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Rank: Newbie
Groups: Registered
Joined: 3/29/2010
Posts: 1
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Hi everyone. My name is Mel I'm a 33 year old Mum of one and have just been hit by the bombshell that is the RA diagnosis. I am of course absolutely gutted and full of questions and fears about how I am going to cope with work, my daughter and having a life etc and I am so glad that there is somewhere like this to come and talk to people who are going through the same thing. I am really interested in the care that you received after getting that first diagnosis as I have been pretty underwhelmed with what has happened to me so far and wondered whether this was the norm. I was finally diagnosed in March after being told for a long time that the problems I was having were just mechanical foot problems due to the extra weight carrying my daughter before and after her birth. As soon as the pain in my hands started I knew this couldn't be the case and so in one way the diagnosis wasn't that much of a shock and was a relief to at least know what the heck was wrong. When the doc told me it was RA she gave me a few leaflets and said she would book me in to see the nurse, the pharmacist and a physio and this would give me time to decide between methotrexate and sulfrasalazine. I didn't realise that all these appointments would be separate, meaning that I am sat here now no further on and with no sign of the medication that surely I should be starting as soon as possible. I'm in a fair bit of pain now and have been counting down the days to my appointment with the nurse which is next Tuesday in the hope that I can also have another injection for the pain. I have left a number of messages on the 'helpline' for the RA nurses over the last couple of weeks but noone has come back to me and I just feel completely lost really, the only person who I have spoken to at length so far is the pharmacist. I'm trying to stay positive and know that these problems are nothing compared to what a lot of you are going through but it feels good to have let them out. Just read through what I've written and I suppose I've not been waiting that long with hindsight, but is just feels like forever when everything seems so unclear. Thanks for reading  and I'm looking forward to meeting you all.
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 1,524 Location: W. Yorkshire
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Hello Mel and a warm welcome to the madhouse! What you are experiencing at the moment is perfectly normal and we have all felt the shock you are in right now. I have to say that your 'care' doesn't sound at all satisfactory to me? I'm hoping you are going to see a consultant? I was first given diclofenac (an anti inflammatory)to tide me over till I saw the consultant who then put me on to my meds. I was also given access to a Rheumatology nurse and Occupational Therapy, Hydrotherapy and a Physio via the consultant. Are you on any meds at all right now? YES I'VE CHANGED, PAIN DOES THAT TO PEOPLE.
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Rank: Advanced Member
Groups: Registered
Joined: 2/26/2010
Posts: 271
Location: hampshire
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Hi Mel and welcome. Know how you feel right now, its a real bombshell, but once you get the help and advice that you should be getting, things start to calm down. This forum has been a lifeline for me as there is always someone to answer questions, send hugs and generally sympathise etc etc.
Really hope you get something sorted out soon,
best of luck
Heatherxxxxx
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Rank: Newbie
Groups: Registered
Joined: 12/8/2009
Posts: 7
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Hi Mel
I was diagnosed 2 years ago I went to the family doctor with sever pains in my hands, she said she would make me an appointment with a specilist,
A.S,P, and organized a blood test I saw the rumey doc two weeks later, she gave me a full pysical examination lasting half an hour. she then told me I had R.A.and aked me what was the most importent thing she could do for me. I said with tears in my eyes could you please stop the pain so she put me on diclafenac twice a day .75MGS and asked me to go back two weeks later when I had to sign my permission to be put on methatrexate 6 pills once a week to start and increased later over a period of time the pain gradualy went away. and I have had a good eighteen months in good health and I have been on a few trips while I am able two cause you just never know. been to america. austria. cyprus and of to scotland spring bank. so I wish you well on your journey back to good health and all the best for the future
Hope this helps
Graham
P.S my diagnosis was not stright forward as I am rumatiod negative
