Hitting a brick wall

Sorry i've not been on here for a while - been hiding under ny duvet after my latest rheumy appointment-probably one of the worst since i've been diagnosed 6 yrs ago

I haven't felt well since the start of August nothing specific just a feeling of having mild flu,achey more tired and more swollen joints than usual.I didn't contact rhuemy nurse as i had an appt last week

I knew i was in trouble when the consultant was there normally he just pops in to OK everything the nurse has done.

Well my DAS score is 6.3 -not been that high for years,ESR is over 100 normally between 20-30 and my iron level has dropped below 8 .It seems that the RA is winning the battle.

I can't have any more MTX as i'm already on 25mg injections so they are going to assess me for anti TNF,had a rather large steroid injection and i'm back on the dreaded steroid tablets after spending so long getting down to 5 mg.They're doing more tests to find out why the iron's so low so in the meantime i'm back on the lovely iron tablets -YUCK.I'm also going back in Novemeber to have steroid injections in my knees (again) and elbows.

I'm normally so positive about things but this has knocked me off my feet .I had a weeks holiday of work but due back Monday and don't know how i'm going to cope- work are good but i'm only allowed so much time of with RA (8 days) before attendance issues arise.Husband says give up work we can manage but i need to work for me i'm not letting this b***** disease beat me but i really feel i've hit a brick wall and i've not felt this before

Sorry for the moan but it helps to write it down

Hope you are all OK

Julie

8 Replies

oldestnewest
  • Hi Julieporter, so sorry to hear things have been so rought for you in the last couple of months. The anti tnf should help but it does take several weeks to take effect. What about pain killers? Have you been prescribed any at all? They do help. The last time my ESR was that high - in fact 144 = was when I was first diagnosed and the disease was out of control. The steroid injections will help as will the tablets. It needs to be brought under control again. I had to spend 4 days in hospital having steroids dripped in each day for 4 hours at a time.

    Your hubby sounds lovely and supportive. Have you considered going down to part time? I went from full time to 3 days a week and it made a colossal difference. Also get as much rest as you can, don't over do it at all. You could try hot and cold packs to see which helps the most? (My shoulder prefers hot packs, but the rest of me prefers cold - how weird is that?) lol.

    Do hope things will improve for you soon. Let us know how you are from time to time.Love LavendarLady x

  • So sorry to hear your news.. hopefully the ant tnf treatment will turn things around for you?.

    If you your sick leave is certified the firm is obliged to honour it!,.

    The iron tablets are unfortunately needed so dont say yuck.. the most common ones ferrous sulphate look like large shiny smarties lol.., they may cause slght constipation so increase fluid and fibre to compensate.

    Sending my very best wishes

    Alison x

  • And here was I worrying that my CRP and ESR have gone back up to over ten and what the hell was my MTX doing going soft on the enemy. Of course before MTX it was a different story. Well you have the attitude. In your own words you're not letting the b***** disease beat you. So you've hit a brick wall. Hit it harder and it will fall down. Good luck with the biologics.

  • Dear Julie

    I think its good for us to feel sorry for ourselves now and again because trying to remain positive and a fighter all the time is hard work and exhausting... and you have a right to feel upset for the way life is treating you. Take care. I recently after struggling on working and on the advice of my doctor gave up work. It took me a long time 'to give in', but for the moment it is not an option and means that the best of me is kept for myself, hubby and daughter. In a way I wished i'd given in months before.

    U take care, accept tissues and sympathy.

    Missy/ Anne

  • Rest julie,i'm a good one to talk i've been running around like a headless chicken since thursday due to hubby being in hospital. He is on the mend now. I quite agree with you about letting the B""""y disease beat you,thats been how i have felt about ra, I've not as much pain as you have, but i fed up with it as i'm not my usual self. As has been said before think about cutting your hours. I haven't worked since i got made redundant 2yrs ago and i have gone down ever since. I know what you mean about working for you not so much about the money, its someone saying job well done,that don't halve boost your confidence.

    Sit back for the weekend and rest and think what you want to do and go with what your happiest with. Try cutting one day of your working week and see how that goes. If they won't work with you see a union rep as i'm sure thats discrimination.

    Relax,have a drink and let tomorrow worry about itself.

    Love Sylvia. xx

  • Thanks for the support everyone -i've been give fentanyl patches for the pain but boy do they space me out!! i've applied to reduce my hours to 24 p/w -i'm going to have Wednesday off so hopefully that will improve things.I don't really want to stop work as i'm hopeful the anti TNF's will improve things -does anyone know how long it takes to be assessed?

    And Bencorde -your right i will try and hit the wall a little bit harder!!!

    Thanks again your comments they really do help

    Julie xxx

  • Hi Julie,

    Just seeing this post now, maybe it's for the best if you get approved for anti tnf, at least you might get off steroids. I am going thru a bad patch also, and am seeing more of my bedroom and pills than I,d like. Try to stay positive and know that this will pass and the Ra will improve again you just need eternal patience with this disease.

    Kind regards, Gina.

  • Bad flares suck, hope you get on top of things very soon and the TNF's work for you.

    I gave up work 2 yr ago after struggling for almost 20 yr, it got to the point my employers occ health dept said "enough was enough" and advised me to retire. I now feel it's the best thing I could have done, my meds are sorted, I'm doing exercise, can rest as and when needed and do volunteer work to keep my mind busy. Plus financially I'm just as well of with disability benefits.

    Good luck hope your feeling better soon. xx

You may also like...