Things aren't what they used to be...

I'm writing this Blogg mainly to highlight how very different things are now to when I was (and a few more of you) diagnosed 17 yrs ago.

You probably don't really need me to tell you but what I'm trying to do is to give you reassurance and support that it won't always be this way.

Being diagnosed with any illness is very frightening, not knowing what the future holds for us and if we believe everything we read about RA then panic will surely set in.

Nobody can tell you how your RA will progress, will it be mild,severe,chronic its always very hard to tell in the beginning. But, what you have to remember is that things are very different now than many years ago when treatments for RA were few and far between. Upon diagnosis all that was mainly done for you would be treatments with Anti-inflammatorys and steroids and constant stays in hospital to try and get the disease under control. That however was very difficult without proper use of DMARDS. I would often spend a few weeks in hospital only to be back to square one a few weeks after that, but that's just how it was then.

I've even heard consultants say that if your diagnosed today then your lucky compared to years ago. I thinks that's a bit harsh as nobody is lucky to be diagnosed with RA no matter how mild. Nobody want this awful disease.

The disease not being controlled would inevitably cause joint destruction, I could feel the disease raging through my body and could do absolutely nothing about it. Joint after joint would be attacked, and then it was injection after injection but it was hopeless the disease was so out of control it was like a fire raging through my body.

What I'm trying to say to you is this, don't believe that you will automatically end up this way there is so much more that can be done for you now, so many new drugs available that most people diagnosed today can lead a pretty normal life once they get started on the right regime of drugs, ok not yet a cure but who knows, one day.

I also understand though that some of you don't even get the treatments they should get because of cost etc, this isn't fair either what they don't seem to understand is that not treating the disease aggressively in the first place can only cost the NHS more in the long term due to joint damage etc.

Consultants have learned to treat the disease aggressively from the very start of diagnosis in order to stop any joint damage and for you have a better quality of life.

So, wherever you are at the moment as regards treatment I wish you all the best. If your not yet on the right drug to suit you or one that doesn't seem to be controlling the disease, don't give up!! You will get there.

Take care for now

mand xx

[cathie]

Hi Mand, its incredible isnt it how things have changed. My mother developed RA in the late 1950s. She was sent off to the Royal Hospital for Rheumatic Diseases in bath for bed rest, to 'take the waters' and get gold injections Like you, she experienced the raging deterioration of her joints, and even though she lived til 2002 she never really had the very new treatments like anti-tnf. She had 'rest plasters' which cant have helped sleep. It must have been very difficult, but she lived to a ripe old age and managed to travel in France, Yugoslavia and Scandinavia and ran several local organisations.

But as you say, things have changed out of all recognition. And if they can improve this much, I assume that can continue? Ever the optimist!

Best to you,

Cathie

[Hidden in reply to cathie]

Thank's cathie, I dread to think what it was like years before my diagnosis too. I also remember having resting plasters/splints to help stop the hands from deforming and losing shape. very difficult to sleep with indeed.

Take care

mand

[Hidden]

Excellent, uplifting and reassuring blog Mandy. I second everything you have said A lovely piece for the newly/recently diagnosed amongst us.

Anyone diagnosed in say the last 5 years or so, maybe a little longer, now have some of the best treatments that have ever been available for RA. Okay sometimes it does take a while to find the drug regime that suits you, that's the nature of the beast, but the chances of long term joint damage are now very limited. In effect this means a good prognosis and better quality of life.

I never went through the acceptance/loss phase, kind of just got on with it ... but that's me! Please be reassured that things will get better. Remember that each of us is different and one persons experiences do not mean yours will be the same. Stay positive, try to take something from the experience that will help you in the future. You have RA, that doesn't change, but how you see yourself can make a big difference to the progress and outcome of the disease. It's good to have hope but accepting the hand you have been dealt and playing those cards will help you move on. Life does change, it becomes different but when it rains remember to look for the rainbows

Lyn x

[Hidden in reply to Hidden]

Thanks Lyn. I agree, having a positive outlook on the future of the disease certainly helps.

It's so easy to get dragged down by the negativity of the disease and the pain that comes with it, but making the most of what we can do instead of focusing on what we can't or wont be able to do certainly helped me deal with RA.

We have to make the most of life whatever hand we are dealt, difficult as it sometimes may be.

We are proof that being strong and positive helps us cope.

Hope you are starting to feel better Lyn.

Take care

mand xx

[17843Medway]

Love the idea of looking for rainbows in the rain. Well done Lyn, always on the ball

[Philip]

Thank you Mandy

[Hidden]

v moving mandy,, you are a gem.. hope people read your blog and take in your experinces..

Cathie.. 50 years later than your mother I am still in 2011 getting gold injections

[Hidden in reply to Hidden]

Thanks Alison, yes i thought about you and Cathie's mum on the gold injections. Somethings just not right is it? and certainly not fair for you.

Mand x

[cathie]

They hurt don't they summer. But they work

Have a good dat

[Hidden]

They hurt like hell!!, they have taken 17 weeks to work.. was feeling about to give up!! the literature paints various pics!! the most truthful was the one saying up to 20 weeks!!., this is the danger of info it can be misleading, or it can be misinterpretated.. the more optomistic version quoted 3 months..!! the difference 3 months(12 weeks!) and twenty weeks is eight weeks!!. now the patient information leaflet was the accurate one it said up to 20 weeks.. that is what people should read !it is in the drugs company interest to have it as accurate as possible.. the inaccurate info was a in printed rhematology leaflet provided and produced by my rheumatology dept!!

[Hidden]

Ah Mandy thank you, and Lyn, x

Julie xx

[Dlak]

Thanks to Mandy and the rest for this blog. Wonderful words and just what I need.

Been suffering nearly six months now but diagnosed pretty quickly and DMARDS started. Showing some results in my small joints I am sure..but my big joints are still troublesome.

-Darshin

[Hidden]

ps my health trust still using resting plaster lol.. they are moulded to fit you hands/ arm . shape and size.. though they are now given the more trendy name of resting splints.. you can only use them at home. or in bed,. they are not the support splints with metal bar, which are the day time wrist support with laces like a bodice and velcro to get good fit to arm and wrist.