Hi Paul and another welcome. I can't add anything to what's already been said, other than there's as you say always hope, hope that maybe the next drug will work or the one after.
This forum is a great place for help and advice.
My very best wishes and hope they get your treatment sorted quickly so that hopefully the RA becomes under control.
Sheila

Hello everyone

I am here again to say how staggered I am by the number of good people out there who have taken the trouble to reply to my post. It is really reassuring to know that you are out there to give support, and hopefully I will be able to reciprocate once I have more experience.

I must say that I almost feel like a fraud when I look at the ordeal some of you are going through. I get aches and pains, sometimes severe, but there are many days when I feel quite normal, even more so since I went on steroids. This leads me to hang on to what is perhaps a false hope that maybe they might be wrong. Perhaps many of you have been through the same thing?

I will know more after my consultation on Wednesday. In the meantime, be assured that you will all be in my thoughts and prayers as I hope I will be in yours.

Take care and God bless

Paul.

Hi Paul, Im Liz. Sorry you have RA but welcome to the forum, glad you are finding it helpful and supportive.
I was diagnosed 1998 after a year of terrible pain and fatigue and just not knowing what was wrong. I was 27 when symptoms first appeared. I got my sister's nursing books out, managed to work out what it possibly was myself and was then told off by GP for imagining worse case scenario's! A year later found out my assumptions were not wrong and can remember feeling completely devastated. My Gp is really supportive now and helps me stay on top of this horrible condition.

I can really relate to what you wrote above, Paul.
Like others I have hoped and hoped for remission and dreamed of not needing the tablets any more - thinking maybe they have got it wrong, maybe Im getting better.....
It was only a few months ago after potential contact with swine flu when I had to come off sulphasalazine for a week - that was when I really realised how much the meds really do help. I was SO glad to start taking them again after the week was over. Blood tests have since confirmed I have had swine flu although still not quite sure exactly when - as RA quite often feels flu-like ~ its hard to tell....

I think getting used to diagnosis is a timely process - you don't want to believe it but slowly realise things need to change in order to get through day to day life - this diagnosis is life changing but by learning to adapt well, sometimes life can seem pretty normal some days.
I have found that pacing activities and like others say learning to say no sometimes, can be helpful in maintaining some control over this disease. When I was diagnosed the consultant told me a fighting spirit is absolutely essential to managing the condition but also that it is vital to learn and listen when your body is telling you it has to rest - this was something I really struggled with at first and still do sometimes if I'm honest...

Hope your consultation goes well on wednesday. I always make a list of things to discuss and any questions as I tend to forget these otherwise, until too late....
Take care ~ Liz :)

Hi

I too - can relate to hoping that 'they've got it wrong'. My journey has been over 5 years before diagnosis in 2008 and then unfortunately needing to accept anti-tnf therapy to maintain some degree of what used to be normal.
In fact - I think that I 'might not need all the drugs'?
but in reality - I recognise that I have made so many adaptations that I seem normal - until I stay somewhere out of my daily environment!
I forget that I have changed our menus to reduce chopping, peeling, etc.
I have put all shampoos, soaps etc into pump dispensers.
I wear clothes with out buttons, no side fastenings, shoes with out buckles or laces, no heels!!!!!!!!!!!!
I have heightened all the seats I sit in at home.
I have an afternoon rest/nap, when I finish work.
I am rarely up past 10pm - previously never in bed till midnight!
The list is endless and as I say - until I am out of my normal daily situation - I feel I am relatively unaffected.
The drugs keep me able to continue my life without sacrificing too many normal things - but I worry about the future because I AM taking a very strong cocktail of things - but it's a balancing act!!!!!!!!!!
I think the only way to approach RA is to try to be positive and find a way round thing (as much as possible)
I'm sure we all try to do that as much as we are able?????????
Take a list of questions with you for your consultation and keep a record of the answers - that will help you to feel you have a bit of control and an ability to make informed decisions about your situation. Hope it goes well and let us know!

Beth

Hello Amanda

Thank you for getting in touch, and it's good to hear that there is a fellow Oxonian here! Having only moved over here in the past two years, I am still under the care of Doctor Coombes at the Gloucester Royal. This is who I see on Wednesday, and have found the department to be very caring.

However, my GP would prefer that I moved to the Nuffiled at Oxford, and with this in mind I have an appointment in early September under the care of a Doctor Paul Bowness. This is a complication that I could do without, but hey! what's one more complication!!!

Per ardua ad astra

Paul.

Hi Paul

I was dx with lung fibrosis about six years ago, my lungs at that time showed scaring at the bottom. I had various tests and they could not come to any conclusion about the cause, although now I think it maybe connected with the RA, it hasn t got any worse but was put on leflunomide, hydroxychloroquinne and diclofenac together with low dose of steroid. This combination hasn t done the job for me, so now being put forward for ant-tnf.

Hope all goes well for you, keep us posted.

Julia

Hi Paul

I'm rather late wishing you a warm welcome to the forum, sorry! Been on hols and trying to get back to normal is proving difficult ... oh to return to sunny Cyprus!

I'm Lyn, married to Mike, we have four children, Abby 22, Ian and Jake 17 and Louis 15, all in various stages of education. We live in Thornton Cleveleys (dare I say near Blackpool!) in Lancashire. I was diagnosed with sero-negative RA 22 years ago and have since then run the gamut of medication and several surgical procedures. I'm currently on Enbrel, Prednisolone, Naproxen and a bucket load of assorted painkillers! Currently recovering (although not well!) from an unsuccessful knee op.

There's little I can add to what others have already said except to say that you will find the forum is full of useful information and a wealth of personal experiences. Please do not hesitate to ask if you have questions ... doubtless someone will have travelled the same or similar road before.

Chest X-Rays are done as a matter of course before starting patients on Methotrexate and sometimes Lung Function Tests are completed too. It certainly doesn't mean you have any lung damage and as you are only recently diagnosed it would be very unfortunate (and unlikely) for this to be the case! I wouldn't worry about this as the CT scan will be conclusive. Your doctors are acting cautiously as Methotrexate is a very toxic drug and not used lightly. You may find that the twin therapy of prednisolone and sulphasalazine is sufficient to bring about control of the RA symptoms. If not there are lots more drugs to try so don't despair Paul, ... all will be well! Stay positive, things do get better (well except for my poorly knee!! )

Lyn x