I have been on a biologic Hyrimox adalimumab for a little over 3 months.
At the start and very quickly it worked brilliantly to reduce pain and this lasted about a month.
I then started getting far worse. The rheumatoid arthritis spread to parts of the body that it has not been before i.e severe pain in the legs, heels and toes.
My right wrist, which was always my good wrist is visibly swelling and more painful than my left wrist now. I rang the NHS hospital rheumatology helpline and they said they need me to finish the full 6 months course of the biologic because sometimes it starts working later on. She also said during coronavirus lockdown they were not switching biologics. Apart from cocodomol they gave me a steroid injection. Previous to the biologic a steroid injection would give me relief for 2 weeks, but this time it just helped a very little bit and after 3 days the pain came back as strong as ever. The pain is very bad including at night. I spoke to my GP and she increased the dose of cocodomol .
My GP asked me to ask the hospital to write to her to recommend a stronger pain killer. The nurse on the rheumatology helpline said some people use tramadol and I didn't quite get what she said but she seemed to be saying that we should tell the GP to contact the rheumatology department if she doesn't know what stronger pain killers to prescribe.
The nurse from health at home, who deliver the biologic, told me to contact the rheumatology helpline because she said that if the biologic doesn't work after 3 months it never will, however the nurse from the rheumatology helpline disagreed.
The nurse at the rheumatology helpline has communicated irritation with me and raised her voice to me asking me why I was calling again as there was nothing further they could do. I was so upset I was in tears.
I am in terrible pain and the thought of almost another 3 months of this pain is unbearable. I also don't feel that the nurse from the rheumatology helpline cares about this and she is not helping me to find a solution for the pain. Also her whole manner communicates that she is irritated by me and does not want me to phone the helpline. She asked me "Why are you calling, you have already called about this" She doesn't seem to realise it is very hard to live with agonising pain and I rely on the hospital to help me more effectively with this.
I feel really desperate with this. If anyone can give me any helpful advice I would really appreciate it. Thank you.
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ma73jon
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I’m so sorry your suffering. The nurses attitude stinks. If this was me I would email your Rheumatologists secretary explain everything including how this nurse is treating you. No one should be left to suffer. I hope you can get so help quickly
You have the right to be given some form of pain relief. I personally see my local GP for pain relief, so we have worked from paracetamol to cocodomol, nefopam and 2 years ago tramadol. Now I take a m ix of p aracetamol and co codamol and it helps but does not stop day to day pain but it takes edge off.
I personally deal with pain meds this way and RA drugs with rheumy team. It sounds like you need help fast and your GP should be able to discuss best options based on the RA drugs you are on.
Get help you need it as pain is just horrible and wears you down physically and mentally.
Assume rhemy team might still be under pressure with covid so hope this is why she was rufe?
I'm sorry to hear that you're suffering, relentless pain is so debilitating and consumes all your conscious thought. It's a shame that the rheumatology help line couldn't be more sympathetic and helpful.
Personally I have always had RA drugs from rheumatology and pain relief from my GP who cares for my day to day health. I take a biologic called abatacept which is definitely improving control my disease and the GP prescribes cocodamol for pain, with naproxen which is an anti inflammatory. In addition I have a pain patch which is for 24 hour pain relief, it's opiate based and changed once a week, again from the GP. I would suggest at this point your GP is the person to work with for effective pain relief.
If you are concerned about the response from or attitude of the rheumy nurse you could speak to PALS at the hospital and ask their advise.
I hope things settle for you soon. As another thought have you seen a rheumatology occupational therapist about ways to protect painful joints? They are able to suggest tools and equipment that might help and supply splints to support painful joints, I have found them very understanding and helpful, and always turn to my wrist, ankle and thumb splints if I have joint pain from over doing it.
Thanks very much for your reply. Last time I saw my rheumatologist I actually asked to be referred to an occupational therapist. She said that only someone who works for the NHS can be referred to this. This doesn't make any sense to me. I think she misunderstood me as English is not her first language. I was embarrassed to explain that I wanted to be referred to an occupational therapist and precisely what I meant, so I let it go. How could I be referred to an Rheumatoid occupational therapist? Could I go through my GP? Thanks.
I'm not sure if the GP can refer, it has to be via the rheumatology department here, but hospitals vary. I wonder if she thought you meant occupational health who deal with the health of employees. It might be worth a phone call to the consultant's Secretary to enquire whether he would do a referal, or maybe the PALS service of the hospital who liaise between patients and the organisation. It's also worth a phone call to the GP to ask if they can refer.
How effective are you finding Abatacept , how long and how often do you have the infusions , any side effects ? ( Rituximab hasn’t worked for me and consultant says either try another Rituximab or try Abatacept - have telephone appointment 17 th May ) Many Thanks
Are you going to try another round or go for the abatacept? Just asking as I had one round last year that did nothing but not offered anything else except another round of Rtx.