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Mel Welcome to the forum but sorry to hear that you have RA. Everyone here is very friendly and there is lots of support available. I am Lyn, married to Mike, we have four children and live in Lancashire. I was diagnosed with sero-negative RA 22 years ago and currently take Enbrel, Methotrexate, Naproxen and Prednisolone plus a few other bits and pieces. Have run the gamut of meds and have had several surgical procedures. Having had this dammed disease so long my experiences of initial care are worth nothing as things have changed for the better (perhaps!!) but I do feel that things should be moving a little faster for you. Methotrexate is the gold standard treatment for RA and is used on its own and as a combination therapy. Sulphasalazine has also been around a long time. I'm not sure you should be expected to decide between the two ... your consultant should make that decision based on your condition! At least Tuesday will soon be here and I hope you are given more information and much more help. It seems everyone receives different support depending on what part of the country they are in. I have regular access to my lovely GP and six monthly or so checks with the consultant rheumatologists. Just last month I discovered I actually have a rheumie nurse, news to me, but she hasn't been a right lot of use so far I have to say. That's about it unless I create a fuss  I would suggest you ask to see a Podiatrist who will be able to offer you advice regarding foot problems. Worth looking after from the start, you only get one pair!! Feet that is not podiatrists  Good luck on Tuesday, keep posting, I look forward to getting to know you better, Lyn x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Hi Mel, sorry you are having to deal with this, its always a big shock at first. I am barbara, married to Roy and 3 adult kids and one 16yr old daughter in school. I was diagnosed last July, still sorting out meds. My sister was referred to the rheumy in Februaary and only has her appt on 4 May!! they said they sent her one before but to the wrong address, even though she moved over a year ago.It always seems to take so long, I had lolts of problems getting my gps to accept something was wrong, even though my mum had RA, they just said its osteo, so live with it. I then waited 3 months to get the appt, they did the x rays and examination and bloods etc, then back again the month after to start the treatment, methotrexate at 10mg, am now on 20mg with 500mg sulphasalazine and 200mg hydroxychloroquine. Still hoping for some good results. I work full time looking after babies so its very physical too, but enjoyable!! Let us know how you get on, take care x BARBARA
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Rank: Advanced Member  Groups: Registered
Joined: 3/8/2010 Posts: 914
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Hi Mel,
Sorry to hear you have RA, I was diagnosed almost 3 years ago, I am married with 3 daughters. I was diagnosed within 5 weeks, and put on a triple therapy of Methotrexate, Sulphasalazine, and Hydroxychloroquine, and Folic Acid, Im no longer on the Sulphasalazine now and having been so ill in the beginning, I am much better now. Our RA team here are great. They are so efficient, with the consultants, every 6 months, the Rhuemy nurses, physios, OT's, and Podiatrists every 6 months. We have a helpline to call and and will be called back the day after if noone is available. I think we are really lucky here our doctors are very good too. I do hope you get things sorted out soon, take care Lorna xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Hi Mel, A very warm welcome to the NRAS forum. You must be feeling shell-shocked right now - it`s such a blow to be told you have RA, and absolutely normal to be anxious about the future.I hope they can move your treatment on a bit more quickly, when you do see the nurse, so that you can start your meds sooner rather than later. I was diagnosed over 4 years ago, but was given a steroid injection to help with pain & inflammation and was prescribed sulphasalazine immediately, as well as diclofenac and various painkillers. I was also seen by a physio & an occupational therapist, as well as having X-rays done of hands, feet and chest, and given a follow-up appointment, plus a rheumy nurse. They should do a chest X-ray if you are going to take methotrexate. It might help to writs down some of the questions you have, and take them with you to your appointment - a lot of us do this, and it`s perfectly acceptable. Take care, Kathleen x
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 216
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welcome to the forum, Mel........................I suggest you don't accept ANYTHING you aren't comfortable with from anyone at RA clinic, and you insist that you need answers NOW to any queries you have....it takes courage to stand on your own feet and jump up and down on theirs, but sadly you have to when they are as careless with you as you describe. This is sadly NOT unusual but is totally unacceptable and you don't need it. Hope you can find the strength you need to fight your corner, with love, Lxx Always be aware that what you do might hurt others........and if it could, do nothing without careful consideration of the consequences
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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Hello Mel from Melly theres 3 of us now i think. Im 38 RA lupus etc,oh deary no you need more explained that has been. i found this nras charity most helpful,alongside rheumy nurse. for 1st call my gp phoned nurse after that i do it and id make note to them why they not returning calls,thats not on for start. gps are usuallly good,find one specialsied in rheumatolgy a good help if not one whos able deal with Ra and medication most of them do. usally the more senior gp at your surgery thats who i usually see. pharmcists are good,ive had alot help from them. congrats on being a mumsy. keep reading ,posting nras also have alot info al latest. lv melly cuddly cats make my world seem so much more fun
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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hi
I am Jenni, I am 34 and have 3 children. I adopted my older 2 who are now 14 and 12 and then I had a birth child who is now 2.5yrs!
