Hi everyone

It's a beautiful morning here and I am so fed up and feel like a good moan. I have been on Enbrel and Leflunomide for a year now and also take amitiptyline and tramadol as pain killers. I had a massive flare up about 2 months ago and was given a 6 week course of steroids. Wow, they are fantastic and really did the trick. I saw my RA nurse who prescribed the steroids, and then saw her again a month into the steroid course. She said that when I came back for bloods in a months time she was going to do a full review of my meds because it was clear that the Enbrel was not working. Fantastic I thought. I went back to Rheumatology on Thursday and saw the RA clinical lead who said after taking my bloods, that he was not in a position to change my meds so I would have to see the consultant to do that. Fair enough. He said he would go to the desk and have a word with the receptionist who can do wonders apparently in fitting people in. When I left, I popped my head in to see him again and he said not to worry I would get a letter in the post. I am just desparate to get my meds changed. My feet are terrible and it feels like I am walking on marbles. My hands are stiff and swollen. I am in the process of getting ill health retirement from work and the RA consultant received a letter for him to write a report for me and he has had the letter over 2 months and he still has not replied, even though I have been in and phoned to remind his secretary of its importance. I feel as if I am in a limbo state with nothing being clear for me anymore. I just want my ill health retirement to go through and my meds changing. Is that too much to ask??

Louise

hi louise, im sorry to here about all the bother you are having sometime i think no one cares, do they not know the pain we are in, i know what you meen about your feet mine were like walking with broken glass in my shoes i had insoils made and it has helped a bit but o the pain was so bad i was crying with it when i have flare up in my hands i can deal with it and just wait till it calms down but we need our feet from the minute we are awake till we lie back down, i hope you feel better soon its good to know we all know what you going through cause we are going through it with you take care
sylvia xxxx

Hi Louise.
Hows things today? Totally understand the limbo state im there myself! Been off work for 2 months and still no better, started infliximab in March but it hasnt made any difference at all! Have to wait until August to see consultant about trying something different...Why does everything take so long?! Work are pushing me to retire on ill health but Im reluctant as I hope that I'll be able to return to my job...At the moment feel useless and like you just want to get sorted..Rant over.
Hope you get some answers soon keep on to the hospital! Take care
Ceri x

Hi

Have had an email from the consultants secretary with an appointment for 18th July.......not sure I can stand this pain until then. Have asked for an earlier one but wont hold my breath!!

Louise