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Appointment cancelled

Hi everyone
I was supposed to have an appointment with my rheumatologist on 1st April and not surprisingly I received a text this Tuesday saying it had been cancelled due to Covid 19 and that they'd sent me a new appointment in due course. I've been on Hydroxychloroquine for over 3 months and it's not helped at all, if anything the pain is getting worse. I was supposed to be discussing trying a different medication at my appointment (I'd spoken to the nurse a few weeks ago to say the Hydroxychloroquine wasn't working). I phoned and left a message with the rheumatology helpline at the hospital on Tuesday and am hoping I get a call from them a some point (although I know they'll be mega busy right now), just to see if they can put me on a different medication. I know it's such a difficult time for the NHS right now and they're having to do so much, I just worry that I'm going to be stuck for even longer with my rheumatoid arthritis not being controlled and its making my quite anxious and stressed. I know there's nothing much that can really be done about it right now, I just felt like I needed to talk to someone who might understand.
I hope everyone is staying safe and well
Amy xx

Comments

  • Hi Amy, sorry to hear your struggling.

    My apointment last week was cancelled. I've heard some people having apointments changed to telephone, however this wasn't an option for me. I've felt similar to you in not wanting to bug the NHS, so have put off, however I think on monday I'm goign to give the department a call, as was meant to be upping my sulfasalzine / changign to methotrexate. My pain is alot better than it was but still bothersome and my swelling hasn't gone down at all.

    I've been getting by on voltarol, tiger balm , hot water bottles and hot baths just now.

    Have you newly been diagnsoed? Or have you had to change your medications?

    Hope you hear back from them soon!

    xxx

  • Hi Butterfingers
    Thankyou for your response 😊 Sorry you had your appointment cancelled too.
    I was diagnosed nearly 9 years ago but hadn't been on any medication for the past 5 years (it was a stupid decision looking back as its gotten really bad the past year). I started on meds again just before Christmas.
    I'm taking Cocodamol and Gabapentin for pain but it's getting less effecting the longer I take it. I'll leave it until the end of the week and if the rheumatology dept haven't called me by then I might phone my doc to see I she can put me on a month's course of steroids (although I'm not sure she'll want to risk that)
    I hope you manage to get something sorted soon too
    Xxx
  • Hi

    I got my letter on Saturday and my appointment has been changed to over the phone. I realise I'm lucky to get that and also lucky that currently I seem to be stabilised on my latest biological treatment.

    I absolutely understand what you're both saying about not clogging up the NHS at this time, but that's for ones like me who are relatively stable. If you're in increasing pain, you've got to tell them.

    I'm now 3 years from diagnosis and have only in the last 4 months stabilised on a treatment - fingers crossed it keeps going. My health trust requires you to try treatments for 8-12 weeks (unless very severe side effects) before the rheumatologist can make a judgement to change/move you to another treatment. with a lot of the treatments you have to have a 6 to 12 week run out of the old medication, before you can commence the new. So don't delay.

    the only thing my GP was able to offer prior to my first rheumatology appointment was a one off shot of steroid. If either of you have a particular limb or joint - this might be worth a try (to get the best from it- move as little as possible - even round the house - for 24 or better 48 hours). Unless in current circumstances the GP applies discretion re a course of steroids, your best bet might be to keep after rheumatology - even to give you a course of steroids to help with the pain flare.

    Hope you both get call backs so you can at least discuss your situation with your clinics.

    Don't give up, there are a host of different treatments out there.

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