Hi everyone,

Coming on here for a moan again. I am in terrible pain, particularly in my feet, ankles, hips and lower back. I am on Enbrel and leflunomide, as well as meloxicam, amitryptiline and tramadol. I have a new RA nurse who is very good and who, on taking my bloods on Wednesday, suggested I had a steroid infusion. I spoke to him yesterday and he said that my inflamation levels were not up but he was going to ask my consultant if perhaps I could stop the Enbrel and try another anti-TNF, and get a steroid infusion. I have a already had a steroid injection in November 10, and had oral steroids in the past. Does anyone have experience of a steroid infusion? How do they do it, how long does it last? What are the side effects? I have been off work since November 10 and am in the throws of trying to get a phased reintroduction into work having seen occupational health etc. I am really not sure that I can cope with work though.

Any advice would be gratefully received.

Louise

I've had 4 in the last year. They are great. My experience was the same as Becky. One time I was asked, while seeing the nurse, if I wanted it right then and there as they had space so I said yes. I've had the canula's in the back of my hand which has been fine. Some people choose where they take the blood test from - but then you can't move about so much. I just sit there reclining and playing with my ipod - mindless games, if there is no one to talk to - remember to charge it up! There is a lot of form filling in, so the admin can take about 30 mins, then the infusion took about 2 hours. Word of advice: go to the loo just before they connect you up - as it slows it down if you need it in the middle!! (they have to disconnect you and then reconnect you!)

I got a metallic taste in my mouth for about 2 weeks (now I get it all the time as I'm permanently on steriods!). I didn't sleep very well for the first 3 nights, but that is quite comment as steriods are known to perk you up!! I also had loads of energy and felt on top of the world for a couple of weeks. Managed to get loads done. I also got a slightly red flushed looking face for the first 2/3 days afterwards -- which is apparently also common - friend called it the steriod flush!!! It's fine - it just looks like you've just came back from a holiday with a suntan - which was quite nice!

They are certainly nothing to be worried about - the benefits are amazing - and I would never turn one down! I was out of pain for the first time as the infusion works on all the joints, rather than a single injection which works on just one.

If you get a chance to chat to people while it's running through - it is a great way to find out what's happened to other people and what has worked for them. Most people are happy chatting.

Hope that helps
Anne

Hi Louise

I am on Enbrel and Leflunomide (previously Enbrel and MTX) and feeling quite poorly at the moment. I'm seeing the nurse on Tuesday. She told me yesterday that Enbrel and Leflunomide are not a particularly good combination and for this reason they are not often used together. It was a last ditch attempt for me, already failed on Leflunomide on its own, because one way or another I've tried all the DMARDS and one previous anti-tnf!

I know your nurse and consultant will have all your details but just wanted to say beware of coming off the Enbrel too readily, the poor result could actually be the Leflunomide! You may find you're not actually any better on an alternative anti-tnf and could be reducing future options.

I'm sure you must be keen to return to work but if you have reached the stage of considering a second anti-tnf and steroid infusions it suggests that your RA is far from under control and a return may not be in the best interests of your health and could actually be detrimental.

You have all the info here on steroid infusions (methyl prednisolone), they can give you a real boost. I have had many over the years but each time I have been admitted for a few days. You have to remember that this acts temporarily on the symptoms of the disease (not the disease progression) so although you will feel tons better bear in mind the underlying problems are still there and will return without ongoing treatment to act on the RA. A minimum 48hours bed rest is usually advised.

Good luck Louise,
Lyn x