I went for my monthly blood test yesterday morning at 9 am at my GP surgery. I got into the room and mentioned to her that I think I have yet another allergic reaction to a new medication my rheumy is trying me on - Humira injection. The last reaction I had was pretty dreadful so I was a bit anxious. She told me she couldn't do anything about it - even look at it as that wasn't what the appointment was for. I would have to call back to the surgery at 1.30pm to go on the triage list. I started to cry - like I do a lot at the moment and she looked quite taken a back. She carried don trying to ready me for my blood test. I was in such a state by this point that I removed the tourniquet and said I would make another appointment. She said she couldn't help me with the reaction and once again said I would need to ring my rheumy and call triage later, I said I just would like to know someone's opinion on whether it is a reaction from the injection or something else. She then repeated the same thing she had already said. I was very upset and I am afraid to say the poor nurse received my pent up anger, frustration and upset aimed at the NHS, which has been building for a long time. I told her it is just so unfair that 'no one cares', that I keep been given these meds that make me unwell - but when they do it is so hard to see someone - no one cares. Her response was 'I think it is a little unfair to say I don't care, I mean I can't do anything, I am just a nurse'. I wished her a good day and left, she rushed past me into the reception and shut herself in what I can only imagine is a staffroom. I just about made it to the reception before dissolving into floods of unrestrained, very snotty tears. I was scooped up by a receptionist who took me into a side room, brought me a cup of tea and tissues and listened to me blub my way through the whole sorry tale. I said I was very sorry for my behaviour to the nurse and she said she would tell her so. I waited for 20 minutes - still uncontrollably quietly sobbing until my poor husband arrived, with a chocolate brownie - his way to solve pretty much any problem. I have sent a card to the nurse at the surgery to say sorry. I behaved totally wrong - I know that, but I was a little disappointed that when faced with someone obviously in distress her reaction was to become defensive and leave me alone.
I am struggling at the moment, a lot. I am a qualified therapist, but all of my knowledge and abilities go out of the window when I am trying to deal with my own feelings. I have no motivation and am a little lost.
Sorry for the rant, but I needed to get it out x
Written by
MissChloeScarlett
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Don't apologise , I did it at a Nras regional conference and was thankfully swept up by the organiser as my husband was struck dumb.
It's a lot to deal with and when YOU are the patient it's totally different to talking rationally to your clients. I actually need even full explanations of drugs etc that I used to tell people about!
You feel out of control and vulnerable is the worst part. Call your Rheumy secretary, explain what happened and how you feel and ask her how she can help( she might get you in quickly )
Do cry and talk to the NRAS helpline, they are unbelievably understanding and helpful and I never left the call without feeling better and a plan of action that suited me.
Spoil yourself today and know we have all been there and feel for you xxx
As long as you feel better for it . If as you know it. But as you know if you think it's reactive depression ( I got it) then chat with the GP xxxx loads of love x
I'm so glad that the receptionist was able to scoop you up and help. I think the nurse needs some help with dealing with things that she can't manage without becoming defensive.
I did not shout or rant. I imagine you don't ever get upset or angry and take it out on someone who isn't the main reason, well then you're a better person than me. My treatment as a number or patient rather than an actual person was what upset me. i admitted my behaviour was wrong, but also that there was a better way to deal with someone who was obviously distressed.
I do hope you have taken some of the advice given. Having had RA and many other conditions for so many years I have noticed the NHS has changed, they are just so harassed and seem to have conform to all sort of rules. My lovely Rheumy nurse I had for many years left, as the pressure of work just got to her. I have a new one who is professional, but just lacks that warmth and human touch. Before they changed the formula for Humira I used to go the surgery for my injections every fortnight and got to know the nurses well, so often I would just bring up something I was worried about and if they were able they would advise. Three of my favourite ones have left and they have only taken on one more so they are very pushed now. We have to go to the community hospital for blood tests. One of the things I find very difficult is how long a letter take to get to your GP to action, my long time GP used to take my word for it, but now he waits for the letter first. Frustrating as it is have had to learn to be patient. Sending hugs x
Thank you, I have had jia for 29 years and things has definitely changed over that time, sometimes for the better, but the worse are so much more noticeable, and often have more impact. I also move around lot so making good relationships with medical professionals can be tricky x
Dear Chloe, we have all been there at some point, it's such a rollercoaster ride, especially if you have to keep starting afresh when you move. I hope you will get comfort from the wonderful people on here and keep positive, I have found Humira brilliant, but still need other meds to keep going. Have been offered Rituxamab, as now getting small skin cancers as a possible side effect from Humira, have been on it for 8 years and very reluctant to change, it's a balance really, what you can put up with. Just Hope the antihistamine work for you. Take good care of yourself X
Hi Chloe
Sounds Iike that was the straw that broke the camel's back. I'm glad that the receptionist was kind to you because you deserve kindness. Hopefully you feel better for letting it all out?
