Hi All

It’s so nice to find you all. Here’s my story.

My name is Agnes. I am 40 years old and I have was diagnosed with RA two weeks ago. Compared to some I have been relatively lucky. My symptoms first started around at Christmas 2009. I started with a stiff index finger on my right hand and feeling just generally tired after a session at the gym. The symptoms soon spread and by early Jan I was suffering from sore feet and a stiff neck – so much so that I couldn’t really turn my head round. My GP was good and did some basic blood tests which came back with raise RA of 57 and high ESR marker. I was put on a course of anti-inflamatories and after a week I was suffering from morning stiffness, swollen hands, sore feet and shoulders.

I was then referred to see a rheumatologist at my local hospital. Sadly the urgent referral took 4 weeks to come through. In the meantime I was put on a course of prednisolone. The rheumatologist took one look at me and said well obviously you have RA (not the best beside manner ). I was given two options. Option 1, go on the standard treatment of MTX or Option 2, join the research trial at the hospital which is to take MTX together with etanercept to aggressively treat the disease from the start. I would need to come off the prednisolone (I am currently on 10mg per day). I am dreading coming off the steroids because they have given me great relief. The aches and pains have gone and I can move around freely. I am a student teacher and I can’t imagine how it would be to keep walking around a school when I was in the pain I was in one month ago. Last month I was struggling to hold my toothbrush to clean my teeth and putting on socks was unbelievably difficult.

I have decided to go on the research trial since it seems to give me the best chance of putting the RA into remission. My head is in a spin with everything not least because I will soon have to start looking for a job as my PGCE finishes in June and I have no idea how my RA will affect my ability to work in the immediate future. I’m fine at the moment (though I do have a sore jaw which makes eating a delight ) so I am not sure if I should tell any potential employer about my RA or if I should wait to see how I get on with the meds etc.

I've finally accepted I am going to have to cancel my gym membership. I haven't been since Christmas and the RA coupled with having no time due to my teacher training means I'm just not using it as much as I used to. Such a shame given that I like to lead an active life.

Sorry this is a bit of a long introduction from me but I have so many questions.

I look forward to chatting to you all.

Bye

A

Morning Agnes

Welcome to the forum. I am Lyn, married to Mike and we have four children. We live in Thornton Cleveleys, Lancashire. I was diagnosed with RA almost 22 years ago and have run the gamut of medications and surgery. I'm currently on Enbrel, Methotrexate (temporarily suspended due to problem!), prednisolone, naproxen and a few other bits and pieces to keep things ticking over!

Sorry to learn of your problems but I have to say the route the medics have got you on has been done amazingly quickly. Without wishing to question their findings I would have thought their diagnosis of RA in such a short period since onset of the symptoms was slightly dubious. In the initial stages the symptoms you presented with could be representative of several rheumatology problems**. Raised ESR isn't conclusively RA; it is simply a measure of overall inflammation in the body and is used only as a guide.

Personally and from my experience a four week appointment for anything other than a life threatening condition is absolutely brilliant. You will find many on here have had many months to wait for a first appointment never mind a diagnosis too!

Sorry, but I must seem like I am a total misery but I would hate you to feel that you have been given this lifelong prognosis without full investigation. I would also be concerned that you have been put on a trial for Mtx and Enbrel before treatment with Dmards have been tried. It's all very well aggressively treating a condition from the start but these are very highly toxic drugs that in themselves can cause huge problems. I have been on Enbrel and Mtx myself for seven years, starting with a trial in the early stages as the combination was fairly new when I went on it. I appreciate ‘trialling’ continues especially with early diagnosis and aggressive therapy but you could be on these drugs for the rest of your life! There are probably at least half a dozen other highly effective therapies available. Please ensure that you have been given all the facts before going ahead!

You really must tell potential employers of your condition. You will undoubtedly require time off for regular blood tests and Rheumatology appointments. You will probably have to sign a declaration about the state of your health and referrals in the last two years etc. It will be tough but do persevere. Well done on getting so far with your PGCE, not long to go!

To round off I do hope things go well for you. You will find lots of information and lots of friendly, helpful people on here so do please ask lots of questions! The choice of treatment regime is yours but well worthwhile being aware of all the options. A difficult decision to make, good luck!

Look forward to chatting with you.

Lyn x

Edit "symptoms you presented with could be representative of several rheumatology problems". I meant to add that a friend of mine presented with typical RA symptoms much as you describe. Ten months later and after treatment with Prednisolone, anti inflammatories and pain killers all symptoms disappeared. That was 12 years ago and she has had no further recurrence and no joint damage. The rheumatologist said afterwards that it was viral arthritis and not rheumatoid after all. She wasn't aware that she had had a virus but it was enough to cause a significant problem!

