I went for my Infliximab infusion today, managed to get there on the bus and apart from joint pain I didn't feel ill.
It all started to go wrong when the nurse tried to put in a canula, she tried my left arm, right arm and the back of my right hand, each time it just didn't work because the vein was rupturing (this was trigger number one, I am blood phobic and while I'm OK with blood tests now from sheer use any talk of actual veins is a no no.) Then the rheumy nurse had a go and managed to get the canula into my right elbow. Then my urine tests results came back and she said 'oooh you have blood in your urine'. Trigger number two. I'm very sensitive to being told I'm bleeding when I don't realise I am, it is feeble I know but I just can't help it.
I remember a nurse getting my infusion ready and me saying I felt faint, next thing I know I'm coming round surrounded by nurses, vomiting into a cardboard bowl. I had no idea where I was or even who I was. I was absolutely drenched in vomit and urine. They put me on a bed and got the rheumy to check,me out, she is the boss rheumy not the one I usually see. I had to have oxygen, an ECG and an injection of anti nausea drugs in my bum. It took about half an hour before I was capable of having my wet clothes off and being put in a gown and paper knickers and another two hours before I could actually think straight.
The rheumy wanted to try putting the canula in an easier but more painful place (my original canula came loose when I vomited on it) so they put anaesthetic cream on two places on my arm. In the end they didn't try again as I wasn't coming round fast enough.
My very expensive bag of Infliximab was ruined and wasted. I felt terrible for the nurse who organises my treatment as she has to justify and explain what went wrong and why such an expensive drug went to waste.
I had an injection of steroids in my other bum cheek to tide me over until things get sorted out. I don't know what will happen, the rheumy said to the nurses 'whose idea was it to prescribe Infliximab to some on with a blood phobia and poor veins?' so I hope my rheumy doesn't get in trouble. I don't know what has happened to my veins in the last six months, they used to be OK.
A lovely nurse went to the hospital clothes bank and picked me out some clothes to come home in, I am now the proud owner of a pair of navy tracky bottoms, a khaki t shirt and the hugest pair of white cotton knickers I've ever seen. It was like a grown up version of being sent home in school knickers with your wet knicks in a bag!
I think the nurses will have been glad to get home tonight, if I am ever allowed back there I will take them a big box of chocolates!
Thanks for reading XXX
PS put in a nice train pic to cheer everyone up, it our local heritage line, and one where The Railway Children was filmed.
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Dogrose
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The picture is great it must be the Keighley and Worth Valley Railway some where near Oakworth Station may be
I am also on Infliximab I had mine on Wed I also dread the cannula some can be pain free other times it makes me think is it worth the pain of the cannula
Thanks, it was just leaving Keighley, I was standing at the far end of the platform when I took it. I think the worse thing was the way she kept telling my veins had burst! xxx
Oh my love you have been in the wars haven't you.Is it in your notes about your blood phobia and if it isn't why on earth not. I hope you got a taxi home and didn't go on the bus.I bet your black and blue after all that. I hope by the time that you read this you have recovered from your ordeal. Love the photo of the train,my daughters flatmate is big on trains, he has spent the last weekend at Severn valley railway and he gets into places the general public can't go. Well gentle hugs and i hope you feel better this morning.xxxx
So sorry you have had such a traumatic day, dont feel guilty at all about was has happened. Glad to see you have a good sence of humar made me laugh about going back to school days being sent home with wet clothes in a bag you can always use the clean knickers for a duster lol! Hope you are ok tho & i'm sure they can sort you out. I love the picture & i am jelous you live near a line like that i love steam trains. Xx Alison
What a terrible day, sorry to hear you had such an awful experience, but glad you were able to see the funny side.
Love the pic, we often visit that part of the country (husband from Bradford) It's so beautiful up there. Hope you've recovered from your day.
Dogrose I just read this - what a nightmare for you! I don't think you should feel the slightest bit guilty and hope whatever happens next it is much more peaceful and manageable for you. Tilda x
ps love the picture!
What an awful experience Dogrose I hope your next visit to hospital is far less traumatic. Sending you a gentle hug. I love your pic, it's so atmospheric x
What a time of it you've had, Dogrose. I couldn't believe how many things went wrong. So sorry it was a traumatic day. It can only get better next time. You need a treat ... Treats ... Big time ... After all that. Something to make you smile. Hope you can take it easy for a few days and the steroid calms down any inflammation. If you're in the Keighley area you're not too far from me. Perhaps the pants could be used as a windbreak when you are next sitting out in the garden! Take care. Julie xx
Oh dear, poor Dogrose what a horrid day you've had
You certainly shouldn't be feeling guilty, it's not as if you were able to control your runaway veins or your reactions.
Hope that you're able to have a quiet, recovery day today:-}
What an awful experience. I have been on 'biologicals for a few years now and have witnessed many incidents on the ward. In fairness the nurses I have a re brilliant and canulas can be difficult for patients and nurses. They hate hurting us and do their very best to make it as painless as possible. This past few months I have been getting mine in the big vein in the side of my wrist......sounds awful but it gets better as time goes on. I have been in the ward when others have taken sudden reactions and it's like a scene from casualty.....but everyone knows what to do and it is all very efficient.
