1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

Who should co ordinate?

Posted , 7 users are following.

Whisper2003
Whisper2003

Unfortunately, I am under different consultants and surgeons due to conditions of my heart as well as GCA/PMR and they all seem to disagree with each other and I find the stress just exacerbates the pain and flares. Every appointment is a struggle! Blood tests from GP was told 'normal' then had to collect my CRP (raised to 17) from the hospital. Heart op booked for 5 weeks and then not because angiogram not done - the hospital lost the letter. Anyway the angiogram was done on Friday with 3 days warning for which i had to increase from 9mg up to 12mg as pain increased excessively, solely down to stress, I'm sure! All went well with clear arteries but had to be injected with valium twice - lovely at the time but not so good a day later. CRP down to 12. GP wants to talk to me tomorrow about raised CRP, I think and Rheumi wants me on methotrexate or leflonimide on 3 February! He doesn't consider the heart a problem despite the cardioversion in April and open heart surgery looming! I despair.

3 likes, 9 replies

9 Replies

  • lodgerUK_NE
    lodgerUK_NE Whisper2003

    Posted

    Visit or contact PALS (Patient advice and liaison services)  at your hospital by phone -  and tell them all of your problems that you have listed here, they are duty bound to sort it out for you. .  They will sort it out and you could tell them you would like a 'case conference' of your medics.

    This problem is caused by the change from PCT's to GP Commissioning.  One Consultant just cannot pick up the phone and talk to another, as the GP is paying the bill.  

    • gillian81509
      gillian81509 lodgerUK_NE

      Posted

      I've done that as the new system is dangerous

      urology put me on meds cardiotoxic to heart post cardioversion as I was on amoderine

      Gujarat didn't liaise with cardio

      General meds didn't liaise with anyone and so on

      you can contact

      powher free advocacy service to assist you with templates on correct letters and then pals can organise it all

      invaluable service

    • Whisper2003
      Whisper2003 lodgerUK_NE

      Posted

      Very interesting and something I was unaware of so thank you for that. Laptop has only just started to work and I had trouble logging in! All is sent to try us. I looked up PALS on this site and was redirected to a claims company which was a little worrying as I'm really not inteested in suing anyone! I will try again for their number. Now am more concerned that I should also change my GP.
    • Whisper2003
      Whisper2003 gillian81509

      Posted

      Thank you, Gillian, and how scary for you! I hope things run more smoothly for you now and that you are getting better. 
  • EileenH
    EileenH Whisper2003

    Posted

    Oh to have the old-fashioned system back that actually worked for complex patients! Mercifully they still use it here - on the medical ward someone does a ward round every morning and then there is a conference after lunch with all the specialists together where each patient is discussed as necessary and a second ward round done on the basis of that. All blood tests are done by the hospital phlebotomy unit - someone goes to clinics in the country. For this hospital, it is all accessible to everyone concerned on the computer! That only becomes a problem when you have to go down to the big central hospital - but before you leave you have the results and a letter pressed into your hand to take with you. Or it is posted to YOU as soon as the report has been done. 

    A very large part of the NHS failings at present are due to poor communication - I hope lodger's recommendation of PALS can help you sort it out.

    • Whisper2003
      Whisper2003 EileenH

      Posted

      It sounds like bliss! Maybe move to Italy then! I have ended up under 5 different hospitals! Chasing notes seems to be continuous. On the trolley before Angiogram had to constantly be on guard to check each drug would be first checked out with the other medications I am on. I was so hyper by procedure time I had to ask for a sedative - which was great at the time but I knew about it for the next couple of days. I thought I'd been on a bender!
  • teenyjeeny
    teenyjeeny Whisper2003

    Posted

    I know exactly what you are going through as I have so many things wrong with me as well . I am waiting heart op and hernia op and the stress has made my PMR flare up just as I was getting down on pred now on 10 mg but my eyes are playing up now  ans have got styes in both eyes never had them before its the stress I guess

     

    • Whisper2003
      Whisper2003 teenyjeeny

      Posted

      So sorry for your problems too. Stress certainly seems to play a big part in this condition. Phone consultation today with GP not good as she isn't up to date with heart side and wants me on Methotrexate now to decrease steroids! Fast reductions insisted upon have created flares.I was on 9 mg/8 mg after 11 months GCA/PMR. She said pred causing more problems than Methotrexate would and she knows many patients reducing succesfully on it. So I countered with what I learnt on here from you lovely suffering people! I disagreed because I don't think introducing another strong drug would be beneficial to me at the moment. My eyes not good either but mine is more blurry, starry, visual aura type that last about 40 minutes.
  • lodgerUK_NE
    lodgerUK_NE Whisper2003

    Posted

    Whisper 2003

    Type PALS into your serach engine.  Then read it, orring one of the hospitals you are attending and ask to be put through to PALS.

     

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.