Treatment - Waiting on the next step!

Haven't been on here for a while, so hello - I'm back.

I tend to 'ignore' this website when I'm feeling well - probably part of the denial process I'm still going through!

Anyway, body rejected MTX so not taking anything at the moment. My body has now become an invasion site for the piranha fish that are eating away at every joint in my body (at least, that's how it feels).

Doc has signed me off work for 2 weeks and for the first time since I've been diagnosed, I really feel like I need the break.

On a course of steroids to try and calm down all these flare ups, so fingers crossed.

Waiting on my Rheumy getting in touch to see where we go with the treatment next.

Watch this space!

Hope you all have a nice day x

7 Replies

oldestnewest
  • Morning mand,i have just had a steroid injection yesterday as i am in a rather nasty flare,so i know what your going through. Sadly i can no longer work due to my health.The break will do you good. Sending hugs. sylvi.xxx

  • Thanks for that Sylvi. Work is my biggest worry at the moment. I'm in quite a responsible job and have a team who work for me and are VERY needy!! I sometimes want to scream at them and tell them to go away (that's the polite version).

    I suppose I'll just have to take each day as it comes.

    Thanks again

    Mandy x

  • Hi Mandy

    Its a horrid feeling when u r too poorly to go to work but you know things will go bang when u r not there. U could always phone and delegate tasks or email your deputy (thats what i did!!!!) yes control freak! lol, but it gave me peace of mind that the work was being done whislt i was off.

    I hope your steroids kick in soon and they get u onto some good Dmards.

    love Axx

  • Hy Mandy,

    I'm self employed so in a different position entirely and my kids are all teens so I don't have to look after them round the clock anymore - and I think this makes me pretty fortunate for an RAer. But the bad bit is that the MTX knocks me so far back each week in terms of sickness and exhaustion that I am not getting any work done as an artist and have some really big deadlines looming. Still at least I can juggle the times when I work with my body's new rather ill feeling rhythms I guess and I earn very little from it anyway. And your description of the piranah fish eating joints makes me shiver and reminds me how far away from pain the MTX and Hydroxy mix have taken me at least. You need new DMARDs soon. I see my rheumy later today for the first time in over 8 months since diagnosis and am hoping I don't get tongue tied as feeling so wiped out again today.

    But I think the art of having an important job and a disease like RA is to become good at delegating. If I were you I'd do that like mad - as with kids - they won't learn the skills unless you put them in at the deep end sometimes? Force them towards some independence (but not too much perhaps!)?

    Tilda xxx

  • Thanks folks for the work advice. I'm very good at delegating - it's something I've had to do more and more over the past year or so.

    I know the wheels of industry won't stop turning just because I'm not there, but I still can't help but worry.

    I'm going to make the most of this 'me time' over the next 2 weeks and delegate all the household chores to my long suffering better half.

    :-)

    Keep smiling folks

  • Hi Mandy,

    Do also include in the "me time" regular phone calls to chase a rheumy appt, as if you wait for him/her to get in touch you could be hanging around for a while. Sometimes you can get cancellations at fairly short notice. I remember that you're a bit ambivalent about the hard drugs, but although steroids are great at calming things down, it would be good to find a drug that suits you longer term as the piranhas will still be munching away underneath. I regret not being more proactive at the beginning, as maybe if I had been I wouldn't have the permanent damage to my feet that I have now. But I have nothing but admiration for you continuing to get through a working day, so enjoy the rest. Pollyx

  • Hi Polly

    Can I ask how you found out about the damage to your feet? I'm guessing after having x-rays or scans? My feet are permanently sore and despite 2 cortisone injections don't ever seem to improve although the swelling did go down. I hoping the mtx will help in time but I've only taken one dose so far and know it will take time. I hope you're going on ok x

You may also like...