Hello Agnes,

Glad you have found us but always a shame it takes an RA connection to bring us together...
I have found this forum to be like an extended family and so supportive - either just reading or contributing it seems empowering just to know we're not alone in all this....
sounds as if the medics are working quickly with your diagnosis - I hope they are soon able to support you with the treatment you choose,
from personal experience I know it can often take up to a year for diagnosis, even more in some cases so I hope you are well supported - your gp sounds
very much on the ball - do they have a special interest or understanding of RA?
Hope they support you really well to make the right decisions for "you" xxx

There's no question - this is a scary time with big decisions to make and uncertainties about the future. I remember my diagnosis seeming a bit "to the point" too but what i took away from that diagnosis appointment was the need for a fighting spirit and feisty attitude - not always easy i know but kind of essential - you are still the same "YOU" just maybe now with a need to approach things slightly differently from now on... Saying that, I cried all the way home after diagnosis - partly shock perhaps, partly relief to know what "it" was.... plus i think i was born "feisty" so have adapted quite well...

...it is a time that can be life changing and definitely a period of adapting and reassessing plans....
I was treated aggressively with sulphasalazine once diagnosed - that was 1998 so this seems to work for me most of the time......

Ive gained a couple of promotions since diagnosis - employees with disabilities have a LOT of rights - even at interview stage so I really hope you feel
able to continue with your teaching if this is what you want to do xx it's not always easy but i think you should disclose your diagnosis in order to get the support you are entitled to.....

There's lots of help out there with practical equipment - i have not found anything for toothbrushing but i remeber this problem at first diagnosis - i always buy the chunkiest toothbrushes i can find these days...
NRAS has links for websites providing lots of practical solutions - Funky Arthur is a good one - the link is on the NRAS website

Please keep posting Agnes, hope it helps a little to know you are not alone,
Take care love from Liz xx

Hi Agnes

Welcome to our forum! We're a bit of a mad bunch on the whole but you will make lots of friends on here and get loads of help and support.

I am very much in favour of agressive treatment of RA from the outset. This has been done in America and several European countries for a few years and the success rates have been excellent. At the last NRAS Volunteer Co-ordinators conference in Leeds, one of the speakers (an eminent consultant rheumatologist) said that more and more rheumatologists are coming round to this way of treating patients. In some cases, after agressive initial treatment, some patients have been in remission for periods of months to a couple of years before further treatment was needed.

Can I suggest that you read up as much as you possibly can on this line of treatment and also ask NRAS where you can access the latest information and figures? It is hugely important that you know as much as possible before starting any kind of treatment.

Well done and many congratulations on being most of the way through your PGCE. Not long to go now until June!

As I'm retired (being an old dear of 66 coming on 67) I can't offer any helpful advice on work but I know all the young things on here will!!

Take care

Love
Jeanxxx

Hi Agnes,

Welcome to the forum but sorry you have RA.
I was also diagnosed quite quickly by my GP when I only had 2 fingers affected.(that was 9 years ago).
I have read recently that Prof Emery in Leeds is trialling early treatment with anti-tnfs and the results so far are encouraging.
I have tried most of the DMARDs and combinations of them over the 9 years and I am now on mtx and humira, the humira is the first drug to help me and bring my blood levels down to normal.
I would advise that you tell prospective employers that you have RA or it could go against you later on if you need time off for treatment etc.
Looking forward to getting to know you.

Doreen xx

Hi Agnes,

Welcome to the forum. Lots of support and information on this site. My occupational Therapist was only telling me last week that trials were taking place giving early aggressive treatment with the anti-tnfs. It seems that the is the current favoured practice and if trials are sucessful the NICE guidelines for prescribing anti-tnfs will be changed. I hope it works for you.

Julie

It was actually Prof Emery who told us about the agressive treatment in his clinics for recently diagnosed RA. Didn't know whether I should mention him by name! He s a very very well respected consultant.

Hi Agnes, i'm dawn. I was diagnosed with RA last year a week before my 39th birthday. Started with very swollen ankle then pain which went everywhere. Every joint was affected.Then i had very swollen feet! I'm married with two daughters and work 3 full days which is FAR too much for me!!! i take MTX, hydroxchloroquine and folic acid. Welcome! Dawnybee

I think it's ok to mention names as long as you are saying something nice about them!

Doreen xx

Hi Agnes,
another welcome to the forum, I'm Sheila and was diagnosed two years ago. The diagnosis was confirmed after various blood tests. I also moved fairly quickly through various drug regimes, from painkillers, to steroids, then had Methotrexate added then had Sulfasalazine added. Next came Humira and then Enbrel. Which haven't worked for me and I've recently had Rutiximab and am still on the steriods and Methotrexate as it takes up to three months to work.
I was just keen to try anything that might give some control over the swollen joints and pain before any real damage of the joints was caused, so I can understand you going for the trials route.
However it is your decision and we all have differents reasons for doing things. I would definitely declare your RA on any health forms that you have to complete when offered a job, it will probably mean that you will be called in for a medical, but if you got the job on merit of interview, then your employer would be obliged to make adaptations for you if needed.
I know you will make the decision that is right for you. Please let us know how you go on and I hope if you decide the anti TNF route that it works for you.
Love
Sheila