The only incident I have ever had was when the pharmacy sent the wrong drug up for me.....you know how they check and double check everything and it was discovered that they were about to give me the wrong drug!! The big man (my consultant) was on the ward in about half an hour asking questions. My poor nurses were in a panic in case they had ordered the wrong one but as it turned out it was the pharmacy's mistake......the consequences was that like your event the batch of very, very expensive drugs had to be destroyed......
Like some one else said I hope you didn't have to go home on the bus.....you poor baby.....having said all that there are times when I go over to the ward for my infusion, get hook up, no problem and the we all have the grandest chat and laugh and tell jokes and carry on with the nurses.......the hours pass reasonably fast.
I really hope things are sorted out for you next time, I'm sure they will. All the best. X
Oh no that is so bad, I hope you're feeling much better today. I had a similar experience with children above me in Disney land in America is having to much candy and me and my daughter got covered in sick! Disney being Disney, immediately swung into action just like the nurses do, grabbed me and my daughter some of them started cleaning the seats on the floor and armed like surgeons and the rest of them to us to a very private first aid room, where we showered and they dressed Katy in beautiful little pink shorts and a pink top and me in a dark blue man's shorts and dark blue I looked like a female wrestler and Katy looks so pretty ha ha hah.
But I hope they sort out the medication you can have because you really don't want to go to that experience again do you, lots of love
Thank you you made me laugh and I've got a bad day today with sweating and vomiting (not sure if its the MTX or Infliximub). But your story was a tonic...not for you obviously, I hope you can go back soon for your Inflixy.
i'm sorry you had such and awful time - i know how you feel about needles - i can't seem to get used to them either. i'm not so a squeemish about blood - but when that needle is in a vein taking blood i just start nattering about anything - its like a nervous reaction.
i hope your next treatment is a bit easier and look on the bright side - you got some free knickers! hehehe!
Thanks for all the replies everyone, I have a had a nice afternoon on town with a friend sitting inn the lovely sunshine and pottering round the charity shops, so nice for the pain to be less from the steroids though I did want to try to stay off them for as long as possible. I have a Terry's chocolate orange with popping candy for my special treat!
The rheumy nurse called this morning, she wants me to come back in as soon as possible for another try, I did say to her we need to try a special routine to make sure I'm OK but she seems to think their routines are just fine and don't need changing. I have told me rheumy on several occasions that I have psychological problems with blood
tests (though recently I have managed to be able to go and have them on my own, was so proud of myself ) so it must be in my notes. The rheumy nurse says I need to sort out my phobias as I have an illness that requires lots of blood tests and canulas. I do realise this but I have been working on my problem for years, some years ago I was so afraid of bleeding to death I wouldn't leave the house, I have had loads of counselling and sometimes drugs to help me and I actually feel I have come so far since those days then this awful illness happens with all the blood tests etc. It is so cruel.
I rang my GP to make an appointment to start more counselling but they said they can't do pre-bookable appointments (not sure if that is a permanent change or just temporary) and was told to call every day at eight thirty, tried that before and gave up after about five days of failure!
Have you considered hypnosis? - it can be really effective for phobias. It would take a couple of sessions, but they normally tape the session and give you the tape to listen to everyday between the sessions:-}
So pleased to hear you are feeling better today. As a blood phobic myself (I don't even like the word) you have my every sympathy. Fainting is just horrible and I am usually sick afterwards too, and then there's the shame of it. Years ago I had cognitive behavural therapy which helped at the time, but I would rather not have a running commentary from the nurse when I'm trying to think about calm and peaceful things. Have a good weekend. xx
First let me say, how much I love that picture, it immediately took me home to my home town of Meadville, Pennsylvania, USA, which is also nestled in the hills, the foothills of the Allegheny Mountain Range, and also a railroad hub.
I want to assure you, you will likely do as well, or even better, with one of the injectable biologics. I used to take Remicase, IV infusion, but developed sepsis from a spider bite and my Rheumy did not want to risk lowering my immune system again. But 6 years later, I started on Enbrel, then Humira and neither of those did muich. I have been on Simponi, a once as month injectable, has made so much difference, he now feels I am likely as good as I can get. So, hope you can get one of the injectables and find it to be of great help for you Loret xxx
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XXX
I hope your next visit to hospital is far less traumatic. Sending you a gentle hug. I love your pic, it's so atmospheric x
) so it must be in my notes. The rheumy nurse says I need to sort out my phobias as I have an illness that requires lots of blood tests and canulas. I do realise this but I have been working on my problem for years, some years ago I was so afraid of bleeding to death I wouldn't leave the house, I have had loads of counselling and sometimes drugs to help me and I actually feel I have come so far since those days then this awful illness happens with all the blood tests etc. It is so cruel. 
Long and frustrating road
Just had a full blood test
Just had a breakdown at work
Alternative to Naproxen 
Just had a steroid injection 
