Update on my Rheumy consultant appointment and Etanercept

valde
valde Member Posts: 271
edited 15. Sep 2016, 14:02 in Living with Arthritis archive
I had my appointment in Thursday. He advised me to go on Etanercept injection one a week together with methotrexate and one hydroxy a day. He increased my folic acid to one a day But not in mtx day. He hopes this will help with the night nausea I still get. I have also agreed to take part in a research programme for 24 weeks. I had all X-rays and tb bloods 3 weeks ago and all good. So I start this on Tuesday when I will have ultrasound on joints and a biopsy on a joint. Two of these biopsy so will be taken in the 24 weeks. I will also get more regular blood tests and appointments in this time. Not looking forward to biopsy but he assured me it is a very small piece they take but I have never had one before. He has also referred me to a hand therapist about my bent painful finger. Has anyone else been on this biologic or taken part in any research programmes. Hope you are all ok and getting through this hot weather.

Comments

  • barbara12
    barbara12 Member Posts: 21,093
    edited 30. Nov -1, 00:00
    Hello valde..you do sound like you have a good rheumy there, and has for the research program, I think that can be a good idea has they are monitoring you more often, but make sure you ask lots of questions , ..and good luck with it all..
    Love
    Barbara
  • stickywicket
    stickywicket Member Posts: 26,251
    edited 30. Nov -1, 00:00
    That does sound like a good appointment, valde, and I hope the new med works for you. Etanercept is more usually known as enbrel and here are some former threads on it http://tinyurl.com/gr7hawu . Like all our meds it works better for some than others. I hope you'll be among those it works well for.

    Well done for agreeing to help with their research. I've done lots of research projects over the years as I see it as a way of putting back some of what we gain from our free NHS. Not all were arthritis connected but I've just been able to help a researcher endorsed by AC http://arthritiscareforum.org.uk/viewtopic.php?f=8&t=46751 I recall one piece of research, about 45 years ago, which involved me attending the nuclear medicine dept repeatedly :? . That was to do with arthritis but I can't remember what.

    Please let's know how you get on both with the meds and the research project.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • valde
    valde Member Posts: 271
    edited 30. Nov -1, 00:00
    Thanks for replies and good wishes. I will keep you informed of how meds and research go. My first appointment tomorrow for biopsy and bloods. Bit nervous re biopsy. Enjoy your afternoon.
  • stickywicket
    stickywicket Member Posts: 26,251
    edited 30. Nov -1, 00:00
    Good luck, valde. I'm thinking of you.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • valde
    valde Member Posts: 271
    edited 30. Nov -1, 00:00
    I went for my reaearch appointment today. Really geared myself up for biopsy but this was not in cards today. Had a thorough examination, ultrasound on joints and answered loads of questions. 2 hour appointment. Lovely nurse and fantastic consultant answered all my questions and took their time. I passed all the tests for the biopsy which I will have 9am Thursday 8th. Apparently if biopsy ok will start new medication 2 weeks after. I will keep you posted how meds and research go. Thanks for your time.
  • stickywicket
    stickywicket Member Posts: 26,251
    edited 30. Nov -1, 00:00
    So, all good so far. I hope that continues.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • valde
    valde Member Posts: 271
    edited 30. Nov -1, 00:00
    Good afternoon
    Update re research for biological. Had more bloods taken today and all joints checked. Blood pressure, more hand scans
    and also a biopsy in the right hand first finger knuckle. Will get the results in a week or so and then decision made re going on biological. It's a long programme 24 weeks in total but worth trying as it not only could help me but research helps others.. The biopsy was the first I have ever had so was apprehensive but I can honestly say it was not too bad. I was given local anaesthetic and a top up during when it got sore as I was told to say. Left me with a sore hand but sure paracetamol will help that. Bit awkward as I have to do everything with left hand as cannot get biopsy area wet for 2 days. Baby wipes will come to the rescue. Will keep you updated.
  • mig
    mig Member Posts: 7,150
    edited 30. Nov -1, 00:00
    Well done Valde first to agreeing to the research and for going through with it and well done for being so positive about it I'm sure that alone will hope. Mig
  • stickywicket
    stickywicket Member Posts: 26,251
    edited 30. Nov -1, 00:00
    I'll second that, valde. Well done you! You'll never know how many people you may be helping. I hope the soreness is a bit better today.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
    Hope the hand is settling now. x
  • valde
    valde Member Posts: 271
    edited 30. Nov -1, 00:00
    Thanks for your kind thoughts. Today hand feels bruised and better than yesterday and I can take off main dressing tomorrow and just have a small plaster on to keep infection away. One handed washing up takes a while though but surprising what can be done when you have to as I am sure a lot of you know. Have a nice evening.
  • frogmorton
    frogmorton Member Posts: 26,675
    edited 30. Nov -1, 00:00
    Well done you Valde I am also very impressed at you going through the biopsy to hopefully help other in future.

    Take care

    Toni xxx
    Love

    Toni xxx
  • valde
    valde Member Posts: 271
    edited 30. Nov -1, 00:00
    Good evening
    Just to let you know I am going for injection training on Monday because the needle is different to the one I use for mtx it is preloaded not one of the small syringes but as I have to be trained it must be different.
    Delivery of injections is Friday and they have to be kept in fridge but taken out before use so at room temp.
    Is anyone else on here on mtx and this new med. If so how do you deal with this this and what days do you take it. Both on same day or different days.
    Also when do you take out fridge to use. I usually inject in morning after shower.
    Sorry for all these Questions but any advice would be grateful for because if someone on 2 injections a week would know the system.
    Thank you so much for listening as you may gather I am a bit nervous about starting this but am stil taking part in the research. X
  • stickywicket
    stickywicket Member Posts: 26,251
    edited 30. Nov -1, 00:00
    Of course you're nervous, valde. I'm sure we all are when starting something new. I know I am. And, somehow, the fact that it's injected makes it more scary. However, lots of people on here do the same as you will be doing and manage very well after the initial collywobbles.

    I just use tablet meth and hydroxy so can't be of much help though I do know one person who takes methotrexate and humira, both by injection, on days next to each other.

    I think she takes it out of the fridge ½ hour before use but I can't be sure.

    As this thread has a different header, you might get more replies if you start a new one entitled something like 'How to inject two meds per week?'

    I do hope all goes well.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • valde
    valde Member Posts: 271
    edited 30. Nov -1, 00:00
    Thank you Sticky I have taken up your suggestion.
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