Thank you Sophie, she was very kind and gave me tea and tissues. I do feel very alone sometimes, I miss having people to talk to who really understand whose main reason isn't pity. hope you're well xx
Well, we understand, so please reach out and let us be there for you. I agree that the NRAS helpline is a lifesaver. They are the best; so kind and full of wise advice. I used to phone regularly. I think it's hard for people in the 'real world' to get what it's like for us.
P.S. Just saw your previous post where you said you're 31. I'm 28 and was diagnosed 7 years ago. If you want to talk with someone the same age as you, feel free to drop me a message.
That nurse did not deserve an apology....more a kick up the rear end.....you the patient are her priority not her busy schedule being upset!
We all know nurses are overworked, but there are certain responsibilities that go with her job & her attitude &'behaviour towards you was unforgivable.
I can see if you went in for a blood test & then asked about something she wasn't expecting it might have thrown her....but being a trained nurse ( or was she an HCA?) she should have dealt with the situation in a way that was far more sympathetic. Bottom line used her common sense - not have a rant at you!
You should not have apologised - the nurse will think she behaved correctly but she didn't. She should have done what the receptionist did and treated you with kindness and sympathy - that is a nurse's job, not a receptionist's responsibility.
I am allergic to almost everything but anti histamines do cancel out most of the allergic reaction albeit they make me drowsy and a bit brain dead so it is hard to cope with a job. They are useful though as a stop gap. Buy the non-drowsy type (still make you drowsy but not as much). I had horrendous reactions to products like prednisolone and painkillers.
What was strange though is that I took a painkiller recently (Devil's Claw) and though it relieved the pain quite well, I was allergic to it and took anti histamines but the anti histamines also relieved the pain. The same thing happened with Prednisolone. If you buy painkillers, it is important to get an organic non-chemical one. The Devil's Claw I took contained a lot of chemicals but I have now bought an organic version to try out.
I do wish I could get my Chinese tablets - they reduce inflammation and pain immediately and also reduce allergies and psoriasis and a plethora of ailments and make me very mentally alert - and an added bonus is that I had the best thyroid results in 15 years after only taking them for a few months. But - they've been banned by the EU.
Looks likely might have to do the same thing with the antihistamines, almost sounded as if my rheumy nurse was a bit exasperated when she said "you're body does not like our drugs!".
How frustrating to find something that helps that you can't get.
I was in tears reading this. My last three appointments with gp, consultant and hospital nurse have all ended in tears through frustration, pain and sheer hopelessness. Thankfully they all listened to me with sympathy and I walked out feeling as though a great weight had been lifted off my shoulders. Waiting for my date to start rituximab, as had to stop humira. Don't feel guilty for what you did, she didn't respond to you in the way she should have, obviously needs some extra training in her people skills.
One of the replies above said I 'shouted' at the nurse, which I never said and did not do. She then, after I replied sent me messages telling what I said and that I was wrong. She has now blocked me. Her response has almost stopped me from reaching out, but just rereading all the above messages above it has reinstated my hope for supporting each other, not making each other feel worse. To those who have supported me, thank you x
Do you know I don't think any of us mean to upset anyone.....but we get so involved with our own situation we sort of forget we ALL have problems.....some are worse than others......but we all think we've been dealt a lousy hand!
I must admit I often force myself to read a post twice & often find I've got the wrong end of the stick first time round!
OMG YOU POOR THING, I AM IN PAIN MYSELF WITH KNEE OSTEOARTHRITIS BUT YOU SOUND SO MUCH WORSE. I WONT PRETEND TO UNDERSTAND YOUR PAIN BUT I WILL SAY A PRAYER FOR YOU AND HOPE THINGS WILL IMPROVE FOR YOU. MAY GOD BLESS YOU AND KEEP YOU AND TRY TO HAVE FAITH LOVE MARGARET IRELAND
I cried a lot in hospital last year when I had to come off Azathioprine - the 4th DMARD I had tolerated badly. The nurses were all quite kind to me but found it hard to comprehend how distressing it was for me to try yet another drug that appears to work, only to have to be rushed into hospital because of another horrible allergic reaction.
