hi everyone, i was diagnosed in September and started mtx and plaqunil in the December , i have been pretty well controlled and have been

hi everyone,

i was diagnosed in September and started mtx and plaqunil in the December , i have been pretty well controlled and have been seeing my rheumy every month for bloods and check up however on the last appointment he said we can now have bloods every 3 months and a hospital telephone appointment at 3 then a check up at 6 months is the the norm ? I feel like my security blanket has been taken away , even though it will be so nice not to have so many appointments xx

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  • Sounds similar to how mine went. So it's good news yours is under control thanks to the meds (like mine). I know what you mean about the 'security blanket' but hopefully you have a contact number for the rheumy nurse if you need help or advice.

  • hi - your blog is really encouraging - I was also diagnosed in September, started mtx and hydroxy added, I hope you don’t mind me asking but i am interested to know how you feel when you are pretty well controlled. this may seem an odd question but i am still trying to find what the new ‘normal’ is for me . I still have some pain and have days of generally feel strangely unwell and find it hard to 'function' so the rheumy suggested adding sulpha – but i keep asking myself do i need it or should i expect to feel rough some of the time anyway? Having said that i have been having steroid injections at each visit so maybe that answers my question?

  • Yup, I think it does! I took the attitude that I was going to aim for 100% normal...and I guess I've got to maybe 98% most days. Still takes a while to get moving in the morning, and MTX day + 1 is a bit of a write-off, but otherwise I'm reasonable as long as I don't totally overdo it. But it didn't happen for me until I accepted taking MTX, Hydroxy and Sulpha. MTX did a bit, hydroxy did a bit more, but I did need the Sulpha to be able to get back to something functional. And my last steroid jab was maybe 9 months ago now so it is working, even if the pill mountain is pretty big. So my advice would be to think hard about taking it, after all you can always stop again! Polly

  • hi swapshop

    you really made me think normal, well its is a new version of normal , i was and am still very into my sports but have had to adapt it now i walk al lot ( i used to run) and do loads of pilates see a naturapath to compliment meds and have acupuncture all to keep my functioning in the new normal.

    i understand what you mean i about how to gage it i am definitely slower and at times stiffer and have general aches in shoulders fingers toes elbows ., i wear innersoles in my shoes when i go out , if not i spend my time in trainers , so it is a new normality. some days like you i am more tired than others and and am lucky enough that i only work one day a week, thats not counting the work i do at home 4 boys stil living here !! IIM still learning to gage the tiredness i will rest and out my feet up and try and reboot, however when my head hits that pillow at night i am zonked, ive also had issues with my eyes feeling gritty but had steroid ointment that seemed to help

    i hope that helps you i still feel tht i am learning with this, however i really try and look after myself as much as i can with good foods im not anal about it but try and put good fuel in and dont eat gluten

    wishing you lots of luck and hope that you continue to feel better and stronger and keep fighting xx

  • I only have hospital appointment every 6 - 8 months now, although can phone the nurse for advice if anything crops up inbetween. It does seem a bit insecure to start with, but now it actually helps me feel "normal" that I'm not spending half my life at doctor's or hospital. But took me years to get to this stage, so brilliant that you've got there is 6 months....keep it up! Polly

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