If its not one thing it's another!

As my fellow sufferers know, I had my first cycle of rituximab I April this year after failing on humira and enbrel. I went for my 12 week assessment however was still in a lot of pain so was given yet another steroid injection to see me through. Anyway I've suffered with a stiff neck for a few years but have always been told it was wear and tear, nothing to do with my RA,,,,, anyway as the consultant was there I told her that my neck was now extremely painfully and very swollen. She reluctantly had a look and said it was extremely swollen and sent me for a neck x ray and suggested some physio. I waited and waited for the results and heard nothing so I decided I'd chase it up myself as you do. Anyway I was told the report was back but the nurse couldn't interpret what it said and would have to speak with a consultant. A week later still no news so I rang yesterday only for the nurse to tell me that I have to go for an MRI. I asked why but guess what. She couldn't answer any questions so why didn't the bloody consultant ring me. I'm now worried sick and awaiting an appointment which could take weeks. Has anybody else had neck problems which resulted in an MRI????helppppppppppp

Desperate Donna x

13 Replies

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  • Hi Donna, I really feel for you all this pain you are going through....and what with Health Professionals not keeping you informed is...well....downright unprofessional!! I don't know about you but sometimes I feel like banging all their heads together and to make them think about how their actions affect us...their patients they are supposed to care for!! And yes....I've always had to chase up my results...kinda used to it now.

    I haven't had any neck problems but several years ago had terrible lower back pain which I had to have an MRI for. Still no conclusion even now as to what the problem was/is as now and then it still flares up....I have a nagging suspicion it maybe RA related...or at least something along those lines.

    Anyway. I really hope you don't have to wait too long....my advice is to keep pushing & pestering them. Let us all know how you get on.

    Take care & gentle hugs xx

  • Thanks for response luthien, I have generally had really good communication with my medical team but just lately they are so slack. I don't think they realise how upsetting and stressful it is for us whilst awaiting results. I don't know about you but I'm a worrier and the state I've got myself in is unacceptable. My lovely husband has this morning offered to pay for me a private full body scan so we can see exactly whats going on. I've been researching this morning but it is quite expensive, kinda thinking I've paid my taxes I should wait but who knows how long the wait will be... I'm ranting again aren't I?? Sorry. Thanks again for answering me. Xx

  • Don't apologise for ranting....that's what we're here for.....so that we can rant & let off steam....we all understand the pain, frustration, anxiety etc that we all go through.

    xxx

  • Thanks

  • Hi donnalouisec i am going through exactly the same thing. Mri came back ok, i was told it was all conected with the problems i have with my shoulder. I have had injections over the last 12 months & i am going to tell orthopaedics next month no more injections as they dont work, so what are they going to do next. Be prepared to wait upto 6 weeks for your mri results. Keep strong , hope you get it sorted. Xx Alison

  • Hi DonnaLouise, so sorry to see the pain you are in. Have you by any chance had a car accident in the last few years which has caused damage to your neck perhaps without you realising it? I had severe whiplash some years ago and damaged the top two vertebra and was put in a collar for a month to support the neck. I still get problems with it even now but my Rheumy says it is not RA it is because of the whiplash which stretched all the tendons and ligaments as well as crushing the vertebra. It might be worth thinking about anyway,.

    Good luck with the tests you have to have. At least you will then know if any further treatment is needed. Keep pushing for a response from your consultant. Can you ring his secretary? I always contact mine via e mail and usually get a more or less immediate response or a phone call from him. Hope you will get some good news soon.

    LavendarLady x

  • There's another person who has had bad neck trouble after Rituximab, Hopefully she'll come on here and tell you about it. I gathered from her posts that it was definitely to do with the Rituximab. Are you up to making a real fuss in order to get information? Have known it to work.

  • Hi this is interesting. My Rheumy wants to change me to the same drug Rituximab but I have refused so far as it can cause (very rarely) swelling of the brain. Not a risk I was prepared to take. Now it seems it causes neck problems as well. I think I will stick to the Enbrel for now. LavendarLady x

  • Hi lavender lady, I understand your concerns I was exactly the same,. I had swelling of the neck before the rituximab, it comes and goes, however this time it's been a little worse. I have tried enbrel & humira but unfortunately it didn't work for me. Since starting rituximab there has been a decrease in my inflammatory markers however I am still experiencing joint pain and swelling. Hope this helps and thanks for the reply xx

  • Donna, how do you "feel" now? Your markers have gone down but you still experience joint-pain and swelling so how has your quality of life improved?

  • Hi,

    My quality of life hasn't improved I've been bed ridden for the past 4 days due to swollen neck & knee. Even my feet hurt now. When I went for my assessment the consultant said I definitely need another cycle of rituximab and has ordered it for October, hence the steroid injection they gave me at the same time..the weird thing about my bloods was I had a gum infection just after the first cycle of ritux and my dentist put me on two combination steroids for 10 days , I'm sure this had an impact on my blood results..

  • OMG, Donna, it sounds terrible, I'm so sorry. I do hope it gets better soon. xxx

  • It was terrible, I ended up having the tooth removed. But it was antibiotics he gave me not steroids... Sorry for the confusion. Outcomes still the same though still bloody agony and now I've found a lump in my thigh!!!

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