Otezla, has anyone else been on this treatment

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krustyzidane
krustyzidane Member Posts: 17
edited 8. Oct 2015, 05:50 in Living with Arthritis archive
Hi, I am just about to start this new treatment called Otezla and was wondering if anyone else is on it or has used it. I was just wondering how bad the side effects were and if it has worked for anyone. Apparently I am the only person in my trust to get this treatment and they are interested to see the outcome. I have been on several biological treatments and anti tnf but nothing has worked. They say this is my finally option as now of the others have worked or my body as developed anti bodies against the ones that have worked for a while. I was diagnosed with rheumatoid arthritis but they say it has now changed to psoratic arthristis. I am having real bad problems with my tendons/ligaments and my back and was wondering if anyone had any advice to help with the pain. I am on a high dose of MST (morphine) but it doesn't take the pain away and its only short lasting. I am having to use Voltoral gel continuously, I think my doctor thinks I am selling it lol. This only seems to help slightly and for a short period of time. The doctors have told me I have calcification in my tendons/ligaments. is it better to keep them active and moving or rest them. Thank you for taking the time to read this and if you have any advice it would be very much appreciated.

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  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
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    Hi krustyzidane

    I have not looked at your past postings but are you by any chance living in Scotland?

    As I understand it NICE has not recommended funding the use of Celgene’s Otezla on the NHS in England and Wales to treat psoriatic arthritis.

    There is a Otezla forum which may well be of some help to you. I googled "Otezla forum" to find one.

    This med is very expensive. I hope it works for you.

    Look after yourself,

    Elna
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • krustyzidane
    krustyzidane Member Posts: 17
    edited 30. Nov -1, 00:00
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    I am in Northern Ireland. The doctor said it was only available in Scotland. I don't think anyone else has it in Northern Ireland as my doctor said the had to ask special permission to get it as I have no other options left. Thank you for the information about the forum. I will check it out. I couldn't find anything on here about it. I hope it works too.
    Thanks
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
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    I'm watching this topic with interest as I've been offered this med as an alternative to biologics. The first, Enbrel has not worked, so I've been trying to learn about this one (in Canada it's called Apremilast). I think my rheum would like me to try it, it's also cheaper here than biologics, I think. I believe it's only been approved for psoriatic arthritis in the past year in Canada.

    If you do try it, please post back with your results and side effects, if you have any.

    Best wishes.
  • frogmorton
    frogmorton Member Posts: 29,426
    edited 30. Nov -1, 00:00
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    Hi krustyzidane

    I have no useful opinion, but would like to wish you luck and to hear how you get on if you try the new drug :)

    Love

    Toni xxx
  • krustyzidane
    krustyzidane Member Posts: 17
    edited 30. Nov -1, 00:00
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    Hi, I have been on the treatment for a month now. I am only starting to get side effects now, thought I had missed them. I think it is starting to have some effect but it is hard to tell. If I wasn't doing anything physical I would probably say I would feel the effects a lot more but I am still trying to work and its quite physical so I am just living on Morphine right now. I will let everyone know if I start to notice anything new.Thanks
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Hello and thanks for the update. I am sorry that the morphine is still required but hats' off to you for continuing to work, I know that needs must but it doesn't help at times, does it? I hope you are able to rest properly when you can and that things start to further improve. I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 27,713
    edited 30. Nov -1, 00:00
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    Oh dear! I hope it kicks in a bit more and soon. I, too, applaud your work ethic but sometimes life gets in the way of our plans. Could you go part time? Do something a little less demanding on the joints? There are those on here who have had to think the unthinkable. I hope you won't be one of them but, please, take care of yourself. It can't be easy doing any kind of work on morphine.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • theresak
    theresak Member Posts: 1,998
    edited 30. Nov -1, 00:00
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    Hi there,

    Sorry, I haven`t heard of this drug, but if all other options have been exhausted, then I very much hope it works for you, preferably soon. It can`t be easy working with that level of pain and discomfort.
  • krustyzidane
    krustyzidane Member Posts: 17
    edited 30. Nov -1, 00:00
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    Thank you for the replies. They are very much appreciated.
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