right decision

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bevman
bevman Member Posts: 107
edited 23. Sep 2010, 12:00 in Chat to our Helpline Team archive
hi help line team my husband has severe RA and i have posted a few times i no that you cannot tell me if i have done the right thing but some kind of advice would be much appreciated.
my husband was under our local hospital for his RA he has been on sulfa ,MTX ,predesalone , and he has been on embrel for the last two years which has not made that much diffrence.The last time we went to see his consultant he told him that there was not that many options left as he has kidney trouble so there is a limit on the drugs he can take.So we decied to have a second oppinion at another hospital the rummy we saw is a proffesor and he said that he would take my husbands care over if he wanted so we agreed to change.we informed his other hospital and he has been to see his new rummy who told him that he would most prob be able to try tocilizumab he was so pleased but when the clinical trial nurse went into it they have said that he would not be sutable now due to his kidney disease my husband is so upset as am i he is in so much pain and life is really misrable.there doesnt seem to be any rummy nurses that you can ring and also as his embrel used to come from his other hospital and they would send him for regular bloods but nobody has said anything about this and he doesent see his new rummy until march 2011.i am really concerned that we have made the wrong decision on switching consultants and hospital .sorry for the long rant
alison

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  • helpline_team
    helpline_team Posts: 3,488
    edited 30. Nov -1, 00:00
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    Hi Alison,

    Thank you for your posting, firstly I would like to say how I am sorry to hear your husband is experiencing so much pain and this difficult decision has left you questioning whether this was the right choice. As I am sure you are already aware, all rheumatologists follow the NICE guidelines which details specific requirements must be met when prescribing particular medication.

    To understand why they are hesitant to prescribe Tocilizumab, you may find it useful to read the NICE guidelines, which you can access here:
    http://www.nice.org.uk/nicemedia/live/13100/50391/50391.pdf

    Unfortunately no one can say whether changing hospitals was the right decision, but I am sensing from the information given that you are unhappy with the treatment that you are receiving, so do remember you can always change back to your original hospital.

    I do hope that writing this all down and discussing this further with your GP will help in deciding where to go from here.

    Best wishes
    Adele
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