Oh , I’m not sure ( ultrasound showed inflammation + still feeling unwell , hence lying down daily ) which one to choose - consultant giving me the choice
Thought I’d just nip in here to say I’ve had one round of RTX & it has worked brilliantly for me haven’t needed any pain relief in 6 months...it’s sad it doesn’t work for everyone xx
Hi Weymouth. I self inject abatacept once a week. I was given the option of monthly infusions at the hospital which would mean a couple of hours in the day ward I think, or a weekly injection, as I was already used to injecting methotrexate it seemed an easier option. I've been on it for around 8 months now. It has had a wonderful effect on my RA, greatly reduced pain, swelling and inflammation, though I still have some pain when I overdo things or if I am having a flare, but they are few and far between. In terms of side effects they are much better than methotrexate, no nausea or crushing fatigue, I get some dizziness but it's manageable for the relief it gives me. My hands are the best they have been in years. For me it's been the best treatment in 15 years I've had RA.
Thank you for your detailed reply - very pleased you’ve found Abatacept highly affective ; very encouraging . Thinking of writing a letter up front , to prevent any forgetfulness during the phone call .
I haven't tried either of those. Because I have a lung condition called bronchiectasis most biologics are not available to me, I understand that abatacept works in a different way so is suitable.
I think writing a list of what you need to know or have answers for is a good idea. I always take a list with me to rheumatology appointments, sometimes with photos of particularly bad episodes of sustained swelling.
Well , Rheumy Nurse rang this morning , saying Consultant has Tocilizumab , in mind for me , ( not Abatacept ) , but he’s booked a further echocardiogram as previous one unclear , ( been having few weeks of breathlessness ) , sure he said Abatacept .. but never mind , I’ll go with Tocilizumab
It's good to hear your consultant is on the ball trying find the right next step for you. Hope they can get any necessary per-checks done soon so things can be moved along.
I feel for you. I have been in severe pain for months with rheumatoid. But i have been in agony with what the consultant called Costochondritis, which i never believed it was as i have had this for about a year. It's got worse since January, to the extent that i am reduced to tears sometimes. The tramadol i take is doing nothing for the pain. However my GP has actually listened to me at last and believes it is from trauma to my chest wall that i got during two nasty falls in the last year. Rheumatology would not listen to this and started me on Tociluzimab which has not yet kicked in after 6 weeks. And i've had to stop because of a chest infection. My GP says because it's been going on for so long without treatment that there's not a lot can be done other than find a medication that will ease the pain. He has prescribed Gabapentin. I have to increase this over a number of weeks so i'm keeping my fingers crossed. I had the same reaction as you when i saw a consultant (not my usual one) recently. I was so desperate for help that i agreed to go along to see her. She more or less said i had nothing wrong and the pain was down to fibromyalgia, despite the fact i have a huge swelling on my left side and had a job to walk due to the pain. Her attitude was awful and i felt the size of a mouse coming out of there. Normally i would not have taken the way she spoke to me - but that's what extreme pain can do to your confidence. This moan of mine hasn't got much advice for you other than ask to see or speak to someone else, It's mainly so you know you're not alone in your pain or desperation. I've only recently joined this site but i find venting my feelings here and the responses i get make me feel i'm not alone. Stay safe and take care. Try your GP again !
My first instinct is that it is very unprofessional for anyone to make you cry when it is clear that you are already in a distressed state, let alone raise their voice. The role of the specialist nurse is not only to support you medically but also to offer you reassurance.
If you feel strong enough it might be worth writing a letter, perhaps to the consultant, addressing your very legitamate concerns. Perhaps acknowledge that everyone is dealing with a very stressful situation but this includes yourself. You were acting in full faith firstly upon the suggestion of the GP (pain relief) and then following contraditory information given by the nurse from health at home about how long you should be waiting for the biologic to work. There is no doubt that the more voices that enter your health care the more opportunities there are for contraditory and sometimes confusing advice that adds to our distress.
Please don't let this experience stop you from seeking help, it is your right - explain that you are trying to understand, as you are being given different advice and are seeking relief from pain - you are not wanting to be a nuisance but felt distressed after your last call and need to feel that you can still seek help -
Have you spoken to someone at NRAS - they may be able to talk you through this so that feel able to address this. Best to deal with it than to let it emotionally drain you.
Hi RosieA , thank you very much for the advise and kind word's and understanding .
I am not a "complain" person and you are right that sometimes its very confuseing about all this treatment and answer from nurse , I didn't see a proper doctor for 6 months or more ...
I will try to talk with someone from NRAS good idea .
I do so hope it works for you. Do let us know. I am also in the position of having to call the advise line more than I would wish as MTX is making me feel dreadful for a couple of days. So much so that I spend a day on the settee howling, followed by a day in a stupor. Joints reverting to pre-diagnosis, so I like you, are seeking additional support. It is all so very hard but with perseverence we will come through it.
I’m so sorry to hear how much pain you are in and your experience with the RA nurse.
