Hi everyone

Just need to off-load. Just about to go and see the nurses on a routine appointment. Suffered a relapse in March which got the better of me at the end of April so contacted the nurses help-line, left a message and it took them 5 days to ring me back. Following a conversation where I explained what was going on and asked if I could have a course of steriods they explained that they were unable to fit me in before the beginning of June at which time I had a scheduled appointment anyway. Their only advice was to rest. Anyway I was feeling that rough I contacted my GP (that was a waste of time). Relapse is now over but the service and help (non) I received was rubbish and left me feeling very alone. Has anyone experienced similar and what are we ment to do if we are feeling this bad?


Hi Sue

That’s appalling! I also had a relapse in March but when I contacted my nurse at the hospital she agreed I needed steroids and faxed over the protocol for them to my GP who wrote me the prescription the next day. She said the hospital didn’t feel they needed to see me until my usual appointment in late July/August but I’m okay with that.

I know they don’t routinely give steroids for every relapse and you haven’t said what your symptoms were, but they could at least have given you a bit more advice than ‘just rest’. It would have been more supportive to listen to you properly or at least ring you back the following week to see how you were rather than leaving you for another three months. If they didn’t feel steroids were appropriate there may have been other meds that could have given you some relief from the symptoms.

I think I would have to raise this (politely) at the appointment and ask what you should do in the future when you feel you need help and advice.

Tracey x