hi guys,been diagnosed now 6/8yrs but does any one know how to work out if meds are not working any more,i am on mtx 25mg inj and I feel so rough now and the pain is driving me nuts,i have been on this for about 4+ years and I haven't had a follow up from rummy nurses for years,i do bloods every 6 weeks but get no feed back,if I ask about results at gp's I get the all ok if any problems we will phone,i was never told about das score or a lot of things which you all talk of on here so feel a bit in the dark,i do see the consultant every year if its not cancelled but tend to rely on my gp more than ever now,i have tried to contact nurses but they don't phone back then I forget so it goes on,i have booked a seat at a chat night by nras at my hospital this month but it wont be the right time or place to catch any one, I am going to have another go at getting onto a nurse on Monday even if just to talk to her about how I feel,i am normally a happy go lucky person but these days I just feel a wreck,sorry to moan not like me really,dorothy

I agree with Gogs, you need to enlist your GP's help to get you back on the rheumy nurses and specialists' radar.

You may be having a flare or the MTX may have become ineffective - only the experts can say.

thanks guys, I will be phoning on Monday as I cant let it go on it will drive me insane, the hospital i have to go to doesn't have a very good reputation for follow ups any way so fingers crossed, i have talked with an older lady as you do in shops and she has no trouble to get a nurse but she is only 5/6 months started on her journey i laughed and told her give it time and she wont see any one at all, my gp is great he really helps but only so much he can do, the thought of starting new meds all over again gets to me a bit, with mtx the side effects are awful so any new meds would be a breeze, will find out whats what i hope sooner than later and go from there, just hope i have not been taking mtx for nothing over the last year or so if it has stopped working all those days of feeling off the stuff scares me as it is, first time for me but i had a rotten day today the old knees went a-wall so it was a couch job with a cushion under them most of today, maybe i am just noticing things as i don't really take much notice of pain i tend to try and work through it but this hasn't felt my usual discomfort for months now,every time gp checks me out i have no swelling no red areas and no high counts of whatever but i feel the ache and can hardly walk etc but bloods are good so why,,any way,thanks again been a help,dorothy


if perhaps i have to change meds would i stop my mix to let the system clear for a week or so or do they just start new one straight away, any ideas just wondering out loud.

cheers paul,I have asked to be reffered to an other hospital in the past but didn't get anywhere maybe because its a different county the reason who knows,its also a distance from me so I would need someone with me,i will give it one more try and then I will really kick up my heels,will post how it goes,dorothy

Hi Dorothy , sorry to hear of your troubles , your care is unacceptable isn't it ? I have had appointments cancelled too and have got a brilliant nurse but can never get through to her , I have seen how snowed under she is when I have been there and she admits she hasn't got chance to listen to messages left , not really her fault. but I have despaired too when I have been desperate for advice and it feels like no one is there for you. make a nuisance of yourself till someone helps. as for the MTX , it didn't work for me and I was put straight onto leflunomide , no need for a gap. hope you get sorted soon x

thanks for the replies people I really could have a damn good cry but I wont,,8.30am and I phoned the rummy nurse and guess what....the nurse I had 2 years ago had left 2 years ago, so now waiting for this nurse to get back to me later this afternoon, i wont hold my breath but if no call by 3pm I will get back onto them today and every day till I get someone I am now getting so angry with it all, the receptionist was shocked that it had been 2 years since I had a visit or talk with them and cant understand how I have slipped through the net, "yeah" i can, ,reading on here I need to know a lot more and be seen not just fobbed off as per,ok I am off now to rest up for my rant later at the nurse,will post outcome, dorothy

well as expected I had to phone the nurse again at 3.30pm, she was very nice and did mention I had not been for a time( 2years) BUT I had seen the consultant in October 2013 and I felt Fairly good etc.....ok red rag to bull so I had a few choice words and I am now waiting for an appointment to come in the POST couldn't give me one there and then as she is so backed up with patients appointments "hello",i will give it till Wednesday next week due to easter holidays then I am back onto them if nothing arrives, told her I was not letting this go until I got satisfaction from someone even if I have to go into the clinic to get some attention, a change of heart and
she suggested steroids for now to which I mentioned how can she prescribe without seeing me, i thought it reasonable to ask,i have refused any more meds till I have her in front of me, she did say I could go to my GP and so it went on, however now back to the waiting game,dorothy