hi everyone on here; i dont get wot all this means, i can't relate that i have something scarey going on

[jaqi1]

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Hi there,

it's way past my bed time but I'm wondering what you mean ... do you mean that having RA just doesn't feel real?

If so, I'm a bit like that. I feel fine most of the time and then something happens that makes me realise just how serious it is. And some things have just changed, some friendships for example - I'm sure friends I've known for years and years suddenly see me differently.

Do you also mean that you are in the dark about what RA does to your body? If so you could ask to talk it over with a Rheumy nurse or look at websites or ask more specific questions here perhaps. Mind you, I have looked in to all that & it still feels unreal, I think that's just how it is at first.

Hope you are okay, all the best,

Christina x

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Hi there,

I'm with Christina here in that I'm not quite sure how to answer the question. Looking back at your other posts though makes me wonder whether you have been overwhelmed by some of our stories that, perhaps, you can't relate to as it doesn't affect you in the same way.

I think it is really important to know that RA can be very, very different for each and every one of us. For some people it may be aches and pains in hands and feet which are manageable and not really interfere too much with day to day living. For others (particularly those of us diagnosed before the new biological drugs) it has had a more severe impact on our lives and has led to permanent damage to joints and subsequent disability. It does not mean that it is inevitable that you will end up in the same position.

RA is not something that you can see, which is why so many have trouble understanding it. Basically, if you imagine that we have an inner traffic light system, when it is green it tells our bodies to create defensive cells when we get an infection or virus. This helps us get over colds, flu, chest infections etc. Once the infection is completely dealt with the traffic lights return to red again and the defensive cells go back on standby. With RA the defensive cells no longer recognise the red light for stop so keep building up defences, generally around the joints, until they interfere with the normal running of our body.

When this is recognised early enough then medicines can be prescribed that deal with different aspects. Some will focus on reducing pain so that you can remain active. Others will focus on helping the defensive cells to recognise that there is a red light and to stop overworking. These are disease modifying drugs like methotrexate. If you are treated early and effectively then the defensive cells will not have been out of control for long enough to cause any lasting damage to your joints.

If the disease modifying drugs don't work then you may be prescribed biological drugs which act in a slightly different way - for example by switching off the green traffic light. These drugs can, but not always, mean that if we get a virus or infection and need our defensive cells to work on it they don't do their job so well because our meds are holding them back. This is why we are offered flu jabs etc while on Mxt.

It is important to know that activity of our defensive cells (immune system) is normal and not the same as something like cancer. In the case of RA these normal cells become over stimulated and need medical intervention to slow then down.

I do hope I haven't given you a lecture about something you already know about. It can all be very confusing at first because you have no way to predict an outcome. I can only suggest that you speak to you GP and to your rheumy team as much as possible, ask them what to look out for, what your blood tests mean etc so that you can feel more in control of what is happening around you.

All the best

Judyxx

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Excellent analogy, Judy. That really helps define what is going on in a good way for understanding it all.

I can imagine what Jaqi was referring to..Like..."are you people serious?" " Is all that stuff going to happen to me?" It is a scary time for newly diagnosed to read what is happening to many of us.

But you described that part too. Most of what we write about is due to the fact we didn't have the DMARDs and biologicals that are available now. Hopefully, this generation will not develope the damage and disabilities that we older ones are living with. The key word to me is LIVING! We may have some issues, but by tolerating and doing what is necessary, we do get on with Living! Tilda and Creaky's blogs the other day need to be published in an RA Journal somewhere!! L.xxx