So fed up !

Posted , 4 users are following.

I was so pleased to have reduced to 22.5mg last week then on Friday I got yet another infection in my right lung. Been on the antibiotics but today the doc says I`ve got to go back to 30mg. In fact whenever I have an exacerbation of my COPD (which is frequently) I`m going to have to double the dose I`m on. Feel as though I`m fighting a losing battle. Sorry to moan but I`m feeling a bit sorry for myself. Being awake all night with cramp. restless legs and an agonising cough don`t make for a happy bunny. :cry: Shebob

0 likes, 9 replies

9 Replies

  • Posted

    Shebob - keep moaning all you like - that's what we're all on this site for and hopefully just knowing that others care ('cos we do) will be a little bit of a boost for you. I don't know much about COPD but obviously whenever you get any sort of infection whilst suffering from PMR/GCA that stress can trigger the inflammation in the body. Hopefully, once the infection is over you will be able to reduce quite quickly again, and eventually the day will come when PMR/GCA will burn itself out.

    I have recently been in contact with the lady who runs the PMR-GCA Support East Anglia Group, and who recovered from PMR over a year ago she mentioned that she is fit and healthy, cycling again, and after coming off steroids all the weight just fell off. This is a real life story for us all to hang on to during our own personal 'journey', so just you hang on in, moan all you like, and give yourself a special treat of some sort!

    MrsO

  • Posted

    Shebob, I'm joining you in the fed-up club. I was almost down to 4mg daily ............. then an almighty flare kicked in at the weekend. Back to square one!

    .............and if anyone else tells me that I am looking soooo well these days I won't be responsible for my actions..........

    Nefret

  • Posted

    Hi Nefret, Sorry you`re back to square one like me. And isn`t it sickening the way people say \"Well you look fine\" just `cos we`ve got big round faces! I don`t want people tiptoeing around feeling sorry for me but it`s a case of \"if it doesn`t show you haven`t got it\" Ah well, chin up, we`ll get there eventually. Shebob
  • Posted

    I agree moan as much as you like And I also agree with Im fed up with being told how well I look !!!! Struggling to reduce steroids Doctor says pace yourself so I shall become a couch potato for part of the day !! I dont have any knowledge of COPD (except in horses I could recommend a good Vet !!!!) but hopefully as with any infection the increse in steroids will be only temporary I have had lots of little colds this year and if I have a blood test then they are not so good I do think the not sleeping is one of the worse things and the difference I feel after a good nights sleep is immense Best wishes to you for a speedy recovery from this latest setback
  • Posted

    Hi, Fellow Moaners, I'm beginning to think almost the worst of PMR and steroids is the emotional part! One day you begin to think you're getting to grips with balancing dosage, activity etc, you read encouraging stories and begin to look forward to life again, the next, all the aches and pains are back, no energy, made worse by not sleeping etc ( you all know what I mean) and can't look forward to anything because you don't know whether you'll be able to cope or not!! The number of times I've been on the verge of asking my doc for some anti-depressants, only put off by hearing that SSRis take up to 6 weeks to work properly and I want something NOW!

    Now I actually feel better for getting that off my chest so I hope the rest of you find this lovely warm sympathetic site as helpful as I do - it's the people, of course, who make it that way. It's a sunny day here, so I wish you all well, Green granny

  • Posted

    My nurse at the Warfarin clinic told me yesterday that I 'looked a bit peaky' (as I stumbled, limped and crawled into the room). That's the nicest thing anyone's said to me all week!

    Nefret

  • Posted

    Hi Nefret, You gave me the best laugh I`ve had for ages when your reaction to the nurse saying you looked peaky was to think that it was the nicest thing anyone had said to you for weeks! Iwoke up in a dither this morning when I realised my toenails need cutting. How am I going to manage that !! I can`t even see my feet most of the time! Shebob :roll:
  • Posted

    I saw her also on Saturday and she still thought I looked peaky..........going back again on Wednesday................ although I wouldn't quite describe how I feel as 'peaky', anything is better than nothing!

    I don't quite know what to suggest as regards the toenails - I would have had exactly the same problem, but I was already under the care of a chiropodist - I have found that I have to see her more often even though I can now see my feet again (this summer is the first time in several years, there IS light at the end of the tunnel even if when you get there you find it's just a hole in the roof).

    Keep smiling - glad I gave you a laugh!

    Nefret

  • Posted

    Shebob

    Have you got a local NHS Clinic who could get the shears to those toenails?! When I was bedbound/housebond for months with what I now know was PMR a few years ago, I got a horrible corn from my foot rubbing on the mattress trying to move my body somehow/anyhow! Got in touch with Social Services and they arranged for a chiropodist to call several times and once I was more up and about I attended the local NHS Clinic and it was all free treatment. I have now found a wonderful chiropodist at the local Old People's Day Centre and he only charges £10 which is less than a third of normal Chiropody charges in this area. Good luck but long gone are those day when I could touch my toes!!! :lol:

    MrsO

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