Good evening everyone. I am still in a lot of pain from the flare. I saw my dr the other week and i was in tears and he said he couldn't give me anything else and that i would have to speak to my rheumy. So i ring my nurse at the hospital and she upped my sulpha and increased my steroids. So last week i order some more sulpha and when i got them today they had only given me enough that i have been on. I had given them them the details from the hospital so you would think i should be trusted to take my drugs properly. So i was there today for a repeat prescription and i i asked about the sulpha and she said because they hadn't had a letter from the hospital they couldn't give me the extra i needed. I went mad i couldn't believe it. The receptionist rang my rheumy after i had given her my number to ring. On Wednesday when i go to the drs to get my prescriptions i am going to speak to the practice manager and make a complaint,also on Wednesday i will also speak to my rheumy nurse to complain as well.

I am still in a lot of pain and so exhausted it is unbelievable. Saturday it was the poppy launch in Nuneaton as my hubby is a veteran and my daughter is the standard bearer for the branch. So i was down there all morning and then Saturday my daughter laid on a poppy party at the club and i went. Since i have been absolutely exhausted,yesterday i was in bed by 2 pm. Tomorrow morning i am going to London to the tower to see the poppies and i know i will be in bed as soon as i get home.

Hugs to everyone.xxxxx

14 Replies

  • The man with the hackle is my hubby...

  • Hi Silvi,

    Sorry to hear that you are in sooooo much pain and having to put up with the inefficiencies of others to boot.

    I have it on good authority that the poppies in London are stunning - to hell with the RD go and have a fab day anyway!

    I hope it picks up for you soon


  • Thank you Ali,i shall enjoy it and i will try and post a photo afterwards. I know i will suffer because it. We are only going down to see them and then we are coming back,no shopping no Harrods

  • Oh Sylvi, you've had more than your fair share haven't you? I hope the increased dose of both help, I would think you're not sleeping well at all either which won't have helped things.

    I know it's a bit shutting the door after the horse has bolted but whenever I've been told to increase Specialist prescribed meds I've always been given written confirmation or it's been done on my behalf if I've been instructed over the phone. So really your Nurse Specialist should have informed your GP of the increase after informing you so the increase in amount could be amended on your rescript. In your situation the receptionist or a person of authority at the Practice should have contacted your Rheumy/Nurse Specialist by name to "respond to advice" under the shared care agreement. I'd do exactly as you're doing & have a word with your PM & your Rheumy nurse as neither of them followed protocol, it certainly doesn't hurt to remind them both of their duties. I don't think it's a matter of not trusting you to take your drugs properly, more a case of neither nurse or receptionist following shared care guidelines. You'll probably find that the steroids increase wouldn't have been as much of an issue as your GP would be expected to know whether or not it was a reasonable increase being a med he can prescribe independently.

    I hope you have a lovely day tomorrow. I've only seen the poppies on telly but close up they'll be quite a sight & sure my dad would have loved to have the opportunity to go. You've a really good excuse to have lots of refreshment stops! Please make sure you're listened need to pace yourself, especially at the mo, but you know that. Be strong. x

    Love the pic.

  • Thank you for your wise words. I will be having words with people. I am looking forward to tomorrow i really am. I will be ringing my nurse as well. Hugs back to you. Xxx

  • Will you post a pic if you take any, please? I'm sure others who won't have chance to go would love to see it, especially those who lost family members in any of the conflicts. I would anyway! x

  • Yes i will post photo for you all. Xxx

  • Thanks Sylvi. Hope the weather keeps fine. x

  • Awww u poor thing my thoughts r with u hope u get some relief soon x

  • Hi, sorry your having such a bad time, hope you have a nice time in London, I have seen some pics of the poppies as my cousin and husband were lucky enough to help plant them a few weeks ago, they felt honoured to be a part of it , I hope this will lift your spirits to see this lovely garden and you get your meds sorted out, you don't need this extra stress, take care Jane x

  • Hi Sylvi,

    Hope you get your meds sorted. The poppies are amazing. I saw them a few weeks ago when I did the midnight walk for Cancer Research. Hope you have a good time, enjoy your day.

    Best wishes

    Beverley (NRAS Helpline)

  • Beverley,i have just got home and to say i am exhausted is an understatement. I have never seen so many people in my life. It was hard work getting to see the poppies,but boy when you do see them they are beautiful. I will now go and write a a post about it. xxx

  • They are aren't they. Hope you have a nice restful evening xxx

  • Thank

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