advanced Member
Groups: Registered
Joined: 4/12/2011
Posts: 79
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Hi Sarah, We seem to be newly diagnosed and following a similar start on MTX. I am on 10mg with a view to increase this. Has anyone discussed combination therpay with you as this seems to be the latest thinking to aggresively tackle this disease?
I have been started also on Hydroxychloroquine, 2x 200mg daily.
Luckily not too many side effects so far. Mild diarohhea and feeling slightly drowsy (only today).
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 1,524 Location: W. Yorkshire
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A warm welcome to the forum---you should never feel alone again now! How you are you feeling right now is perfectly normal. Paracetamol I would think would be as much use as a chocolate fireguard! A lot of us are on diclofenac and cocodamol for the pain and inflammation. Do you have Rheummy nurse you can ring? Have you been offered physio and OT from your consultant? Have you had a depo injection? YES I'VE CHANGED, PAIN DOES THAT TO PEOPLE.
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Rank: Member
Groups: Registered
Joined: 4/15/2011
Posts: 19
Location: Orpington, Kent
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Thank you everyone for you kind words! I feel better already knowing there is a place to ask questions, make friends and have a general rant and rave! ;-)
Darshin! Yes, we are both new and starting on MXT! The doctor aims to get me up to 25 mg apparently. There has been no. Mention of combined therapy as yet. I will discuss this when I go next. As regards my pain, I was told by the GP that I could only take paracetamo as NSAIDS can cause toxicity when taking MTX but listening to you guys saying that you take diclofenac etc I am going back to get something stronger!! It's my wrists, fingers and feet that are really painful. My feet constantly feel like I've just run a marathon in stilletoes! My left index finger is painful and resembles a butchers choice pork sausage!!
I am a paediatric nurse and work in a school so am on my feet ALL day so that doesn't help! Anyway... The sun is shining , summers coming and I'm going to adopt an optimistic attitude as I'm certain that will help!
Thanks again everyone! Have a lovely weekend in whatever you're doing!!
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Rank: Member
Groups: Registered
Joined: 4/15/2011
Posts: 19
Location: Orpington, Kent
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Hi Julie!
You're right.. Paracetamol is as much user as a chocolate fireguard!! I have not be given a number for a nurse nor have I been offered a physio or OT referral. My GP is referring me to a different rheumatologist at the moment( long story!) so I'm hoping I will get all those things sorted in the next few weeks. Meanwhile, I'm going to take it upon myself to take some diclofenac for my pain ( got some left from knee surgery last year) !
Thanks!!
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
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Sarah
Hello and welcome to the forum but sorry you have RA. It sounds as if your GP does not have much training in RA if you don't mind me saying so and has only looked up the contraindications for Methotrexate in his book. You should definitely be taking an anti-inflammatory e.g. Diclofenac or Naproxen. I take the latter along with a stomach protector (Omeprazole) and it has helped me in keeping the inflammation down. If I forget even one dose then I know about it in hours.
Hopefully you will get to see your new Consultant soon as it is important that they tackle your RA as early as possible. The earlier they sort you out the less joint damage you are going to get.
Take care and keep posting.
Jackie
xx
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Rank: Advanced Member
Groups: Registered
Joined: 5/22/2010
Posts: 51
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Hi Sansley,Welcome-Co-codaemel 5oomg may be what you want to start with,along with ice-pack on the limb what is most painful.Rest,rest & more rest will help ease the pain.Good luck & keep strong.Valerie-R
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Rank: Member
Groups: Registered
Joined: 4/15/2011
Posts: 19
Location: Orpington, Kent
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Thanks everyone!!
Sarah;-)
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Sarah,
welcome to the Forum .. when first diagnosed it's such a shock, i felt like i'd been hit with a sledge hammer and managed to lose over half a stone in a week with the stress.
it is a lot to come to terms with, and to be honest a year on i still haven't truly come to terms with it other than my pain tells me different.
unfortunately lots of people mistake RA for Osteo or " a touch of Arthritis, and to be honest i didn't know much about it other than Children can get it.
Methorexate is the gold standard drug most of us start on, although it some parts of the country they start you on 3 meds and work downwards if you are doing well.
unfortunately for me Methotrexate and Hydroxy haven't worked so i a waiting to start on the next stage i.e. Humira.
i have a wonderful Rheumatology Department and Rheumy Nurse but i have learned so much on this Forum, i now know how long a drug can take to work or not work at all and you have to start all over again.
i wish you well and hope that the Methorexate kicks in for you ( you have to give it 12 weeks )
keep posting and read old Threads as they are so helpful.
Suzanne x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Hi Sarah, I am Barbara diagnosed in July 2009. Currently on 25mg methotrexate and hydroxychloroquine 200mgx2 also tramadol and paracetemol for pain. I agree with everyone else, you need more than paracetemol, some GPs have no idea do they. I wondered if you are in a special needs school?? I worked in special needs for almost 10 years and we had a nurse on site, thats why I ask I hope you can get some better pain meds, good luck with the mtx, it takes a while to get to a level of meds that suit you. You will find the forum really friendly and helpful, even after 2 years I find that I need to ask lots of questions and use the forum to get the answers. Take care BARBARA
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Rank: Advanced Member  Groups: Registered
Joined: 12/6/2009 Posts: 177
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Hi Sarah What rotten luck to be told on your birthday that you have RA, or any other day come to that! It's good that you have found this forum as you will get a lot of support and advise from all of us on here. I'm Shirley, nearly 50, married with 3 children and 3 Grandchildren. I was diagnosed 2 years ago and have been through 5 of the DMARDS and currently on MTX 15mg, folic acid 6 days per week, amtriptyline, arthrotec , cocodamol, morphine when needed and humira, although i have had to stop humira as i have vasculitis and folliculitis and on anti biotics at the moment. Waiting to see what rheumy suggests next. Good luck with your treatment and try not to let the RA get you down. I feel really down today as i don't know whether i can continue on Humira and i have already failed on so many drugs. I have had a potter in the green house although it's difficult when your hands hurt so bad. I also have found that phorpain gel that my GP gave me for rib pain offers some relief on other joints too. Good luck with your treatment and don't forget we are all here for you. Love Shirley x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Hi Sarah, and a warm welcome to the forum - I`m very pleased you found us. As others have said, you do need something stronger than paracetamol until your MTX kicks in. A nice steroid injection would help you as well, until things are better controlled. I`m Kathleen, aged 60, and currently take humira. Do keep posting, Kathleen C x
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Rank: Member
Groups: Registered
Joined: 4/15/2011
Posts: 19
Location: Orpington, Kent
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Thank you all!! You are all very kind and extremely helpful!!
Barbara.. Yes I do work in a special needs school! You are right!
I will keep posting x
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Rank: Advanced Member  Groups: Registered
Joined: 11/20/2010 Posts: 244 Location: Cornwall
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Hello Sarah,
Welcome to the forum where you can get all the friendly advice and support you're going to need. I'm Sara 45 married, no kids, our choice so all good there, live in Cornwall and was diagnosed in November. Been on 15mg of MTX since and they say its working, all my bloods say that everything's under control but it doesn't feel like it some days! On your feet all day, same here, I'm getting some orthotics tomorrow so I'm hoping for bionic feet from now on! Perhaps an orthotics referral may help?
Sara
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