Kickas.org Forums Treatments, Drugs and Alternatives Anti TNF and other biological medications Yay to Self Inject (TiredOfPain, Don't Read!)

Thought I would share my experience of having the Remicade infusions done at the specialist hospital.
Up to about the 9th, it had been straight forward. The nurse inserted the needle easily into the back of my hand - I'm a very veiny person.
On the 10th, a new nurse (she had come over from England and was supposedly very experienced) went to do the infusion. She stuck the needle in, then told me she must have hit a valve, took it out, and tried again with another. It turned what was normally a simple exercise into an irritation. When she attended the patient next to me, I heard the same comment "I've hit a valve, all veins have them." "I'll just do it again."
I got a different nurse on the 11th, and it just took the usual one go. Unfortunately I got the English nurse for the 12th infusion, and yep, you guessed it, she hit a "valve" again.
Then as the infusion started, I got palpitations, went dizzy and felt like I was going to black out. I hit the panic button. Finally a nurse walked over and asked me what was wrong. I told her that I was feeling quite crook and was going to black out. She looked at the infusion machine and quickly pressed some buttons. I started to feel normal again. She checked how I was, then quickly walked away.
I guess there are some real advantages to self injecting!

Hi Jim,
As a mother dealing with a child that has had health problems his whole life (he's now 24), I don't hesitate to refuse treatment from a nurse that I know is incompetent. It is easier to take care of others than to advocate for ourselves. Next time,if there are other nurses available,politely tell this nurse to get someone else.
Hope you are feeling better.
Laurie

Thanks Laurie,

You just made me feel like my post was worthwhile. At least if someoneelse reads your response, and they are in the same situation, they will know what to do.
Luckily, I'm on Enbrel now.
All the best,
James

I agree with danyhurts. I had a dr removed from my daughters care one time. I later found out he was asked to leave the hospital shortly later. As for the valves. Mine shut down all the time. But, the Dr. knows about the problem and how to deal with it. So does his nurse. SO do ask for a different nurse next time.

Your a brave boy James, I'm quite sure I would have hit the deck. How are you going with the self injecting? & are you happy with the new medication?. Mez

Hi Mez,
Not brave, just very trusting - I have to learn not to be!
Someone else wrote in a post that they love Enbrel (maybe it was Remicade - there goes the dementia). Anyway, did my first injection last night, and the psychological aspect was the worst. The needle is so thin, that once I did the deed, I agree with everyone else here who has said the syringe is easier than the pen.
All the best,
James

Well done James. I agree about the psychological part, takes a bit of getting your head round it. I should have done my Humira injection last night, but my 11yr old has been home for the last week with a very nasty tummy infection, another nice one from school. I'm puting the Humira off for a couple of days just incase I cop it. I hope the Embrel brings you a whole new wonderful pain free life.

Mez

Funny guy, Jimmy...I promise I won't read this (fingers crossed behind back):-D

I miss the Enbrel, not because it didn't work for me of course but because I loved having total control over the process. The Humira pen was annoying. When I can't see the needle, I get kind of jumpy and had to just hold my breath and get it over with. Self-injections are the best way to go I figure.

The Remicade is fine, haven't had any worrisome troubles with the nurses at the clinic yet. Last time they had a bit of trouble due to my "rolling veins"? LOL never heard that one before! A wee bruise resulted from it.

I've never had a problem with needles and got a big kick out of watching guys in my platoon pass out during innoculations in basic training...it was usually the biggest guys who would turn white and pass out - go figure. After my hospital stay, I became pretty scared of needles for a while - didn't like them one bit. I blame the "vampire ladies" who came around every three days to drain me of almost all the blood I had left.

Now I'm back to not caring. I'm also not spooked by "horror" stories...not that I read what you wrote mind you (fingers still crossed behind back).

Take care of yourself Jimmy and I sure hope Enbrel does the trick for you!

Keep on KickingAS!

Chris

i had similar experience with my daughter in the hospital.. she spent 5 days a week in the hospital for 4 weeks and everytime one particular nurse was on staff for my daughter, she'd have to re-do IV's everytime she came in to do her job. No other nurse ever had IV's slip out while they checked... only that one. I finally told the doc I didn't want her working with my child because she was getting freaked out everytime she saw the lady! ugh! I learned that we CAN object to incompetent people... no matter how nice they seem to be!

she has to have daily injections and does not like the injecting pen... it makes her jump & seems to cause her more pain, so we took the thing off & just do it manually. No problems for her anymore.

Glad you made it thru, Jimmy!

Thanks Mez,

It's really great to read everyone's responses. It makes your realise how "normal" you are. Glad to hear that other people JUMP when using the pen, and also how it isn't my perception, that there really are incompetant health professionals out there - although luckily they are in the minority.
All the best,
James