I have now been 5 months on Hyrimoz with leflunomide and prednisolone and hydroxychloroquine. I was switched to the biologic because I had been on 3 DMARDs for several years before without success. For the first month, Hyrimoz worked brilliantly but then stopped working completely and my RA got much worse. The pain is worse than ever before and it has spread in the past 5 months to other parts of the body where it never was before, the legs, lower back, right hand. The nurse on the nurse helpline is completely unsympathetic if not downright hostile. She basically gives the impression she does not want me to call. I am on Zapain (Codeine/Paracetemol) for pain but it is not effective. The doctor cancelled the 3 month review appointment (due to "Covid") and the nurse cancelled the latest appointment (due to "Covid"). I do not understand why a telephone appointment needs to be cancelled due to COVID. No replacement appointments were rescheduled. Their message previously has been that I need to finish the 6 months course of Hyrimoz, even if it is not working, as it sometimes takes a while to kick in, so I have been doing so, but at 5 months it is completely ineffective. I told my GP about this and he reassured me that they said they would bring my follow up appointment forward but I have heard nothing from them. I have left a message for PALS but have not heard from them. Is everyone getting these problems during the COVID period or am I getting a worse service than average? My main concern now is that I see a doctor for a change of medication in a month when I have completed the 6 months on Hyrimoz. Also, is it possible to request a change of hospital? Is there any point or are they all as bad as each other? Thanks for your help.
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I would keep pestering them sounds to me you need a steroid injection to get you over this yes it do s take time for meds to work but you shouldn’t be in pain like you are keep ringing them if no action taken tell them you will ring 111 as the pain is horrendous good luck keep your chin up we’ve all been there bloody RA 🤞
I should add that that they did not deliver the last lot of biologic medication so I chased them. Eventually I got it a week late. Is that just me or does everyone have this problem?
Some rheumatologists and nurses have been moved to front line services, so they are just not there. Frustrating, but not really their fault.
You can ask for a different consultant, or different hospital. However you may end up going to the back of the queue again so I would hold off at least until up your next review.
One thing you could do is write to your consultant now, and set out how badly you need this appointment and your concerns about the drug not working.
Just to say that there are good clinics out there doing sterling work even in these difficult times. My consultant appointment in June didn't materialise but the nurses have been great, speaking to the consultant and getting medication changes sorted out; each one has been sympathetic and concerned. If you're always getting the same one maybe she's having to hold the fort alone - no help to you, of course but maybe an explanation.
Sorry to hear that you've had such horrible experiences but approaching your consultant directly sounds like a possibility; I was given the phone number of the consultant's secretary as well as the nurse helpline at my first appointment.
It’s a tricky one when you’re in pain and struggling. You are entitled to a second opinion and to change hospitals but I do wonder if, due to Covid, you may actually have a longer wait. It’s probably worth waiting out an additional month to see if the biologic kicks in. In the mean time, perhaps your prednisolone dose needs a tweak? That’s something your GP may be happy to do.
Telephone and other appointments get cancelled if staff from rheumatology (or any other speciality) get redeployed to other areas of the hospital. It’s frustrating but I looks like things are slowly beginning to improve. Worth a call to your GP maybe who can write directly to rheum if concerned?
Our RA team is down to a nurse everyone else had gone to help Covid patients and I'd not want to go to the hospital unless I really had too, one that had several hundred Covid patients until a month or so ago. (my sister is a nurse there). You say Zapain is not working and you must be really unlucky as well as in a lot of pain as it was great when I broke my elbow a few years ago. I don't know when you began the LEF, but it did make my RA worse for a couple of weeks before it put it into remission. It sounds like you need to talk to the GP again perhaps ask for a blood test to see if it shows something else is wrong say an infection. The clinic are all so hard pressed my nephrology appointments are done by phone although the blood tests are still done. And I'd add that 5 months is a long time not to see any improvement so could something else be going. Obviously we don't all respond to medications but it's a fact that Covid means here at least that no new medications are being prescribed for anything other that emergency needs. So you may have to be patient but I'd suggest that you keep a diary of the symptoms so you can show the doctor or nurse exactly how you feel each day which wether you get a second opinion or not might show how your feel calmly and concisely . I hope you get some relief soon. x
I’ve had exactly the same problem, all Rhumatology team including my Doctor dispersed into hospital wards and all appointments cancelled. I’ve struggled on since March this year as the Baracitinib not doing much good. I’ve rang the Rhumatology nurses number on three occasions and left messages and waited over seven days before a call back. Told them that I felt as though I was left out on a limb and there was nobody to turn to at all for help. I explained my problems to her and was told I would be put on an emergency list and as soon as the Rhumatology Doctor returns I would get an appointment, and guess what! the next day I got a call to say I have an appointment in six days time Result!!!! Please persist and keep calling them nobody should be suffering with constant pain. 🤗X
Hi. I've had my August appointment cancelled by the central booking office for the hospital but the letter also said they would send me a telephone appointment soon. I also had a telephone appointment with the diabetes centre cancelled but when I rang the diabetes centre to check they said the central booking office had sent it by mistake and that my telephone appointment would be going ahead. I you case I would write to your consultant and tell him/her that you can't carry on like this as your pain is constant.
I'm sorry to hear your struggling so much. Surely they can prescribe steroid tablets over the phone. I've had that before.
My hospital has been very good. I've had my appointments changed to phone ones which have all gone ahead. It's not as good as face to face as I struggle with his accent, but I'm not complaining.
My care has improved since lockdown, I've had to call the rheumatology helpline twice, received a call back next day and meds changed, organised and delivered to my door with a couple of days.
It's not inevitable that care has got worse since Covid. Keep persuing better care would be my suggestion.
My rheumatology team have been great during lockdown. I had Rituximab in January and was due a 3 month review in April. By mid April I had heard nothing and wasn’t doing great so I called the helpline. I got a call back a few hours later and the nurse took time to discuss how things were and the pros and cons of having steroids at that time. We reached a decision together that I would hold off for a bit to see if the Rituximab started working. She said not to hesitate to call back if I ever felt I just couldn’t cope. It did start working a few weeks later but in early June things began to deteriorate again so I called back. Again they responded in a few hours and arranged for me to see the consultant a few days later. I had a 30 appointment 😳 (never had that much time) and I’m booked in for more Rituximab. I was given lots of great info about my specific risks from Covid too. Absolutely can’t fault them. Forth Valley in Scotland.
Hope you're feeling better now, and you have managed to get some help from your RA team. I have been in a similar situation but my consultant saw me about 3 weeks ago. Sometimes i think it makes you feel a bit better knowing someone is taking notice of you. 🙂
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