I have nothing much to add to the other great reply’s I’m afraid.
It sounds a really difficult situation for you bless you. I would contact your GP and chat through what you have been advised and ask if they could perhaps contact your team for further advice about the best way to support you with your pain relief.
GP’s and rheumatology teams seem to all operate in their own way. You need some further support with your pain meds in the short term.
When I have been in touch with the RA nurses they always send my GP a letter and a copy sent to me too with a summary of the conversation and the plan going forward. I think ringing your GP to explore more pain relief options is the way forward for the moment.
Contacting NRAS for advice too may help. I honestly don’t know where I would be without the support from this lovely group.
I am so sorry, how awful for you - nothing worse than being in pain
The nurse's response sounds shocking - why is she raising her voice to you?! I know they are under pressure, but you are under a lot of pressure too and relying on them for help, so I am so sorry you are not getting support from her. It is bad enough having a debilitating illness and pain to deal with and if you're anything like me, I'm sure you already worry about 'making a fuss' (not that you should!), so to have such an unsympathetic response must have made you feel really terrible.
I would turn to your GP if possible, perhaps they can contact the department themselves?
Hi dawkin_s , thank you for understanding , I am not a "complain" person , I know the Hospital is in pressure because of the virus but I am in such bad pain ...and she think(the nurse) I have a pleasure to call and talk with them .
I am on enbrel injections but also have fentanyl patch every three days and keeps me ok unless I have a flare up
They are so rude some of these people they should not be in their jobs with such attitudes , good luck , pain that nobody can see is so hard to cope with 🌸
Sorry you are in so much pain. I know the specialist nurses will be under a lot of stress just now as all medical staff. She may be worried about a loved one or under stress at home as well as work. I know that is no excuse for speaking to you in that manner but it could be a reason. Try not to take it personally and don't get worked up by it or your pain will be worse. Try to relax and definitely speak to your GP again. I hope you get something sorted out soon. x
I think this nurse is getting in the way. Although many services went online or by phone during lockdown, there’s been a real effort over the last week to get normal hospital services up and running.
I would complain via Pals but also try contacting your rheumatologist direct via their secretary..ask for a phone call from him/her.
Talk to GP and see if they will prescribe some heavy duty painkillers for a short time to get you through xx
I can understand how you feel. However, I do think the rheumy nurse should be more sympathetic of you since you are in great pain.
I am already in remission now so I do not have pain anymore. However, at the early stage of my RA, I took many different kind of painkiller along with steroid but I found them not helping. I was still in great pain for about 6 months until methotrexate started to work on me. I complaint to my rheumy, she changed to different kind of painkiller for me but still no use. When mtx started to work, I could feel right away the pain level reduced and I demanded more mtx to reduce the pain further so that I could function better. Unfortunately, my rheumy said that mtx is a very strong medicine, she could only increase the dosage slowly for me.
What I did was during that many months, I kept away from people potentially touching me. I would be in tear if anyone touched me accidentally. I would stand still when I saw anyone coming my way and let him or her passed first before I moved.
Life was painful and helpless those days. I know DMARDs take time to work on us, I am not sure about biology and suggest you Google more beside just checking with the rheumy nurse. I always believe to read up more to help controlling our situation better.
OMG how rude is that nurse you want to report her to PALS you can ring the hospital switchboard and ask for them and they will put you through. Go to A&E and see what they can do to help you darling. Ask your dr to give you paracetamol and codiene seprately (excuse spelling) as you will get a better density, i hope that will help you.xxx
Firstly cocodomol is not going to help with your described pain, tramadol (max 8 per day) and three Diclofenac (or equivalent) should help with the pain. A kenalog injection straight into the location of pain rather than your backside is better. I was put on a cheaper biological medication after being on enbrel, gave it 3 months I deteriorated and was put back on my original biological. There are other biological meds out there some more expensive than others so there will be one out there for you.
I also wouldn’t worry about a grumpy nurse or health worker on the phone. Speak to your GP who should send a message to your rheumatologist to try another biological meds along with some pain relief medication.
You will get there, I have Polyarthritis RA that effected every joint from my toes to my jaw and have been stable for 7 years so don’t get too down on yourself and persevere in relation finding a biological meds that’s suits alongside methotrexate if that’s an option.
That is not acceptable, she shouldn't be speaking to you like that and sounds like she is in the wrong job. When we are in so much pain the last thing we need is that attitude. You are entitled to get some decent pain relief and it is very hard and disappointing when the biologics don't seem to work. I was on enbrel for a few months and it made me worse than ever and yet some people get on so well with it. It is very frustrating trying to get the right thing and with the corona virus it makes it even harder. I think you should either call or email and ask for a consultant to get in touch with you and see what they suggest. I remember a lovely nurse telling me years ago that it was the ones that shout the loudest that get so don't allow anyone to make you feel a nuisance as they are not going through what we are. I wish you well and hope the pain eases very soon. Take care x
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