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I'm feeling a little lost

Posted , 6 users are following.

adette01750
adette01750

Hi all,

I hope you are all doing ok / as well as can be!!!

some of you may remember me but just to give some history, I was started on 25 mg prednisolone in July 2016 which gave me a good amount of relief but the GP after a week gave me 30mg, the Rheumatology dept immediately in the next 2 weeks reduced to 25mg and then I've been reducing slowly, now at 10mg, but pain started at the 14-12 area of reduction and at 10 mg it's really bad after being so comfortable for went to the Rheumatology dept this week, they want me to continue to reduce as they want me off prednisolone. I am also on Plaquenil for sjogrens, have autoimmune hypothyroidism (not medicated)as bloods normal at present. I have had two episodes of posterior vitreous detachment since August too.The Rheumatology dept want me to try azathioprine soon too,, as he said with the pain and sleep quality poor he thinks I have fibromyalgia too, but I think the pain is from reducing the prednisolone. 

I have done my first plane journies since diagnosis, and I wonder if that has thrown me out re the pain control 5 hour each way. The doctors have never been convinced re pmr just the GP that put me on the steroids, who has now left.

I've had a second opinion too.

I tried to go back to work too, and managed 7 weeks and increased my hours steadily on a phased return and only got up to 8.5 hours clinical my shifts should be 11.5 and can't have phased return again. I have another mouth procedure for implants in 11 days so will still be off work for that. 

I had a HR appointment this week and occupational Health appointment on Wednesday so really struggling, pain fatigue at home let alone work. I have 1  year to go in April before retirement I will be 54 in April. 

This is not how I wanted to finish my career. Just really struggling at the moment, I hurt if I rest I hurt if I move.

Really sorry to go on just feel lost ATM. 

Take care all of you.

0 likes, 24 replies

24 Replies

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  • adette01750
    adette01750

    Posted

    Thank you everyone, yes I might take someone next time, and thank you Eileen I will ask what reason they don't think I have PMR, I did have a CRP of 6 and ESR of 76 at the beginning and prednisolone stopped the pain and reduced my bloods to normal, now CRP 7 I wish I knew my ESR will know I suppose when they ring. 

    Have a nice weekend everyone.

    xx

  • amkoffee
    amkoffee adette01750

    Posted

    It would be nice if all the doctors would get together and look at all the test results and be up on all the current information on PMR and all the other diseases but that's just wishful thinking.

    I too am having problems with getting to 10 mg and below. And my inflamation markers are at the high normal level now too. But I don't really care. I hurt like hell when I get there and I'm going to fight with tooth and nail to go as slow as I want to get past this.

    You may have to fight too. Be your own advocate. Stand up to these doctors and demand some consideration for your pain. After all it's your body and your pain, not theirs.

    • adette01750
      adette01750 amkoffee

      Posted

      Well said, I wish I was confident and wish I could do it, but I'm too respectful I think. 

      you are so right!!! I will have to practice. 

      Im thinking of going back to 12 mg for a week and try again, but they want to see me end of April so will have to try to get down again by then, or lower and it wouldn't be possible in the time scale I don't think. 

    • EileenH
      EileenH adette01750

      Posted

      That way lies disaster - forcing a reduciion into a time constraint is where they go wrong.
    • adette01750
      adette01750 EileenH

      Posted

      I know, that's why I feel like this I'm trying too hard to please them rather than  keeping myself comfortable.

      I will just stay at 10 now until I go and drop to 9 the week before maybe. I know he won't be happy though. It's just I've read so many times on here how it's not worth taking steroids if they are not working, but the reason they are not working is the reduction I'm so sure of that. 

      Thank you for your help 

    • Anhaga
      Anhaga adette01750

      Posted

      Adette, please don't worry about whether "they" are happy.  You are the one who should be happy.  You are the one with the pain, with the loss of quality of life.  They should be concerned about your happiness and wellbeing. ?

    • adette01750
      adette01750 Anhaga

      Posted

      Anhaga, thank you for those kind words, I just wish the doctors would understand what we go through before we even get to ask for their help, and they just want to pull the rug from under our feet, just when life is liveable again. 
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