So saw the consultant last week and because I can't tolerate any of the dmards but don't qualify for biologics I am now being left to my own devices with no treatment. I find this hard when for seven months they've been drilling in to me how lucky I was to be diagnosed early, that I have a serious disease and the aim is to prevent it getting worse by giving me medication. Suddenly it is, sorry we have no optioned left because you don't qualify for the more expensive drugs so forget everything we've told you.
Obviously this has left me feeling very low and abandoned. Then today I called my RA helpline at the hopsital because they were meant to arrange collection of all thr injections and sharps bin still at my house but they hadn't.
The nurse answered the phone and as soon as I gave my name her tone changed. What do you want now...what is it this time.
Whilst the consultant has alwazy been very nice two of the RA nurses have left me in no doubt that they find me tiresome and that to use their term I am their problem patient.
The reason for this.....I have reacted badly to each of the medications they prescribed. Each time this happens I have to call the helpline not because I want to but because that is what I've been told to do. They have tried me on the same drugs several times with the same result which means I have to call them each time. Both of these nurses have made it clear to me they think I should put up with the side effects and I am a nuisance who just won't go away and "suck it up" as far as the side effects are concerned. Yet both my GP and the consultant think the side effects were way too severe for me to continue.
But having been dealt that blow last week that they will now abandon me to my fate the attitude of the nurse today just pushed me over the edge. Needless to say when I told her I wouldn't be receiving any treatment now she perked up a lot and was very cheery as she put the phone down.
I tried calling the NRAS helpline but it's shut....
My boss has now accused me of making things up as the hospital clearly don't think I'm ill enough to warrant any treatment (which is not really the case) and I just wanted time off.
I can't get my head round the fact that 7 months of sheer hell later I am back where I started before I was diagnosed.
Sorry rant over. Apparently you only count if you are a good little patient who responds well to your medication