Am I naive in thinking that if R. A. is being well controlled, there should be no need for oral steroids? I realise that injected steroids are frequently used but am quite worried about tablets and infusions. At my last dexa scan I was told that I have some osteoparosis [prob. spelt that wrong] in my spine so am concerned. I seem to have been on steroid tablets most of the time over the last two years, when trying new treatments and although the new drug may appear to be working at first as soon as I stop taking the steroids it all falls apart. The request to come off the steroids is always my own, last time, after being told that Enbrel inj. were working for me, and I was feeling much better, but had been since being on the steroids, the team seemed reluctant for me to come off them, allowing a small reduction for three months and when I asked again at my next app. they were surprised that I was still on them! I have always thought that for any drug to be working properly, steroids would just be an injection now and again. Am I wrong? Would appreciate any comments. I always feel like a pain in the bum when I go for my app. a nuisance for failing yet again! Zena.XX

Hi ya

I'd get onto the gp on this one zena
The steroids can be reduced then off but it takes ages
You mustnt stop them suddenly


Ive got secondary addisons and diabetes because of the steroids
But without them I just can't move
And now have to take them because of addisons too!

Are you on calcium tablets?

Jenni xx

Zena

It takes a long time to come off steroids I am afraid. I was on a dose of 25mg when I started on Enbrel and the consultant would only let me come off them 5mg every six months. This timing may have changed as this was 10 years ago.

My advice would be to note down all the questions you want to ask your consultant at your next appointment as you cannot aways remember them all. Take a pen with you as well so that either you or your daughter can make notes of the answers.

I hope that they can find a combination of drugs that can bring your RA under control.

Best wishes
Lisa

Thankyou Lisa and Lyn for your comments. It sems to be quite a thin line we have to tread with these steroids, we need them but we don't want them. It is a shame that something which does us so much good and keeps us mobile, can also do this much harm. I for one did not realise just how much harm they can do long term until listening to everyone on here. Compared to others I can see that the dose of steroids that I have been on is fairly low but I will ask more about them at my next app. I had two infusions of rtx in November and think it is starting to help most of my joints to a certain degree but not my knees unfortunatly as they cause me most problems. Aspirating and injections into the joint help for a while but fluid soon builds up again. Well at least I know there are many others in the same boat and many a lot worse. I feel very lucky not to have developed R.A. until I was 56 in spite of all my grumbles. Thanks Zena x.

Hi Moiraod, you have made me feel a bit less worried about taking this low dose of steroids. I have been on a similar dose to you fluctuating between 5 and 10 mg aday. I've also had a few infusions when needed. I will certainly discuss it properly at my clnic .Thankyou Zena.