Hi My Benapali is being delivered on Tuesday. My Rhumatology nurse said because I am already on mtx injections. I shouldn't need a nurse to show me how to use it.I would also have to wait longer if a nurse was needed. She couldn't see any problems and asked if I would have someone with me.
I have read on here that I should have a nurse. Am I worrying unnecessarily ?
Thanks
I had to have a nurse with me for my 1st benepali injection in case of an adverse reaction, she had to stay with me for a good hour to monitor me. I would double check with rheumatology as I can't see the rules changing.
Similar to Bootoo's experience. I've been on metoject for nearly five years and had a nurse with me for an hour in case of a very rare episode of a bad reaction to Amgevita. I'd want a nurse there just to be sure.
Same here as you and Bootoo. I have many years of experience of different cliques pens and syringes but my rheumy said no to doing my first Abatacept myself. I’d had an itchy site allergy with Enbrel in 2013 but not after the first one but after doing three : an itchy injection site as opposed to anaphylaxis, but I feel that made her cautious.
When I swapped to Enbrel I was just told to get on with it!
My understanding is that there are two issues. One is safety given there is a chance of an allergic or otherwise adverse reaction (however, that is technically true of any new medication anyone takes for anything, and we don’t routinely have supervision for prescribed drugs day to day), the other is that different meds have slightly different delivery mechanisms. My mtx pen had a button, my imraldi and Benepali pens have been auto injectors triggered by pressure. My imraldi pen technique was depress, count to 10, withdraw, my Benepali is depress, wait for the second click, then count to 10 after that before withdrawing. And different brands of the same med may also have slightly different injecting instructions: just because you’ve been trained to use one brand of one drug, that doesn’t mean you can correctly use every brand or drug out there. My experience has also been that where meds are coming through a home delivery service, they will usually insist on sending a nurse out before you can start treatment. I’ve had 3 different home delivery companies (one each for mtx, imraldi, and Benepali) and that’s been the case with each one so far. Do you know where your meds are coming from yet? Companies like Sciensus and Healthnet homecare will usually send a nurse out, but that may not be the case if your meds are coming direct from your hospital pharmacy.
I should have had a nurse but after 10 weeks of waiting I rang my rumey nurse up and said I am just going to inject myself as am in so much agony I cannot wait! She said I am not telling you to inject but I would. When the people that should have come rang me up another 6 weeks later I told them I could not wait and I have injected myself. I explained I had been waiting for 16 weeks for them to contact me and I contacted them to come show me but they kept putting it off. I said how do you expect me to work if you don't come show me. After that call they kept contacting me to show me how to inject but it was too late by then and I asked them to take me off their list. Good luck and I hope they come over quickly.
I have been on 2 biologics and no mention was ever made of having someone with me
I’ve been nursing for 34yrs, and would still prefer a visit for the first injection. Although we can have an adverse reaction to anything, the fact injections are absorbed much quicker than tablets, means the reaction can come on much quicker. Many Trusts outsource to these companies, most of who will insist on sending a nurse as it is part of the package paid for. An anaphylactic reaction, needs very prompt intervention and the nurses carry adrenaline injections to administer immediately. Having someone with you, only allows them to call an ambulance. Given current wait times for ambulance’s I wouldn’t risk it, you could go downhill very quick. If you know the company you could get in touch and enquire how long till they can send a nurse. If the wait is lengthy your gp practice may allow you to do it at their surgery where they also have access to adrenaline. 🤗
A nurse or a pharmacist should show you. I've been on enbrel 16 years but here they gave me benepali. I googled how to do it as I lost one shot when I pushed it incorrectly as I've always used prefilled syringes not an auto injector.. but they didn't offer me anyone to show me how to do it. I would call the rhuemy..any first time use should be with a nurse in case your are allergic.
I had a nurse with me for my first 2 injections of enbrel. I was told like stated above it was incase I had a reaction to the drug. Nurse told me she carried adrenaline injections on her, plus she had oxygen in her car. She did say that in all the years she'd been watching people no one had had reaction.
When I started metoject, (I had already been injecting Benepali for a couple of years) there was a long wait for the nurse to do a home visit to supervise, so my hospital allowed me to come and do my first injection in the Rheumatology day unit so that there would be nurses there who could assist if I had a reaction. Perhaps you could ask your Rheum nurse if you could do something similar?
I also just got on with it…. When I swapped injections. They have good videos online do which ever injection you have pen/needle. I had my husband there for the first one just in case but after that nothing just me and a video!
Good morning. If you would like support, information or just someone to talk to, our NRAS helpline is open every weekday from 9.30am to 4.30pm nras.org.uk/helpline/ 0800 298 7650. Or have a look at our website nras.org.uk. Kind regards.
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