I very recently started being treated with an additional medication and was advised to ring the Rheumatoid Nurse if I had any problems.
Well, after three weeks of gradually increasing the dose, I'm having awful problems, so rang the hospital on the number I was given. It's a Voicemail System, where I recorded my details and was informed that I would receive a "Text Call Back Appointment".
I've received a text message saying I have a phone appointment with a nurse specialist on 19 December 24 - at some point in the morning.
But that's 3 days away and I'm struggling to cope now.
Should I trust my instinct and start reducing the dose in advance of this appointment? I feel if I continue at this level of dosage for another 3 days, I'll just be making myself worse.
There's just no way of getting to speak to anyone today, not even PALS are available, so perhaps I have no choice but to do what I think is best.
Just wondered if anyone else has had this experience ie left to their own devices?
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Flinda
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Oh dear no idea really as all hospitals have different systems….…but you could look up the main hospital number….trying to avoid the voice mail system….then try ringing & asking to be put through to rheumatology …..then ……if the operator queries WHO In rheumatology, ask for the rheumy pharmacist. …she should be able to help.
I'm in Wales under Cardiff and the Vale Health Board. I have the RA consultants email, her secretary's email and telephone and the RA nurse team's telephone 'leave a message' number. The RA nurses generally reply within 24 hours sometimes same day. You should be able to email the consultant's secretary. You should find their email on the NHS Health Board website.
Wow. You have the best service ever. In England we are not allowed to contact consultants direct. Nurse takes around 18 days to return our messages. And when I sent an email and letter to the secretaries, for my consultant. I got a nurse phone message, who advised that my gum disease was not related to RA and with 12 years experience she knows all. With persistent I asked that she forward my letter to another consultant who had helped me in the past. The result , an other consultant who was willing to talk to me. Spent 40 mins on the phone with my periodontist , various letteres letter I got the support.
It's not the same in other parts of Wales, i'm in the West and i have a number to ring to leave a message, then someone will call me back in 10 days time. It's not great, but at least it's improved from 4-6 weeks which it was a while ago. Before Covid i could call & get a call back within 48 hours. How times have changed after covid.
So ring switchboard and ask to be connected to your consultants secretary. Alternatively contact your gp and see if they can advise. Unfortunately yo haven’t said what med or what side effects your experiencing, as it may be someone has experienced similar and can advise what they were told.
I’d urge you not to do anything without talking to them as it might be seen that you’re not cooperating with their instructions. I’m not saying they will, but they might as sometimes side effects can take a few days to resolve. If you let them make decision then it’s you’ve really tried etc and can move on. Of course how would they know if you’re taking the right dose? As for the difficulty in getting hold of someone they are so understaffed here it’s a minor victory if you can even get a message through as often the phone lines are locked and you can’t even leave a message. It’s really dreadful and I’m lucky as stable but I’d go private if I had to and I felt it was vital to see someone but even that now might take a couple of weeks plus Christmas and it’s dire. I feel so much sympathy for you it’s dreadful to be in such a situation but think about keeping a record of the side effects and symptoms for when hopefully someone gets back to you. Might you contact GP who might be able to advise you further.
I hear what you are saying but feel I would end up in hospital if I carried on taking this drug. These side effects have been building up and are now intolerable. In the absence of any professional help, I have to resort to what I believe is best for me. Without support being available, we shouldn't be testing out different drugs - its not safe. But thank you for such a long response.
Surely we are not testing drugs as each has gone through rigorous testing before being licensed. Side effects are a different matter and could it be an allergy ? It’s just another couple of days so fingers crossed you’ll get sorted soon.
What is the medication and what are the side effects your experience? If they're extreme it may be worth a visit to the urgent care department at your hospital. They'll contact the rheumatologist if necessary.
I usually can't get through to rheumatology helpline and if I do leave a message it takes 2 weeks to call back. My GP said they can email rheumatology and get a reply if it is needed before then. different places will be different.
Thank you for letting me know your situation. I felt supported when I started taking the new drug, because they gave me a number to call. Now I don't feel supported at all and am left on my own to cope - bed ridden! Had I known I would be so unsupported, I would not have willingly started taking this drug. I know the effects are not right - that is obvious as my symptoms have gradually worsened as the dose increased. To continue along this path would be foolhardy, so I'm weening myself off them, as I can't get to speak to anyone. Speaking to my GP has been impossible since 2020. I now realise that the system of healthcare is broken because basic and simple (but essential) communication isn't possible. Will it ever improve?
