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sharonturner35
sharonturner35 Member Posts: 4
edited 18. Aug 2018, 08:25 in Say Hello Archive
Hi everyone I am Sharon 43 nearly 44 from Paisley Scotland. I have PSA and am really struggling at the moment. I was diagnosed over 10 years ago. I have been on humira for over 6 years fortnightly along with 20mg leflunomide daily but 18-24 months ago it stopped working effectively. I tried benepali which was hopeless then cosentyx which was worse so started back on humira but weekly still along with the leflunomide for past8 months but I still keep flaring. I am back on prednisolone 30mg daily as the intramuscular don't do anything and I have had too many small joint steroid injections they are not wanting to do anymore.
I was told 3 weeks ago i may be starting on remicade infusions but had a call yesterday saying it wouldnt work for me so my Consultant is going back to the beginning pulling out my paper files and looking to start again.

Stelara has been mentioned. Anyone any information on it? Thanks Sharon x

Comments

  • [Deleted User]
    [Deleted User] Posts: 3,636
    edited 30. Nov -1, 00:00
    Hi Sharon Welcome to the forum, so sorry that you are going through a lot of pain at the moment,if you wish to talk to a person by telephone the number is
    0808 800 4050. The forum is full of lovely understanding and encouraging people who will understand what you are going through and reply as soon as they can.
    All the best Christine
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, it's nice to meet you and I am sorry you have had to find us. I too have PsA and take humira and injected meth, things are controlled but not wonderful, mind you after twenty one years I don't think wonderful exists in our creaky world. Many moons ago I took leflunomide but that preferred to give me cracking headaches rather than tackle the arthritis. In 2011 osteoarthritis was diagnosed in addition to the PsA so that adds an interesting twist to life. :wink:

    I have had a rough summer thanks to the extreme heat and excess pollen (I live in East Anglia) but I think that's simply due to overload on my poor benighted system. I have been taking humira for around eight years and began to wonder if it was beginning to lose its effect but my bloods are OK (that's how I know it's 'working' ) and my hospital are happy to keep me on it. Like you I found the steroid joint injections useless and the tablets wonderful but I weaned myself off those as they weren't solving the underlying issues, merely conning me into thinking I was better.

    I recall when I began the humira my consultant told me I would lose the crutches and not need pain relief. I did lose the crutches as I moved on to using a rollator but I don't think that's what she meant. :lol: I keep my pain relief to the minimum so I have room to increase when things worsen, I use 30/500 cocdamol and they provide enough dulling of the sharper edges so I can get on.
    I'm not sure what else to say so I'll shut up now! DD
  • stickywicket
    stickywicket Member Posts: 27,098
    edited 30. Nov -1, 00:00
    Hi Sharon and welcome from me too.

    I've never done the biologics. I have RA and get by on methotrexate and hydroxychloroquine. Neither have I heard of stelara, even by its generic name which I looked up but have already forgotten :roll:

    I do hope they can find something for you, though, as steroids are not a solution - well, they solve one problem while creating others.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, how are things today? DD

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