4 Month wait to see nurse

Hi Everyone, I went to see my Rheumatologist on Tuesday, after having 3 different dmards, that gave me a lot of side effects, following this I have just been having steroids for around 5 years, they are great but as soon as I stop taking them I get flare ups that are getting worse and worse. he recommended I start on anti tnf treatment, which I am really quite excited about as have read many good reports about them ( I know its different for everyone) When I tried to make an appointment with the nurse as he'd asked me to the earliest I can be seen is the 29th February next year. Is it usual to wait this long? I expressed to the receptionist that I was sure he wanted me to start on them asap! He sent me straight for a chest xray and I understand it will take a week or so for the results, but is this normal, or is the hospital I attend particularly busy/short staffed?

thank you :)

14 Replies

  • How frustrating. ..do you have contact details for the nurse . Email seems to work well with my lot. Definitely get in touch with the nurse as a starting point. ....February is too long to wait. .

  • No, I don't have any details for the nurse, but I live close to the hospital, I could could pop in and try to speak to her.

  • Hope you get everything sorted out soon Flossie but in regards to coming off steroids most doctors will guide you through coming off steroid medication . When I came off steroids it took me nearly a year to do and I had to drop half a mg at a time. When coming up off any type of medication you need to slowly ween yourself off the stuff. Good luck.

  • 4 months is normal in my area. ~In fact I have been waiting nearly 6 months to get an appointment following re referral.

  • Hi just remembered last night as part of the nice guidelines treatment pathway you should be provided with contact details for your team. I'm sure that nras helpline would be able to advise. M

  • I wonder if the receptionist was at cross-purposes. I see a Rheumy nurse half way between Rheumy appointments, so usually the three month mark though my health authority may differ as I receive an appointment through the post. Just wondering if you do normally & the receptionist doesn't realise it's an extraordinary appointment you're needing? Rheumatology is notoriously understaffed but February isn't an option if your Rheumy's requesting pre anti tnf's checks is it?

    If you have a direct line to the Rheumy nurses I'd try that.

  • February seems unacceptable. Your Pre- Anti TNF checks could be out of date by then. I had to wait about 5 weeks ( Charing Cross Hospital, London). Apart from the X-ray checks, they have to wait for approval from NICE. I was pleasantly surprised how quick that was. If you have been on steroids for 5 years, I'm surprised you haven't got to Anti TNF sooner. I'd definitely try and speak to the. Nurse. Good luck. Jora

  • Do you mind me asking, what Anti TNF treatment are you on? Has it helped you?, Thank you

  • I was on Enbrel. It made a big difference to me, but unfortunately., due to the compromised immune system, I kept getting infections. Each time that happened, I had to stop both Enbrel and Methotrexate. I was then in so much pain that they had to increase the steroids. So they stopped the Enbrel and I'm now just starting Rituximab, but I've got another infection! J

  • Oh, sorry to hear you have another infection, hope it goes soon. Thank you for sharing your experiences with me.x

  • I popped along to the hospital and have spoken to the nurse, once she realised it was a 'start of treatment' appointment and not a routine one (even though I had said this to the receptionist, that he wanted me to start treatment) I have got an appointment for the 8th December. Much better I think, she did say though that this appointment will be for some tests, disease activity score? Im not sure what this is all about, I had just presumed I am able to go on to anti-tnf treatment. Does this mean that theres a chance I wont?

    I am now completely weaned off steroids, I have been burying my head in the sand for such a long time, due to the effects that the 3 dmards had on me and this is why I was on them for so long. After stopping them due to side effects with my breathing, I realised how badly I needed to work with my Rheumatologist and go with what he says.

  • There are certain criteria which need to met before proceeding on anti tnf's & why you need the appointment with your Rheumy nurse I would think, to start the ball rolling. Maybe this will explain fully nras.org.uk/anti-tnfa-treat...

    Good luck. x

  • Thank you. xx

  • Yes the DAS score is crucial. Feet aren't counted ( which is very unfair), but you definitely qualify regarding the need to have tried ( and failed) at at least two DMARDS. Mine were Methotrexate, sulfasalazine and hydroxychloroquine. The last two gave me extreme side effects. Methotrexate helped, but not enough. My ESR and CRP levels were still sky high. Don't be stoic about the pain or your general wellbeing. But if your Rheumy team are putting you forward for Enbrel, it's in their interest to make a strong case. My registrar was very chuffed when I got the go-ahead. Yes, December is better than February, but it might be worth asking them to let you know if they have an earlier cancellation. Good Luck.

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