It took a consultant and a junior doctor to finally get to the bottom of my feelings of despair. I recall telling them both that I felt every time I take a drug, I'm self harming now.
I think they probably learnt quite a lot from seeing how a patient with very low drug tolerance actually feels about this experience. Unfortunately it has put subsequent doctors off giving me further treatments. But as I've been rediagnosed now that I'm off everything - this has worked out better for me in the end.
I honestly think that phlebotomist needs some training in how to respond to someone with kindness/ compassion rather than over defensive time keeping . After all people come in to have their blood taken for all sorts of reasons and with all sorts of apprehensions and fears.
I can only hope that she learnt something important from your frustration and distress. My husband would also bring something sweet and delicious to boost me - how lovely they are!
Thank you Twitchy, I hope so too. it really is frustrating, when this happened before and my rheumy asked me to inject again - my Gp called it self harm. it was a relief to hear him say that, as that was how I'd been feeling but didn't want to voice it.
I've already headache exasperated tone I the voice of my rheumy nurse when she said "your body does not like our drugs".
I do expect nurses to be more considerate because they should know that we are in great pain and suffering.
Yes, do cry it out if you need to, I do feel how you feel though I am now in remission. Do take good care and there is always hope to be back to your normal life again. You are perfectly normal to respond that way.
I'm sure we've all been there at some stage!, I know exactly how you feel, the medication makes you tired and it seems as though nobody wants to help, and sometimes they do and other times they don't. I'm at this stage at the moment, I'm on methotrexate and i have nearly all the side effects from it and I can't get an appointment with my GP nor can I get anything from my consultant. It's tiring and frustrating and nobody understands that we are alone at times. But this page is the best thing I have come across, everyone supports one another. You are never ever on your own, we are all here for you.
We're so damned fragile when things are worrying us & the people who can aleve that worry aren't readily there for us aren't we, particularly concerning side effects.... a wrong word or even a look can open the floodgates. I choose to see one of our Practice nurses for bloods rather than the phlebotomist as if I have a question on my non-specialist meds they either can help or if they don't know will wait until a GP is free (usually before the next patient is called) & ask whilst I wait. I probably haven't been as concerned as you about any of my rheumy meds but I know they wouldn't be able to help because well, they're not what they deal with day to day. I would have to leave a message on my nurse helpline in the knowledge I won't be contacted immediately & although I know it's not a satisfactory situation it's all I've got. I wonder, are you able to have Rheumy nurse appointments as & when? If you are do call them asap, or even present yourself at clinic, I've never needed to do it but surely they'd be duty bound to see you if they make it that there's no other way to report a problem.
Just a thought, it's your title that says that you shouted at a nurse, is that where the misunderstanding has happened? Either way we're not here to fall out with one another to the point of 'blocking' (though quite how that's possible from one member to another I don't know). No, we're here to support, empathise & understand how this flippin disease(s) messes with us, even if we can't physically help we're here to get it out of your system.
Take care Chloe & I hope you're able to find the support & the answers you're needing just now. x
It was frustrating because out of my entire post that was what she picked on. I didn't shout, but like we all do when we are emotional we exaggerate?
It's odd being totally at the mercy of the NHS and others who are so Iver stretched that they aren't allowed to really connect and do what it takes to make a real difference.
I understand, & when you're upset everything can be blown even more out of proportion.
I appreciate how hard pushed it's become within the NHS, it must be doubly difficult working within it, you've to be a special sort of person to not let it affect you.
Oh bless you. I am a therapist too and it is hard having arthritis and being there for others. Seriously bless you. Don't feel bad for crying I think you have a point. I had an allergic reaction ( rash on trunk ) to the first drug I was put on and continued to get a rash for some time after I was no longer on the drug only to be told in a blaise tone that this particular drug does sometimes give people psorasis ( sorry can't spell it ) . I thought well that's bloody marvelous now I have a rash on top of the arthritis. Luckily the rash stopped eventually. I then , like you , had an horrific reaction to sulphasalazine and am damned if I am taking any more drugs as I am getting a little better with physio, diet hot baths and voltarol ( although I darn't use it too often as I don't want a skin reaction. I don't take anti nsaids as I had inflammation of the gut when I first got arthritis and I am not prepared to go through that again. I think the NHS forget that although it is important to have healthy joints it is alos important to have a healthy, stomach, lungs and liver. Take Care x
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