Started on leflunomide 10mg and was ok for a couple of months then had 2 knee flare ups along with sore throat, rheumy nurse told me to get checked out for any infections by doctor and was given flu jab, by end of week i was wiped out and full of cold!
Next rheumy appointment they took me off leflunomide till i got over my cold and built myself up and they put me on steroids. Took them for 2 weeks and felt dreadful but when i went for my bloods (afted i'd rang with no reply) there was no-one available as they were at lunch!
Secretary told me to see how i felt in a week!!!
Decided to take myself off them earlier but gradually.
In the meanwhile i had upped my leflunomide to 20mg on their recommendation but had side effects.
I went today for my appointment armed with it all written down, as i'm sick of being fobbed off, and would you believe there was no rheumy nurse just the nurse who takes bloods!
I explained it all to her, my side affects from steroids and larger doses of leflunomide along with my previous history along with phone calls that they dont reply too. She couldnt believe i was newly diagnosed yet left to my own devices with little/no help. I explained how confused, bewildered and fed up i was and ivd been promised a phone call tomorrow.......
I'll let you know if i get it and if i get any joy!
Sorry to rant and moan but i just needed to get it all off my chest.
Xx
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Josie2
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If i dont get the phone call tomorrow after 6 weeks of not seeing anyone (except for blood nurse and sent ofc to phlebotomy) and calls not returned ive made my mind up im going to make an official complaint, ive put it off as i need to go to see the rheumy people but my hubby says enough is enough!
He cant believe how shoddily ive been treat.
Its really getting me down now as ive got loads of side effects and questions and ive just been guessing over whether to take my meds or not.....for the past 6 weeks.
This is terrible I'm so sorry you r being treat like this,I really feel for you,I am also newly diagnosed too and so far I have been treated well,so I can only imagine how you must feel,but I know how alone you must feel.you get really good advice on here so always come on and ask any questions then you won't feel so alone.lots of love Michelle xx
Reading your post I found myself saying, " yep, sounds about right"
We should not have to have this kind of opinion of the treatment
received, or in some cases not!
Sending you lots of good luck wishes Josie
Ann x
Hi - sorry you are feeling so neglected. It's not right I agree - but have you tried seeing your GP yet? I live on an island so don't have a rheumy nurse or team as such but my GPs are brilliant and I see one of them once a month - it's probably a bit annoying for them but it makes me feel less alone with my RA. I have only seen my consultant once since diagnosis a year ago and probably won't see him again until March so if I get side effects or feel the drugs aren't doing enough I tell a GP who emails me rheumy to ask what should be done and then if the consultant thinks I need a new DMARD or a different dose then he asks the GP to adjust or prescribe it. This seems to work quite well but it does mean I've had to be very informed and proactive - so this place has kept me sane really! I just thought i should tell you that your experience isn't right but it isn't unusual either. Tilda x
I agree with tilda, your gp should be able to put pressure on hospital for you, but in England there's PALS ? For patients complaints. I've never found complaining creates a problem and it's worth trying several avenues at once.
Contact pals at your hospital and put in a formal complaint. It might seem ok,but just supposing you had a disease that would kill and they treat you like that and then they would get sued. I know this disease won't kill us,but they don't know the pain we have to go through and treating you like that is not acceptable so go and complain.
I have a good team looking after me at my hospital. I can ring my rheumy nurse anytime i need to and i have to say i see her more than my dr, but when i was siffering badly last year and my dr was off she got me in with a dr whose speciality was fibro and she thought that was what i had. It turned out she was right. It is a shame you haven't got a team like mine,but it goes to show whats out there.
Hi Josie I am really sorry you have been treated this way I go to Rochdale and in the past 12 years they have been great.They answer everything my rheumy nurse is fantastic. I find its them who dont get support. There was only once when I was being refused new drugs by the head Specialist who had never met me, and who my specialist couldnt overrule him. So I COMPLAINED to everyone PALS, my councillor my MP and by looking online I found his email adress and proceeded to tell him how i intended contacting EVERYONE, remember these people have KPIs they have quotas. They are measured on complaints. So do not be polite this is your health and we all know on here that this condition can lead to some very serious health problems because its our immune system. I know you dont feel well, but you have rights, tell everyone about the garbbage service and you will get results. Stay silent and they will just carry on ignoring you.
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