I have severe RA which is pretty rare as I understand less than 3% of RAers get it. Most people do really well on the medications and methotrexate (MTX) is the gold standard drug of choice.
When you do start it the leaflet is a bit scarey, but it is an immune system disease they are tackling and they need to hit the disease hard and early for the best results.
they will do regular bloods and keep an eye on you. you need to be a bit careful of coughs and things like that and head to the GP with signs of infection as you will have a job fighting things off.
you normally have a chest xray before starting MTX.
the sulphazalazine (SLZ) also works really well for a lot of people and normally changes your wee orange!
All of these drugs take a while to kick in, they can give you a shot of steroids to make the pain and swelling calm down while the meds start to work. This is called a depomedrome injection and the GP can do it.
Most hospitals have an emergency rheumatology clinic I would ask to be seen at one and get started on the meds, get the XRAY and base line blood tests underway. Ringing the consultants secretary or the rheumatology nurses and ask to be called back and seen.
Sadly, rheumatology is at the bottom of a very big pile of medical priorities. you have to fight hard for services and be prepared to make a nuisance of yourself.
Love
Jenni
PS any practical tips you need- I can try and help- I have got pretty good at managing Bernice and the older 2!how to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Hi Mel
Welcome to the forum, although I'm sad you have to have RA to join our merry band!!
I don't think there is anything left for me to say - everyone has said it all!!
I'm 66, have had RA for about 8 years. I'm married to Steve and have one daughter, Lucy, lovely s-i-l and tw beautifyul grandchildren.
Keeping everything crossed for your appointmet on Tuesday.
Lots of love
Jeanxxxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Mel,
Welcome to the forum!
I am 60 and have had RA for 9 years, now on mtx and humira.
Hope you can get your treatment sorted out soon.
Looking forward to getting to know you.
Doreen xx
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 854
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Hi Mel.
I am so sorry that you have RA and are encountering the usual communication difficulties. When you do get to see a consultant please tell him/her that you received no call back to your message left on the help line. This is unacceptable but has become normal for most of us. Either that or there is a long delay in responding.
Your GP could give you a steroid injection to help you over this waiting time. Are you seeing him/her regularly?
The others have covered much of what you need to know so I will wish you the best of luck in getting an appointment and welcome to the forum.
Eleanor x
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 336
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Hello Mel and welcome, I'm sorry that your Docs seem to be a bit on the slow side I'm sure that you can see there are big differances in treatments and timeings. In the present day if you read the information on RA things are supposed to be improving in getting treatment as early as possible because it has better results in the long run. I hope that they get you sorted out soon. Take care.
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Mel Sorry to hear that the RA nurses have not come back to you, and of course the fact that you have RA. I live in Somerset and was diagnosed 18 months ago . I was on metho and sulph but was taken off them as they upset my liver. Be strong, you will get through, I have been off work now for 6 weeks and have been very low have had a large flare and waiting pateintly to go on new drugs. I must say that I have a great Specialist Nurse who answers all my moans and groans and stops me from being anxious. Hopefully when you see them next week you will also have one. I am new to the NRAS having joined just 1 week ago and I find the help and advice is invaluable. Good luck Rose
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 838 Location: Nottinghamshire
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Hello Mel
My name is Paula and I was diagnosed just under two years ago. I was put on sulp......... (don't know how to spell it) and have up until the last few months done well on it, no side affects what so ever, not even the orange wee. I have now been offered a choice of two other DMARD's to take, my consultant thinks I now need to have something else added.
When I first was diagnosed and started to read up about RA on the internet I found most of the information available and there is loads, didn't make good reading. Now two years down the line I realise that it is not the end of the world living with RA and I have been very lucky with how controlled my illness has been.
I see alot of new people posting on here like you have, being just diagnosed with RA asking for advice and worrying about things, then after a while they don't post anymore. I like to think that they are in a good place with their RA and their lives have returned to normal.
I don't know if anyone's mentioned this, but if you ring the NRAS helpline up they will put you in touch with a volunteer who is in a simular postion to you and they will ring you up to have a chat. I am sure that most of us on here would either by email or phone if you felt the need, I know I would. Because of this forum I have made many new friends, some of which I had the pleasure of meeting at the get together last week.
Please take Jenni up on her offer of advice re looking after babies/toddlers when coping with RA. I sometimes marvel at what advice/tips she has given to others with small children.
Let us now how you get on.
Love Paula x x
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