Neck pain and Rixtumb

I had my first set of infusions in March this year and afterwards I started having neck pain. When I saw the nurse for a follow up she said that this seems to happen as a possible side effect from the infusion. Now though I wake up in the night and could cry with neck pain and it is so stiff I can hardly move it for a couple of hours, the pain does not stop only lessons throughout the day. Is this normal

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  • I didn't experience anything like that. Is this your first lot of infusions? Did the nurse say that you would get this each time you had it, hope that it is just a one off and that you are now ok.

    Wendy xx

  • The nurse said that it only appears to happen after the first set of infusions but in my case it has not gone away but I have an appointment with the rhummy on the 20th so hopefully more will come to light and pain relief!

  • Sounds very bad. Do keep us posted on what happens and what the doctors (as well as the nurses) say about this. I do hope you feel better soon, it sounds as if life is worse since the infusions.

  • So far there has been no improvement in my swollen joints only the neck pain as well. Seeing doctor next month hopefully for some pain relief

  • That sounds awful.....I felt neck pain that goes up to the back of my head when I'm in a flare up. My infusion is Abatacept and I have had a few other drugs via infusion but I have to say I haven't experienced that. Maybe you should keep at the nurse about this but then again it may pass. Ask more questions Ozzy would be my advice! XX

  • My neck is very stiff when I wake up and hurts to move, later it just hurts. It is only my neck that is affected but it feels like the pain spreads across my shoulders, it also feels a bit swollen. I am seeing the doctor again next month to decide whether or not to give me a second set of Rixtumb infusions. it takes so long for us to get any where in finding the drugs to help. The Rixtumb I was told can take upto 27 weeks to show any improvement may be even a second set of infusions. Meanwhile it spreads through our bodies and my hands are becoming more useless as my fingers are turning and I can no longer hold small things or pick them up when they slide through my hands. So fed up I need a holiday, but it always feels better to get things off my chest,

  • Awh Ozzy, you are having a miserable time aren't you? Rixtumb is given every 6/8 months isn't it? Not being able to lift or hold small things I'm afraid are just part of the condition, that's what I find anyhow......if I drop something I know I can't lift I sort of sweep it along to a wall or something else so I will have something to press it against....the things we have to do.....sounds to me like you do need a break away. Take care luv. X

  • thanks that is exactly what a need a break :) Haven't had a holiday in a year so somewhere where I can relax and read my book with no worries about work and housework bliss

  • Oh Ozzy, this sounds very bad indeed. Is there nothing they can now do to reverse the infusions? I suspect not. I've enough trouble with lifting and holding things anyway without it being added to so your predicament is an added marker to me not to have the stuff. I do hope simething can be done to alleviate the RA and the side-effects from the Rituximab. My very best wishes for your improvement and I do hope you get an away break soon xxx

  • Thanks but if they think that it will help you you should give it a go as it has worked wonders for lots of people, I am sero negitive which I think is harder to find the right treatment for,

  • Um..You know , it could be coincidental that your neck pain followed your infusions. Frankly sounds like the vertebrae, discs and nerves in your neck and upper spine may need to be checked on...The fact that it is so much worse at night, when your neck may be in an abnormal position on the pillow, suggests a possible disc and nerve involvement. I only say this from too much experience. I have had 8 spine surgeries, including the cervical spine, from shoulders up. Would be worth inquiring of the possibility. Soon.

    In the meantime, try lying on your side, with an extra, small pillow on top of the usual one, to fill in the space between your head and shoulder, to keep the spine in alignment. Hope it helps! All the best, Loretxxxx

  • Thanks I will give it a try as it is proberly the only part that I do not add extra support too. I have found that soft cuddly toys are excellent for supporting fingers that hurt at night. I have been waiting two months for an appointment with an OT and I have one on the 20th with my Rhummy doctor.

  • Hope that goes well for you, and gives you some relief. All the best.

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