It will be good to talk to them on the 19th. I was taking sulphasalazine as well as methotrexate a few weeks ago and had to increase the dose each week, by the end of week 3 I thought I felt rotten (but not as bad as you are just now I realise) and the rheumatology nurse said to stop the sulphasalazine because the side effects were too much. Now I am just on the methotrexate by itself what a relief, I was glad when I got to speak to her.
Yes, this is also reaction to the introduction to sulphasalazine, on top of the methotrexate, and I too have been increasing the dosage week on week.
I didn't feel great from week one, but when I started on the full dose at week four my symptoms became intolerable - which started last Friday. On Saturday I almost collapsed in town! It's as though my brain isn't communicating with my body properly.
I'm currently down to 50% and feel a bit better, but not enough to trust myself going anywhere or doing anything. I'm hoping to be completely off them soon.
Your shared experience is extremely helpful, to give me the confidence that I'm doing the right thing for me. So, thank you so much.
I don't think this medication should be issued to anyone without proper support being available. It's bad enough having to cope with these awful symptoms but when you realise that there's a delay of 3 days to speak to anyone, I think that is an issue that needs looking at.
This platform shouldn't be a substitute for proper care, but I'm glad it's here!
I’d call your GP after reading all your comments and insist they come and see you. The effects you’re feeling may be unrelated to the meds and it’s purely coincidental as it sounds so severe. To be bedridden is not normal and you need more urgent help.
Sadly ……thise were the days. If any patient at my GP surgery even asked, let alone insisted on a home visit …..I dread to think what the reply would be.
I would speak with the GP or the Pharmacist either would be able to advise you correctly and probably have access that we do not. Have you looked at your leaflet with the medication are you experiencing one of the contra indicators listed? If so I would stop taking the medication.
if you're that bad I would call the emergency line. I would also ask to speak with the rheumatologist secretary and ask for a call back. If you're bed ridden it may not be your pills could be anything so you need checked out.
Oh dear, this sounds awful. If you are experiencing severe side effects and can't get through to your GP in this situation, you can call 111 and they will contact your GP on your behalf. They maybe able to give you something to help you manage until your upcoming appointment. Best wishes
I agree with the ringing NHS 111, but I would also follow your gut instincts. I was taking sulphasalazine when I started feeling worse than usual, then I noticed a rash on my legs. My son said mum, it isn't just on your legs, it is everywhere. I stopped immediately. I happen to have my blood tests that day so I went ahead with that and told the nurse at the GP surgery what I had done and she agreed it was the right thing to do.
By the time the nurse got back to me she said would you like to try it again? I refused. When we got teh blood tests results back it showed clearly that I had had a systemic reaction. I had done the right thing to stop immediately as they confirmed later, and it is now in my notes that I have a sensitivity to sulpha.
Listen to your body. And keep trying to get hold of PALS. They may not be able to do anything about badly run rheumatology departments but they need to collect the evidence of harm and potential harm to patients so that they can put pressure on the consultants to sort themselves out.
Hi, Yes, this is also a reaction to Sulphasalazine, but my symptoms are different to yours - it's affecting my balance and nerves. I don't feel confident to go anywhere as I'm feeling dizzy and disorientated.
So, I have no option but to ween myself off them again, without the support of the NHS. To me it is the most reasonable and sensible thing to do. I hope that they will agree with me when they do ring me back on Thursday.
Thank you for explaining your experience to me - this is the kind of advice I was hoping for. I've reduced the dose by 50% and am already feeling a bit better.
As you say, you need to listen to your own body and I won't be trying this medication again.
When I do return to the Consultant Nurse for a review (which should be next week but I haven't received an appointment yet either), I will explain everything then and see what they suggest going forward.
Unfortunately, this experience has left me doubting the level of care and support on offer these days and I'm not sure if I'll have the confidence to trust "the system" in the future.
I can see from the comments that hospitals all operate differently, so maybe it's time for me to request a transfer to somewhere more responsive. I've never had the option to ring or email my Consultant's secretary - that just doesn't exist, so I'm quite surprised that others on here are able to do that.
What a terrible system, you should ring your consultant secretary definitely as you can’t go on like this. I was on MMF and had terrible issues, I was advised to reduce, didn’t work then to stop but no plan until they get a ct scan so I’m in limbo too until that’s done.
hi Flinda, my rheumatologist team also work this way. It’s very difficult to cope with, sometimes they don’t ring you back at all. Nursing care has all but disappeared. I empathise with your struggle.
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