Ah twithytoes there's nothing worse no sleep and I bet it's aging with gallstones my gran used to be in such agony with hers hope you managed to get some rest and feel a bit better today.
Don't know if any of you have methertrexate injection delivered only I was told should be able to have it delivered to chemist as I'm not doing it myself yet nurse still doing it but am hoping to go back work and won't be able to have the injection delivered to home as I will be working full time but the chemist where I have my prescription done from said they can't accept it like that I would need it doing on repeat prescription.
I went see consultant last week and nurse had said to stop injection last week as the rash on my face seemed to get worse after methertrexate and my.joints last few weeks have felt worse especially wrist and knee feeling like I could lie down just about anywhere but can't sleep but gp wasn't sure if I had perioral dermititis so said wait see what consultant said. I am really confused because consultant thinks it's the steroids but said he could try me on azathioprine which I had never heard of. I was given a leaflet on it and said to have a look on line but consultant doesn't think it's as good as methertrexate he is also on about reducing steroid at moment have come down from 45mg a day and I'm now on 10 he wants me to reduce to 5mg every other day I should have gone for counselling on other drug tomorrow but since being off the methertrexate my tummy still the same and rash and fatigue are no different so me and boyfriend had a chat and I went to see gp and I decided to try the methertrexate again but reducing the steroid. It's so hard because I thought that because my bloods are so good said esr and crp are right down I thought I wouldn't still have the fatigue and I thought things had improved because of all the steroids because they had previously injected joints before coming out of hospital and gave me a steroid drip and I felt great so when I started to feel worse I understand they can't keep you on lots of steroids, I thought the methertrexate was perhaps not working and I thought the rash,bad tum and joints were down to that. Consultant said that he thinks the methertrexate as been working and the rash and tum are the steroids and the fatigue is something no one knows much about and they would look at that after. It's so confusing because I can appreciate that the stills disease is rare and it's hard because I suppose there aren't many drugs to offer and I know like we said other day have to kiss a few frogs before we find our prince. I rang to say I wanted to stay on the methertrexate but of course I never thought they couldn't give me injection without speaking to consultant and he's off now till end of week I just hope it will be ok the nurse said she will call.me once spoke to him she said it should be ok am just a bit worried, and hope I can have injection next week, but then I'm worried because I really feel like joints are getting worse and last couple of blood tests have shown only a small increase in crp but how do I explain this when bloods are so much better than when I went into hospital , it's so hard because I'm knew to all this and have so many questions which I do write down for when I see consultant but I just want to get my life back and appreciate I'm not going be running a marathon but I have a new job awaiting me and I kniw I've come along way since last November but I suppose I thought I would be back at work by now. I think I've been feeling a bit down as well because we normally go on holiday to Malaysia and meet up with friends and we would have been celebrating dad's birthday there next week 85 and I feel guilty although everyone says don't worry we just want you better I do feel guilty because i know how much they look forward to it and it's hard not to beat yourself up over it but hey ho will have to decorate my lil palm tree in the garden and make it feel like we are on our jollys .I also got my first appointment ar job centre I rang them as it said they help you get a job or train but I said I already have a job but I haven't been able to start it yet he then said do we know you've got a job I said yes because you have stopped my esa how many times. He said you will still have to go for appointment or they will stop your esa I am now worried that I am going to have problems again with esa really don't need the stress I've never been on benefits have worked full time all my life, but that doesn't seem to count for anything they speak to you like your tge lowest of low really wish I didn't have to claim but hopefully I will get someone who understands.