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new post about tocilizumab

sunflowerssunflowers Posts: 3
edited 23. Jun 2016, 03:52 in Say Hello Archive
Hi
My name is Susan and I've been diagnosed with some sort of inflammatory arthritis for 8 years. I have negative factor in my blood. I've been on every sort of drug and either they don't work or I am intolerant of them.
My latest drug is tocilizumab and I was on it IV/monthly for a good while. It worked fairly well but I still had pain. I was switched to sub cut/weekly injections and over the last 3 months I've had my worst flare up ever. I'm back on steroids, had a general steroid injection plus one into my finger and one into my shoulder. The joint specific injections helped for a while.
When I saw my consultant a couple of weeks ago he said that he'd had a few people relapse when they moved from IV to sub cut tocilizumab. I wonder if anyone else has heard or experienced this.

I am fairly desperate as there's no much else he can offer me and meanwhile I'm unable to work and am in pain in about 5 joints including right across my back.
regards
Susan :deckchair:

Comments

  • moderatormoderator Posts: 4,091 mod
    edited 30. Nov -1, 00:00
    Hello Susan

    Welcome to Arthritis Care Forums. As mods we are here to help with any problems you may have on the message boards.

    There are lots of lovely people here with a wide range of experiences with arthritis and the problems of living with the condition. Just join in wherever you like you will be made very welcome.

    Back pain can be very debilitating and exhausting. The Arthritis Care website has a section on "Coping With Pain" and a booklet you can download: https://www.arthritiscare.org.uk/managing-arthritis/coping-with-pain which you may find helpful.

    I look forward to seeing you posting on the boards.

    All best wishes
    Mod Bryn
  • stickywicketstickywicket Posts: 25,871
    edited 30. Nov -1, 00:00
    Hi Susan and welcome from me, too.

    I'm sorry to read of your problems with the meds and especially that the sub-cut tocilizumab isn't helping. I've never had it as I get by on a combination of methotrexate and hydroxychloroquine.

    It's a bit quiet on here right now but, with luck, you'll get more replies if you re-post on the Living With Arthritis forum. Also, here are some previous posts about tocilizumab though I'm afraid there's no way of sorting them into what might or might not be relevant for you. http://tinyurl.com/z9w65uv

    Steroid jabs only work for a limited time. In fact, they don't work at all for some. And the pills are a mixed blessing so I can understand your wish to find a biologic / DMARD that works well for you. Can you not go back on to the infusions?

    Is the back pain actually arthritis? I'm asking because, although it can affect the spine, I've not heard of it going 'right across' the back. Whenever I've had anything like that it's been muscular. Could you have pulled a muscle in trying to 'spare' a joint? If so, physio might help.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • sunflowerssunflowers Posts: 3
    edited 30. Nov -1, 00:00
    Hi Susan and welcome from me, too.

    I'm sorry to read of your problems with the meds and especially that the sub-cut tocilizumab isn't helping. I've never had it as I get by on a combination of methotrexate and hydroxychloroquine.

    It's a bit quiet on here right now but, with luck, you'll get more replies if you re-post on the Living With Arthritis forum. Also, here are some previous posts about tocilizumab though I'm afraid there's no way of sorting them into what might or might not be relevant for you. http://tinyurl.com/z9w65uv

    Steroid jabs only work for a limited time. In fact, they don't work at all for some. And the pills are a mixed blessing so I can understand your wish to find a biologic / DMARD that works well for you. Can you not go back on to the infusions?

    Is the back pain actually arthritis? I'm asking because, although it can affect the spine, I've not heard of it going 'right across' the back. Whenever I've had anything like that it's been muscular. Could you have pulled a muscle in trying to 'spare' a joint? If so, physio might help.

    Hi, thank you so much for your reply.
    Sorry, I should have added that I am back on the monthly infusions.
    The back pain is odd as I know that it's not typical to get that sort of pain with the arthritis. Truthfully, they don't know exactly what I've got. I'm supposed to be getting an appt for physio.
    I will post in the other forum to see if I get more replies. I was just interested to see if there are other people who have done less well on the weekly injections.
    Thanks for your support
    Susan
  • stickywicketstickywicket Posts: 25,871
    edited 30. Nov -1, 00:00
    I don't recall anyone mentioning it but that doesn't mean to say it hasn't happened.

    It's very common for people to have a diagnosis of 'inflammatory arthrtitis' with no specific 'denomination' forthcoming for a long, long time or, indeed, ever in some cases. It doesn't matter too much as the meds are the same. The main thing is to get on the meds. I hope the renewed infusions will soon begin to work as before.

    The physio would know more about the back pain than I do. All I know is that, apart from the neck area, my back's pretty good but still I used to pull muscles regularly until I took up Riding for the Disabled. Riding is great for core muscle strength. I don't do it anymore but I keep up some basic core strength exercises and the back problems only kick in when I get lax with them. This might help https://www.arthritiscare.org.uk/managing-arthritis/diet-and-exercise/exercise-and-arthritis
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
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